What I want you to know about Celiac Disease

What I want you to know about celiac disease

This is a very raw post about life with celiac disease that I wrote a couple months ago after being “glutened.” I was frustrated and sad, and this is what poured out. I haven’t posted it publicly before, but feel like today is a perfect day to do it because of the Disney and Chelsea Handler craziness of this week.

And really, it all comes down to this:
Choosing to eat gluten-free because it makes you feel better and having to eat gluten-free to save your life are two very different things.  <———ATTENTION MEDIA

(Edit: I wasn’t referring to gluten intolerance in the statement above. I meant those who “try to eat gluten-free because it makes me feel better but then I cheat whenever I feel like it and I’m really doing it because it’s the fad of the moment.” I hope that clears it up.)

So here they are, my raw feelings on
what I want you to know about celiac disease:

I want you to know that I’m not a picky eater; I’m not on a fad diet; I’m not a health freak.

I want you to know that I feel like the biggest pain in the butt when I sit down at your table and have to go through my spiel. I want you to know I see your eyes roll when I use the term gluten-free, and it makes me nervous for my health.

I want you to know that gluten exposure turns me into a different person. Like a ‘Dr. Jekyll and Mr. Hyde’ kind of change. I go from feeling like a normal happy human to, in an instant, feeling like I want to punch the world in the face.

I want you to know that I get anxious, depressed, frustrated, and short-tempered when gluten enters my body. I try to stay away from my family as much as possible so I don’t say anything I will later regret, although it inevitably happens.

What I want you to know about celiac disease - inspiredrd.com

I want you to know this isn’t an “upset tummy” disease. All celiacs are different and my symptoms affect my entire body.

First it feels like icy fingers are fiddling with my brain. Then my stomach is a mess and fatigue hits me like a truck.

I get hot flashes, mood swings, bladder pain, aching joints, and headaches. The worst part lasts 1-2 weeks and I don’t feel like myself again for at least a month. Sometimes I think I’m better, then BAM, I’m driving with my kids in the car and I can’t focus my eyes or remember where I’m going.

I want you to know it’s scary.

I want you to know I’m sick of talking about celiac disease. But if we’re going to hang out, it’s going to come up. Social interactions always seem to involve food, don’t they?

I want you to know that nothing about this is easy. I thought being a dietitian would make the transition smoother. It hasn’t.

I want all healthcare providers to hear this: Stop telling your newly-diagnosed celiac patients that treating the disease is easy.  IT’S NOT.

And stop calling celiac disease “trendy.” It’s like a slap in the face.

I want you to know that as much as it helps to have awareness and thousands of gluten-free options these days, those things hurt us too. Food companies and restaurants are cranking out “gluten-free” items as fast as they can to cash in on the fad.  But most of them aren’t doing it responsibly. Then we get sick.

I want you to know I have to think about celiac disease all the freaking time. Every time I put food or drink in my mouth, lotion on my skin, gloss on my lips. Every time I serve my kids pizza at a party then scrub my hands. Every time someone asks if I want to meet for lunch.

What I want you to know about celiac disease

I want you to know that as much as I hate this disease, I’m thankful to know the cause of my health problems. I’m thankful to have a name for it.

I want you to know there is an incredible celiac community out there!  It is full of beautiful humans who love and support each other. I don’t know where I would be without them.

I want you to know that if you suspect you might have celiac disease, you need to get tested before going gluten free. Don’t let anyone tell you otherwise.

I want you to know that you know someone with celiac disease, and they need your love and understanding.

This is harder than it looks.

Do you have celiac disease? Adrienne does too and she shared a few things she wants others to know as well.

What do you wish people knew about it?  



  • Aurora May 24, 2013 at 10:01 am

    What do you say to your doc to get tested? My husband thinks he has it and he highly suspects our 3 year old has it and is being misdiagnosed and treated for reflux. 🙁 so now reading this makes me feel bad for my family not taking their symptoms more seriously. Thanks for blogging! Awareness is so important I think! 🙂

    • Kyra May 24, 2013 at 12:33 pm

      I had it a little easier, because my sister was diagnosed so I just explained that when I asked for the test. You have to tell the doctor, point blank, ‘These are my symptoms. I want to get tested for celiac’s disease.” (And if they don’t know what it is, you might have to explain it.) A lot of time’s doctors don’t want to listen. If they say “Well, it sounds like this other thing.” You have to keep repeating, “I want to get tested for celiac’s disease.” It is literally a referral and a thirty second blood test. If your doctor flat out refuses, stand up, say “Thank you for your time. I am going to seek a second opinion,” then walk out. Get another doctor. Instead of making an appointment online, call the receptionist, explain that your former doctor wouldn’t give you a referral for this test, so you want to see another doctor.

      Doctor’s are supposed to work with you, and take your concerns into consideration. Unfortunately, a lot of the time we have to fight for our health. Keep on pushing the issue until they give you the test. (Of course, it might be no harder than just asking for it. This is really worst case scenario. ;)) Also keep in mind the test can be a false negative, so if you guys are still sick after the test, I would suggest going off of gluten for a few months. My test was negative, and this is my third day off gluten. I’m having withdrawal symptoms, but I can already feel that the mysterious symptoms that have plagued me for eight years have lessened. Good luck! (Sorry for the novel-length post :))

      • Teri May 28, 2013 at 6:42 am

        I loved this article. Explaining gluten free when eating elsewhere is a challenge.

        I also agree that sometimes it takes walking away from your primary doctor and finding someone else. My pcp agreed to do the test after some argument. His vote was to just go gluten free after years of telling me that some people are just like this and throwing more medicine at me. I wanted the diagnosis before taking the big step forever. He did not refer me to the gastro doctor for the endoscopy nor test for the myriad of minerals and vitamins that were so low from years of malabsorption. I gave him on more office visit where he again demonstrated he knew nothing about Celiac Disease then I moved on to another doctor. I highly suggest that people move on to another doctor when their regular doctor is not supportive. I am so happy to be out of pain.

        • Vicki June 20, 2016 at 8:31 pm

          Blood tests do not always show celiac disease sometimes only a biopsy will show it.

      • Brenda January 12, 2016 at 3:09 am

        Sometimes I think its possible for the family of a Celiac to feel almost as bad as the Celiac. My 16 year old nephew has been diagnosed for a little over a year now.. When he is glutened, he has severe stomach pain, diarrhea and so many of the symptoms you all have mentioned.. But he also throws up. He has been sick off and on for years before he was finally diagnosed.. The reasons I say it’s hard for the family .. Are emotional.. We see him miss out on so much. He had to give up being in the high school marching band.. He is not able to go to school.. My sister is praying he will get to go his senior year, which is next year. He is completely gluten free, but still sick so much. He truly understands the seriousness of the disease, and he does not eat gluten.. It must be cross contamination. He has lost weight this year. He tries to be as normal as he can, but it’s hard being a teen! My sister and I have researched this disease, and it is almost impossible to explain it to others. I doubt they really want to know all of those details anyway! It just seems to me that he should be much better by now! He never complains. He just goes to his bed.

        • Katrina Seth January 14, 2016 at 9:56 am

          Does your nephew have thyroid issues also? I do with my celiac and lactose tolerant because my villa in my intestines are so damaged from so many years undiagnosed. Also check addison disease… another auto immune disease linked with celiac.

          • Vicki D May 13, 2016 at 2:06 pm

            My 16 yr old almost died by the time she was correctly diagnosed…she was a walking skeleton! She has Crohns disease. Be sure to keep looking if the problem hasn’t subsided.

        • Diann L January 15, 2016 at 2:28 pm

          I don’t know if your son is just gluten free, but corn, soy, dairy, beans, nuts and nightshades (potatoes, tomatoes, paprika, eggplant and others) could also be playing a part in the problem. Many people with celiac also have one or more other autoimmune diseases which can be worsened by all these foods. Try the AIP(autoimmune protocol) diet for him. It’s worth a try as I have seen many stories of success with this, including my own daughter in-law who has Graves and Celiac disese. After 3 months on this diet, she is medication free and still has her thyroid. She is not the only one. There are many more successes. Try looking into Amy MyerMd, at http://www.amymyersmd.com., or just look up AIP diet. Good luck.

        • Katie January 15, 2016 at 8:40 pm

          I’m sorry to hear that your nephew is still sick. Gluten can hide in so many different places. I would recommend cutting out corn especially and see if that makes a difference. Corn has a protein that is very similar to gluten and can mimic gluten in some people. Also be sure to check other products like shampoo, conditioner, vitamins, and toothpaste. If he has a girlfriend, kissing can be a source of cross-contamination. If you can’t find the source of his illness it would be worth it to talk to a professional. Don’t give up until he is feeling back to normal. Being contaminated with gluten is a terrible, terrible feeling.

        • Lisa February 8, 2016 at 5:59 pm

          Brenda this sounds so much like my 14 year old daughter…GF since her diagnosis April 2015 and in spite of that she continues to be sick always. It is truly debilitating for her. She has the stabbing stomach pain, her bones and joints hurt so bad she can hardly move. She is a freshman this year in HS. She missed the better half of her 8th grade year and now has missed a ton of the first semester in HS. She was a year round soccer player and cannot do anything physical. I am in contact with all of her docs again today because we are in a crisis once again. this is no joke 🙁

        • Nancy Starr February 26, 2016 at 1:34 am

          We have been living with Celiac for more than 19 years… There was nothing to purchase back then…I can tell you that you need to check out all things in the house…
          Shampoos, toothpastes, deodorants, laundry soap, vitamins, etc… Everything… And look for hidden words as well… Many people who are celiac can not digest dairy either… So Maybe try to eliminate all dairy as well and take a very good quality probiotic… Like GIProHealth has one that is certified Gluten Free… Ordering on line…
          Those have been a few things we have found… BUT if your entire house is not gluten free, there will be wheat residue in the house and can adversely affect… The smell wafting from an oven is actual gluten fibers not just a smell… Don’t linger in a bakery, department store or fabric store (starches are usually glutenious)

          • Cathy March 22, 2016 at 6:29 am

            I’ve had celiac disease for 20 years. Please check her makeup. Many brands contain gluten. And she could be absorbing it through her eyes. Also medications – many I was taking also contained gluten.

        • Velle Rask April 4, 2016 at 9:15 am

          So here’s a biggie… It could be corn, but it’s 900% more likely that his problem comes from cross-contamination from you. It’s nearly impossible to go full gluten free without removing ALL gluten from the house. Cross-contamination at home is one of the easiest things to have happen, you know when you put peanut butter on bread and then stick the knife back in? That entire batch is now contaminated. Using the same toaster as gluten bread? All contaminated. Sometimes you even have to replace some kitchenware as well when eliminating it from the house, it’s really hard but you gotta do it. It’s never a one-family member thing to do, you’ll have to give up a lot as well.

          Recently a friend started staying over and so we had some gluten in the house, we were super careful (I’ve been completely off it for over 10 years), but I still managed to get hit somehow. You really need to keep all of it out, check shampoos, hair products, makeup, lipstick, everything. Literally everything everything, all food, all soaps… It’s a lot of work…

          Also due to the damage it can do to your stomach, sodas, icecream, probably other things like spicy food will have to be eliminated from their diet until it has enough time to heal. Lactose intolerance is common, so either go lactaid milk or get meds for that, taking reflux meds while healing helps as well. I take lansoprazole daily. And only had a problem since when I mentioned before.
          -Using the same scoop between gluten and non-gluten icecream can also do it-

          I think that’s everything (typing all this on my phone so excuse the typos and in case I left anything out)… Oh it’s also usually genetic… Uhm but I think that’s it… Good luck, do your best for your child’s sake~

          (Hopefully you can eliminate everything sooner than later, you got this!)

        • Marion Reinhard May 2, 2016 at 11:38 pm


          I vomited for years and felt so ill,then I found I was allergic to dairy.Cut all dairy from my diet and have not vomited since.
          Cannot make my mind up about gluten I can eat it for say two meals and then my body aches and I get blurred eyes etc.
          But I had all tests done at the hospital and they came back clear except for grass pollen.The Doctor said because I had been eliminating certain foods out of my diet for some months before my tests that could have altered the outcome of my results..
          I find it all a nuisance and expensive,but still working at feeling well.
          Do hope your relative gets well soon,but please look at removing dairy from his diet.
          Oh one more thing my daughter suffered with terrible asthma in and out of hospital upto her teen years,we removed dairy from her diet and hey presto she was cured of asthma.

        • Brittney May 3, 2016 at 6:07 pm

          Brenda what blood type is he the reason I ask is I’ve heard that even after being gluten free for some celiacs based on blood type need a special diet…

        • Sam June 4, 2016 at 5:56 am

          Your nephews symptoms sound like mine. I had to also give up anything containing starch. So potato is a big one. Rice, corn and oats can be a trigger for some people also. The doctor explained it to me like this: “your stomach is in such bad shape after being sick for so long, it can not tolerate anything too heavy, and potato is common to cause issues in those situations.” It really is a test it and see reaction. Tomato, onions, garlic, pears, red meat, and some green vegetables also irritate my stomach at times.

        • Geri Tresvik August 27, 2016 at 1:59 pm

          I read a majority of the comments and nowhere did I see mentioned the possibility of being glutened from PRESCRIPTION DRUGS! Many otc drugs contain gluten but you can tell from their ingredient list. Drugss prescribed are a total crap shoot. Just telling the pharmacist probably won’t be much help either. You need to research, each company (generic or branded) has its own formula and starches show up in most.

      • Pany January 24, 2016 at 6:29 am

        Hi Kyra and everyone. my blood test was negative, but my biopsy showed thatn i had celiac disease. it took years to find out what was going wrong with my health. i tried many different doctors. most of them probably thought that i was crazy! i even tried hair tests that were shhowing low nutrients in the body! the naturopathist told me that my intestines do not absorb nutrients normally and something must be wrong since we are on a nutrition program and my follow up hir tests show low nutrients. people in my close enviroment were calling me crazy and that they didn’t believe to the naturopathists and the so called “hair tests”. i decided too look for a gastrenterologist and asked if there was a test to show how the intestines can absorb nutrients or not. we fixed an appointment for biopsy and did the blood tests for celiac disease. Luckily this doctor had a backround on celiac disease while he was working in the UK. My blood test showed normal but the biopsy showed damage and celiac disease. I was diagnosed in 2010 and ishould say that it is a VERY DIFFICULT condition to deal with. it does not depend on you entirely butt the people in your daily life. others thing that you exagerate. tthey canno’t understand even if youu explain and say that a thousand times. But we have to keep on trying to live

      • Pamela April 13, 2016 at 6:35 pm

        I had to insist on the testing repeatedly. My dr listed all kinds of other could be’s. I said, “yes, it could be that, but I want the test for celiac”. Sure enough, it is celiac. So here I am, newly diagnosed and figuring this out. Still trying to get the house gluten free, and learning what to eat outside of the home. But I am determined, to get this controlled.

      • Marguerite April 25, 2016 at 2:30 pm

        The blood test is preliminary and can be false negative or false positive, if you are having symptoms your Dr. Should do a scope abs take a biopsy of your stomach, that will be the definitive test. You will also need blood work to see if you have any vitamin and/or mineral deficiencies that need to be addressed due to long misdiagnosed celiac disease.

      • Brianna April 30, 2016 at 8:04 am

        It is super easy to just get tested! I do want to point out however, that when I had the blood test it actually came back inconclusive. I read that it’s quite possible for false negatives to happen all the time – so I didn’t end up going gluten free until about another year later. I ended up getting a bronchoscopy because I had pretty severe gastric esophageal reflux disease (GERD) and while they did the test my mother actually recommended they do a biopsy of the villi in my stomach. Low and behold it came back positive for celiac disease. I’ve been gluten free for over two years now and I am happy to report I no longer have acid reflux nor do I need medication for it.

        An important thing to note about the above is that I was not gluten free during the biopsy. Do not get one done if you are because it will come back negative! You need to have it in your system to get an accurate result. And acid reflux does come back when I do get Glutened.

        Thanks so much for this article!!

    • Alison May 24, 2013 at 7:32 pm

      Hi Aurora

      Doctors don’t always catch this. For over 20 years, I had been to many doctors. My sister finally discovered what I had. Anyways, the doctors can do a stomach biopsy and a celiac profile panel – blood work. The best thing that you someone can do is follow a gluten free diet and they should start noticing a difference in about 3mths – a slight difference. It took me at least 2 years to start feeling somewhat normal. I take a product called IBEAZE and that really helps. I don’t drink alcohol, smoke or take drugs. I am also Vegan. (I’m lactose intolerant but I wouldn’t eat dairy anyways). I don’t drink coffee – I drink herbal teas (organic raspberry leaf, lemongrass, chamomile, some mint teas – be careful some of the have gluten in the tea or the bags) and eat organically. It takes time and patience. A lot of it. I went to see a few nutritionists and homeopathics, but it seemed that networking and doing my own research and trial and error – as I collected all of this information, I found this was better than seeing the nutritionists and homeopathics. *even on a good day, sometimes, something triggers it and I don’t know what I have eaten, and I still have problems. The best thing is to network – so people don’t think that they are alone. A lot of doctors say that people are sensitive and want them to see a counselor and/or go on anti depressants without taking time with the patient. A lot of patience, though. It’s a lot of work and perseverance staying with the diet, but trust me, I’ve been on it for almost 8 years now and my life has changed. If it wasn’t for my diligent sister, I honestly don’t think that I would be here and if I was, I would not be in good shape. peace’n love to you. If you have any questions, you can email me 🙂

      • Pamela May 25, 2013 at 11:15 am

        In addition to the gluten in the tea or the teabags, there can also be SOY. ugh 🙁

      • Aly May 22, 2015 at 2:53 am

        Hey Alison!

        My husband has Celiac’s disease and I’m trying to find the product that you were talking about but I can’t find IBEAZE anywhere…. Is it still around…?

      • Amy December 19, 2015 at 1:44 pm

        I’m glad you talked about patience and diligence in the journey to feel better. I am 10 years out on my diagnosis (by way of genetic test and stool testing.. ENTEROLAB). I have slowly gotten to the point that I have so many good days in a row I almost forget that I have Celiac. I am so grateful for all the people who have helped me find my way. My most recent addition to my team is a Naturopathic Dr. who has worked with me to HEAL my leaky gut and I am amazed at how my body works better. It has taken removing more foods from my list that just gluten, and I also have diligently taken whole food supps since even before my diagnosis. Just impossible to get enough nutrients and vitamins in food alone.. especially with having to eliminate certain foods because of allergic reactions. All worth it. NOT EASY!!!! My heart goes out to all who take on this great self-love to be well and to flourish!

    • kim May 25, 2013 at 3:32 pm

      Know that the ONLY true test is an endoscopy with a biopsy. Just having the blood test is NOT GOOD ENOUGH. It can give a false negative.

      • Sam May 26, 2013 at 6:47 am

        Even an endoscopy isn’t always conclusive. Celiac is different in all people, and it manifests in different times in life, and damage from gluten can appear in bands on the intestine. Since an endoscopy only takes one sample from a small area, it’s entirely possible to miss the affected area entirely.

        Yes, getting tested is important. However, if blood tests AND an endodoscopy come back negative, it doesn’t necessarily mean you don’t have celiac disease. It just means you didn’t test positive for it. The symptoms themselves are the most accurate predictor of celiac. Genetics help as well. For instance, if you have a family history of celiac, or if you have a specific geographic/ethnic history. The Irish, for instance, have a high instance of celiac disease, and children in Ireland are routinely screened for it during childhood.

        • Ellen Conley May 28, 2013 at 7:04 am

          Yes, Irish people know about gluten. Ireland its a wonderful country to go if you need to gluten free, my husband and I went and the chefs were totally awesome had homemade English muffins in the morning, they treated me like a queen!

        • Christine Fontaine May 28, 2013 at 6:44 pm

          I completely agree I had an endoscope with biopsy and the blood test and both came back negative although I really don’t trust the GI I went to either. I definitely cannot tolerate it and experience the same symptoms described in this post. I also have a lot of other allergies and can relate to everything shared. I pretty much eat a raw food diet. I feel dumb sometimes when I’m paranoid about eating food others prepare and not to be but always regret it when I spend days in bed and a month recovering. I’m also super anemic which hasn’t helped. People just don’t understand and think I look fine so I must be lazy. Its lt makes eating with people hard! ;(

          Thanks for sharing and being so real!

      • Allegra May 6, 2015 at 12:10 pm

        I completely agree. I had a blood test drawn that showed me as negative after taking a genetic test that showed I was highly likely to have Celiac. My doctor suggested going gluten free for a few weeks and seeing how I felt. After a month I was no longer suffering from the gastro issues that had been plaguing me my entire life. Going completely gluten free is the only true measure I think, just be vigilant about it. Eat at home. Double and triple check your labels. Watch out for soy sauce!

        • Karen June 7, 2015 at 5:26 am

          I was given the blood test with no warning, I hadn’t really considered Celiac as a possibility because of other medical diagnosis. I had already cut way back on simple carbs like bread & pasta trying to lose weight. My blood test came back a mild/weak positive. I was just above the borderline. The Dr. (a hematolgist) told me to try eating gluten free for a month and see what happened. The response was surprising. Unfortunately for my follow up I ended up seeing an associate who wasn’t interested in discussing it, just addressed the anemia. I am going to see if I get a better response from my pcp in a couple days.

        • noreen September 23, 2015 at 7:08 pm

          I tested negative for celiacs but had partially removed it from my diet. I get very sick every time I am glutened and do not want to put it back in to get re-tested. I worry though because intestinal cancer runs in my family. Are there other tests that can be run to diagnose without having to return to a gluten diet

          • Katie January 15, 2016 at 8:54 pm

            Unfortunately, all tests for celiacs requires being on a non gluten-free diet. This is why I have not been officially diagnosed as well. Intestinal cancer should be easy to distinguish from celiacs since one disease responds to a gluten free diet and the other does not. Going back to gluten could ultimately increase your cancer risks though.

        • Suzy Shoemaker March 23, 2016 at 7:25 pm

          Isn’t that the truth, because we “LOOK” fine. I think the only people who REALLY get it, at ones who HAVE IT!
          I suffered since I was about 21 although even as early as 9 I ALWAYS had stomach problems. Very sensitive stomach. I now 64. Was diagnosed at 58 with endoscopy an blood work. I was so very sick I thought secretly I was dying. I ve always been a small person. Became hypothyroid lost 25 lbs. was severely anemic. Went down to 99lbs. Everything I ate just came right back out. I was So Tired no matter how much sleep I got. It was so hard to just function. I went to work everyday and faked it! I waited on people all day long an put on my happy face, but I was dying inside. I’d go home at lunch just so I could sleep to make it thru the rest of the day.
          CELIAC DISEASE is not some little Allergy! It’s a constant battle, and it WILL take a toll on your body if you DONT STOP EATING GLUTEN! It’s the root cause of everything I had. Your body is TRYING to survive and its drawing nutrients where ever it can bones too! (Osteopenia)
          I AM the picture of health on the outside. I was a runner, have always been a health nut eating things like WHOLE GRAIN BREADS
          It’s a learning curve for sure. It’s also an ongoing process. For me I find eating Paleo makes me feel the best. I do eat some G/F things, but I prefer Paleo. You have to discover what makes you feel the best. I’m finding eating at a restaurant (just salad) I usually get sick. I feel like I’ve given up sooo much. I love to go out with friends, but then I pay for it for 3 weeks after
          I’m so grateful to finally know! And my Dr Told me it’s the only disease that can be cured by eating correctly.
          We can’t say that about a lot of others, so yes it’s so challenging, especially if now it’s affected a lot of other things but it is what it is so we do the best we can to make the best of it.
          Joy does come

          • Stephanie C. May 29, 2016 at 8:14 pm

            I became severely ill about 4 years ago. Severe hives, bloating, diarrhea, chronic fatigue, joint pain, then became lactose intolerant. I saw close to 10 doctors in 9 months. Two emergency room visits, numerous tests. A complete nightmare. I finally saw a GI dr who told me to “act as if you have Celiac disease” until we could test me. I had done blood work almost weekly for months. She scheduled me for a colonoscopy, endoscopy, and biopsy of my intestines. The test wasn’t for three weeks later. But per her advice I had completely taken gluten out of my diet starting that day. It only taken a couple days for my hives (which I’d had from head to toe for the last 9 months) to start going away. My stomach started to feel better and my joints weren’t as achy. The tests came back negative. It wasn’t until a year later I was doing my research to discover you must have gluten present in your diet for it to show in tests. I have tried to maintains GF diet for the most part since then. I’ve noticed the dramatic difference it has when i consume it now. Fatigue,joint pain, I feel 6 months pregnant, brain is foggy, and not to mention the immediate rash. I’ve fallen off the wagon quite a few times the last couple years since I’ve opened my own business. I started doing more research recently and realizing the damage I could be doing to my body. I’ve been terrified to request the rest again since I had such a horrible experience with thelast test. I started waking up during the procedure…. Reading all these posts is making me want to get a official diagnosis! Any recommendations??

      • Colleen November 20, 2015 at 6:50 pm

        I agree completely! The only positive way to diagnose celiac is by an endoscopy and they take a biopsy other wise I wonder if it is an accurate dignoses.. You’re right it has become a fad.

        • Colleen November 20, 2015 at 7:25 pm

          I’m sorry if I affended anyone with my first reply! If you have celiac and you eat gluten, it makes the lining of your stomach smooth and nutrients don’t absorb in your body. It makes you drastically enemic. That’s what clued my dr. to biopsy my stomach lining. I have had celiac for years. I sympathize with all of you Celiacs out there. Thank you for the article it’s very informative. There evidently are more ways to tell if you my have it.

          • Debbie Wiles December 19, 2015 at 7:05 am

            Don’t worry about offending. My dad has just died from the devastating impact of gluten on his mineral and nutrient levels. The lack of initial diagnosis stripped his intestine of it’s villi and so reduced his absorption rates to practically zero. Add to that the number of times he was exposed to gluten and the terrible inflammation and consequent pain and diarrhoea he suffered had left him weakened and frail for a previously very fit 77 year old. A routine operation lead to his heart not having the strength to keep going and so he passed away. I’m just so sad that this disease isn’t taken seriously enough and so am making sure that as many people as possible know what a killer it is.

      • Jen December 27, 2015 at 3:23 pm

        Biopsy can have false negatives too.

    • Laura May 26, 2013 at 1:35 pm

      I had a gene test done and found that I have 2 gluten intolerance genes that together are the equivalent of celiac. I found it helpful knowledge to pass on to my family since they too could have inherited one or two genes themselves. Since then (a year ago) several have gone gluten free and feel the better for it. It makes for better family get togethers too since more people are conscious of it.

    • Debbie Munyon May 6, 2015 at 1:37 pm

      I have had celiac for over 5 years now and I have other health issues thyroid, heart attack last December, copd/cronice bronkitice, and I have been on streorids so much that my sugar levels went sky high my last visit in hospital that I can’t eat any type if sugar for 4 weeks and being a celiac person all bread , pasta, are made from rice, corn, potato and other flours and they make sugar so right now I can eat bread, pasta, rice, or potatos. So I live on vgs , fruit, and meat . Oh joy . Lol

    • Andria July 4, 2015 at 10:15 am

      I want everyone in my life to read this. It hurts me to go out with friends and see “that look”, the oh-she’s-on-that-fad-diet look. I understand your passion and I completely empathise with you. How immediately it hits , how long it lasts, how I feel. Thank you for this. I’m going to share it with everyone in my life so they can understand that I’m not trying to lose weight, I’m trying to save my life. Thank you for pouring out your soul, it certainly made a huge difference for me.

    • Cheryl clay January 30, 2016 at 7:03 am

      I am the mother of two daughter’s that have Celiac’s Desease. Each daughter is so different , that is why this desease is so hard. One has it internally she is 14 the other externally she is 28. The older one thinks I over react with the younger one but she has no idea how harmful it is for the younger one to ingest it. No one really understands this desease even if they have it, because everyone’s reaction is so different. My youngest immune system is so weak from this, any virus that passes by she gets it. But the one thing they both have in commen is that they hate for people to know that they have it. I do feel like people are a little more careful if you tell them they have the desease and that they don’t chose to live this way, at least not at 14!!!! I do wish though that people were more sensitive to this desease, that they treat people that have life long illnesses with a little more compassion.

    • Maggie March 3, 2016 at 9:19 pm

      Oh sweetie I can relate. I was diagnosed 15 years ago. I am now 62 years old and went most of my life not knowing. I can relate to your struggle. I think this is a very articulate and respectful way to help those who actually wish to know or to understand what it is like to live with a missing enzyme that helps process gluten in a normal way. Years back a friend invited me for dinner and assured me that there was absolutely no Gluten in the meal and that she had made sure of all ingredients. The main course was an eggplant lasagna. Well as you mention, I was nervous as you can imagine but since my hostess had gone to some length to accommodate me, I ate. Well little did I know that my ‘friend’ did not believe in Celiac Disease or Gluten intolerance for that matter. Well my dear, not long after getting back to where I was staying with some friends, I felt very ill and for about 3 days It was like I was in a terrible brain fog where I could hardly function. It was really frightening to say the least. My friends could not believe the effect the meal had on me. I later found out from that ‘friends’ daughter that her mom had no idea about Celiac nor did she believe there was such a condition. I was on a trip from overseas as well, so it was not a time for me to be sick. It is sad when people choose to live in ignorance or lack compassion and understanding. But as you say sweetie, there are those out there who truly understand and can appreciate your struggle. We live in a somewhat harsh world with many unfair opinions and judgements. So just take care of yourself so that you can take care of your little family. Never mind the narrow minded people. You do not need their approval sweetie. You will know your true friends through this process. Good health to you! x

    • Michelle March 30, 2016 at 6:26 am

      It’s just a simple blood test, so it is easy to ask your doctor for it. Also celiac disease tends to run in families, so I would recommend that your husband is tested first since it is so easily misdiagnosed in small children. Also, due to the various genetic factors involved with celiac disease, dairy products may also cause symptoms. If your husband or child does have celiac, the sooner you know, the better. I have seen celiac disease lead to serious health problems, including seizures and heart arrhythmia. It is also important to know that sometimes the test for celiac disease comes back as a false negative, so it might help to go on a strict gluten free and dairy free (no cow milk/eggs/etc.) diet for one to two months prior to being tested again, only exposing yourself to gluten and dairy again before being tested again. This being said, follow your DOCTOR’S instructions for being tested.

    • Paloma Ferrer August 23, 2016 at 7:21 am

      In my experience you get blood drawn first, so in your next visit to the doctor mention it and ask for them to add the celiac indicators to your usual test

    • Cheri Stutz September 4, 2016 at 7:55 am

      Thank you for this post.
      I too was misdiagnosed for years. The point came from Malabsorption and my bones started to break.
      I was tested and now they bypass my stomache with infusions for reclast.
      I also ended up with frontal scarring alapecia from the results of Celiac destroying my body.
      It is a messy disease, always watching what I eat, and constantly scouting to know where is the nearest bathroom.
      This has become less of a challenge because I follow my diet very closely.
      I as well get the brain fog at times, mood swings, and the fatigue.

      The upside is my blood sugar has stabilized, more restaurants are serving gluten free foods, and friends and family are very supportive.

      I hope that more people understand this is not a choice but a forever lifestyle that one must adhere to or the consequences are embarassing and as my doctor explained, could result in stomache cancer.

      Thank you for your blog

  • Alissa @ Breaking Up with Captain Crunch May 24, 2013 at 10:28 am

    Alysa, this is so spot on. I’m going to be sharing this. I get so frustrated because this wasn’t my choice, and I hate to be a burden on people. Thank you for putting it in words!

  • katilda May 24, 2013 at 10:29 am

    I wanted to stand on my chair and shout AMEN for about 98% of this post. I will definitely be sharing it with my friends and family. With that said, I think your comment about celiac vs. not eating gluten to feel better is a little insensitive. I have pretty much every symptom you mentioned (actually it was scary how well you nailed what happens to me when I get glutened) but I’ve never tested positive for Celiac. The doctor said, because of other issues with my immune system, that my tests will always be “inconclusive.” Gluten intolerance and gluten sensitivity and gluten allergy are very real things, and I don’t think you should talk about it like it’s different than having Celiac. We all struggle with the same things you mentioned when it comes to getting sick and eating out and social issues and being mocked, etc. I say we all support each other as part of one gluten free community! But keep sharing your words. You expressed a lot of my own feelings for me!

    • inspiredrd May 24, 2013 at 11:28 am

      Thank you Katilda, I should have been more clear. I wasn’t referring to true gluten intolerance, but to those who “try to eat gluten-free sometimes to feel better”.

      • katilda May 24, 2013 at 1:49 pm

        Gotcha! No worries 🙂 I really do think this article is so well written. Thank you!

        • chris May 27, 2013 at 5:59 am

          I agree with Katilda. It was a fabulous article overall but my back did go up a bit when I read the differentiation between celiacs/ppl with gluten intolerance and those “who try to eat gluten-free sometimes to feel better” … assuming that they are on fad diets.

          I don’t think gluten free is a fad diet. I think this is a new change that has come about because of recent research into the effects of eating modern gluten. If these ppl are sometimes “feeling better” it’s bc today’s wheat is a poison. Almost everyone (except for the human cockroaches who can eat anything and not be affected) will have symptoms from eating gluten. Of course, with some, the symptoms are not immediately life-threatening but health experts believe that gluten can cause inflammation and long-term health implications in everyone. inflammation is a known precursor to countless debilitating chronic conditions and diseases such as diabetes and cancer. Why shouldn’t we all try to eat less of it?

          I think your frustration should be aimed at those who misunderstand and call gluten-free diets a fad, not at those who don’t have any specific diagnosis but are experimenting with their health and rightly and happily noticing that they feel better when they eat less gluten.

          And yes, I speak from experience: I’m allergic to wheat. amongst other symptoms, my ability to breathe is compromised when I eat even a tiny morcel.

          Keep up the great writing!
          Peace and best of health to you.

          • BranRN May 25, 2016 at 7:04 pm

            After my daughter experienced a bout of black stool then bloody diarrhea with awful stomach pains, we final had a endoscopy and colonoscopy. The byopsy from the endoscopy revealed hypersensitivity to gluten, even changes in the deeper tissue. My niece has celiac disease but my daughter’s Doctor still is not quick to diagnosis her with celiac. Either way gluten has damaged her 14 y/o body enough to cause her to pass blood and she has NO choice to be gluten free or just say the hell with it and eat a hamburger. I’m sure that people who choose to be gluten free by their on free will to be healthier and feel better still does NOT know what people who have to be gluten free go through or feel. No one is bashing anyone here, but some of us are effected differently and are more passionate due to a diagnosis. A gluten free diet has helped but she becomes I’ll even when cross contamination occurs.

      • Stephanie May 29, 2013 at 7:22 am

        Alysa, I understood what you were saying. I have a gluten intolerance (my Celiac blood test came back inconclusive), so I eat a gluten-free diet, but I have a friend who eats gluten-free because it’s a “lifestyle choice”. It’s a bit annoying to me when we go places because she’ll say things like, “Oh, is that gluten-free? It’s not? Then I can’t eat it.”. She CAN eat it, she chooses not to. Big difference. I CAN’T eat it. If I do, I break out in a rash (predominantly on my arms, legs and around my mouth), I get joint pain, body aches, headaches, mood swings and fatigue. I feel like I got hit my a Mack truck, clubbed to near death with baseball bats, then rolled in fiberglass while fire ants are crawling up my arms and legs. That’s what it feels like when you CAN’T eat gluten.

    • Sandra May 28, 2013 at 5:46 am

      I totally agree. I don’t have celiac but I do have gluten intolerance as well as many other food intolerances – dairy, soy, nightshades, latex, some veggies, chocolate, most fruits, nuts, seeds. I have constant low energy. Sometimes I wish I had celiac so I could at least have some choice in what I eat. No one really caters to someone with all my food problems. Just sayin…

      • Nancy May 29, 2013 at 11:33 am

        Be careful what you wish for…Celiac Disease is a whole different ball game.

      • Stacey June 12, 2013 at 10:58 am

        With the fruits/veggies, gotta ask: have you looked into Fructose Malabsorption? Don’t wish for Celiac… not a good thing. I have Celiac, and it won’t solve any food issues… It will still mean no good food choices, especially if fructose malabsorption and other allergies/intolerances are in the mix… Just do the best you can.

      • Lori October 4, 2015 at 1:11 am

        I am celiac and allergic to most items on your list, fortunately I can eat nuts and seeds, for now, my list goes on however. There have been so few days without pain, they are my happy thoughts about 3 half days I think. No one wants celiac, no one would wish it on their worst enemy. I lost so many friend and moved away from people who knew me before, it was too hard to see them pulling away because it was inconvenient. I can no longer work. I don’t even look like the same person. You don’t want Celiacs ever!

      • Margaret October 10, 2015 at 11:56 am

        I am gf, dairy free, corn free, soy free. Beef, Cauliflower, broccoli, navy beans, bell peppers, carrots, avacado, and almonds all cause rashes, hives & bloating. Maltodrexton & carrageenan are also triggers. I feel like there isn’t much left i can eat. My 3 year old was just recently diagnosed as fructose intolerant. Eating at our house has gotten interesting.

  • Deana May 24, 2013 at 10:29 am

    Thank you for sharing that..I would love to print it and carry it with me every where I go and show it to everyone I spend any time with socially. My family has been very supportive but they want me to be positive about it all the time and they don’t understand that there are times where I want and deserve to be sad about being gluten intolerant. It’s a lifetime of being on edge and being a ‘pain’ at social gatherings. A lifetime of being hungry at pool parties because there’s nothing I’m ‘sure of’ to eat….most of the time I’m happy to know what my problem is, but sometimes it’s depressing and I get tired of hearing myself talk about being gluten free. Your blog entry made me feel like I’m not the only one who gets down about the whole thing, and also its comforting to know that I’m not the only one who gets bizarre side effects from being glutened. Thank you! Deana

    • Pamela May 25, 2013 at 11:18 am

      I am printing it!! I have a family cookout this Sunday 🙂 it will be so helpful for those…. more negative people 🙂

    • Sam May 26, 2013 at 6:50 am

      Not to mention the general irritation, sense of longing, and intense desire to just eat a damn doughnut or piece of pizza!

  • melissa May 24, 2013 at 10:45 am

    well said 😉

  • Tonggu Momma May 24, 2013 at 10:55 am

    I agree with the above comment. My daughter does not have Celiac disease, but she does have severe gluten intolerance. She reacts to gluten with multiple symptoms – the basics many complain about, but also tonic-clonic seizures (formerly known as grand mal seizures), infections (up to and including septicemia) and excessively low levels of IGH-1 (a growth hormone – she went from the 3% to the 50% on the growth charts after going GF). Before her diagnosis, which occurred prior to age two, she was hospitalized three times, took two ambulance rides and struggled with countless infections, other more minor health issues and massive brain fog. When I hear or read people diagnosed with Celiac belittle her challenging experiences, MANY OF WHOM HAVE SUFFERED FROM FAR FEWER SYMPTOMS, it hurts and angers me more than I can say. Not only is she mocked by others outside of the community, she is also mocked by those within the Celiac community. Something to think about…

    • inspiredrd May 24, 2013 at 11:29 am

      I truly wasn’t referring to gluten intolerance but to those who “try to eat gluten-free sometimes because it makes me feel better but then I cheat when I really want something”.

  • Jessie May 24, 2013 at 11:02 am

    I have Celiac Disease and when I read this I started to get tears in my eyes. Thank you. I love this post.

  • Erica May 24, 2013 at 11:31 am

    I had no idea there was a diet fad of being gluten free. It seems like people make fads out of anything and it’s really very stupid. A friend of mine is dealing with the same thing except it’s her 4 year old daughter who has Celiac. She is also Autistic. I am only a little aware of how difficult her restricted diet must be like. They live 4 hours away from me so I am not there long. Although I am constantly searching and finding Gluten free items and I send her pics to see if she has seen the product and if she approves of them. I feel like it’s the least I can do to help her by being another set of eyes to products she may be able to use to make her life just a little easier. She is a single mom with a 2 year old also. People treat being lactose intolerant the same way. My dad was diagnosed with being 3 times more lactose intolerant than the average person. Which means he has to be very careful when eating out. Even steamed veggies….was cause for him to take medication because they had butter on them during cooking. Good luck with dealing with this disease. Keep writing there are people who just don’t know.

    • jazz May 25, 2013 at 4:58 pm

      if her child is autistic she should try putting her on a gluten and casein free diet. there are books on the connection so ill spare all the details but i worked with an autistic boy who could barely chew his own food when i started with him. around the time i started helping out his family was removing gluten and casein (lactose) from his diet. we saw HUGE differences in a very short amount of time. if someone slipped (grandma was visiting and accidently put a little real butter on his gluten free toast and he was zombified for a coupla days from it. many stores will print out lists of all their gluten and casein free items

      • Lisa May 27, 2013 at 10:58 pm

        Casein and Lactose are different things. Casein is the protein found in milk and lactose is the sugar.

  • JulieK May 24, 2013 at 11:38 am

    I have had to “go gluten-free” at various points in my life (I’m on my 4th round) to “clear up” certain health issues. I don’t have a true gluten intolerance, it’s more just elimination to be sure, or for my nursing children… and I can tell you it is SUPER hard to eat gluten free!!! You are so right about the social aspect – I LOVE to eat and I love social events with food – and all that is pretty much closed off once you’re gluten-free as so much of our foods include gluten. NOT to mention the horrible cravings I get in the first week of going cold-turkey gluten free. I’ve never gone more than 1 month fully GF but it’s always been difficult. I cannot imagine a lifetime of dealing with this disease and people need to stop giving CD sufferers a hard time!!!!

  • Cass May 24, 2013 at 11:47 am

    If you suspect celiac, there is absolutely NO reason that your primary care provider should not order celiac testing for you. Guidelines suggest if you have even 1 primary care relative with celiac you can go straight to small bowel biopsy. Stand up for yourself and your family!

  • Paula May 24, 2013 at 11:50 am

    I am not Celiac, but have one of the many forms of microscopic colitis. When microscopic colitis is triggered, food sensitivities are triggered at the same time with gluten being the primary sensitivity. I and others like me suffer with all the symptoms you do. I recently went to a family gathering for Mother’s Day. I get so “angry” for all the same reasons you mentioned. It is always obvious when others do not have a clue as to what gluten is, and it’s scary. I recently went to a finer dining type restaurant and specified I could not have gluten. I ordered a steak and requested nothing be put on it, a baked potato and cooked vegetables. What a shock to watch as my meal was served. The steak had a breaded fried onion ring sitting right on top of it. I had someone remove the onion ring and ate the meal, but suffered for a week because of it.

    I want to thank you for posting this.

  • Gluten Dude May 24, 2013 at 12:08 pm

    I want you to know that you absolutely nailed it.
    I want you to know that I’m sorry you suffer so much.
    I want you to know that a family in PA thinks the world of you.

  • Jenny May 24, 2013 at 12:10 pm

    (there is poop talk in this post) Hi, my son who is now 19 months is considered celiac by his doctor even though we never tested. He had symptoms at just two months old (exclusively breastfed) including fussiness and constipation ( ten days) my gluten intolerant sis suggested I cut gluten out of my diet. Results were immediate and stunning. Pooping daily, followed by several days of crazy mucus poop. I challenged by eating a by eating a bunch of gluten a month later…and the mood issues and constipation were there immediately. Followed by the mucus as soon as I cut it out again. Months later we decided to remove all gluten from our home after a small exposure (cracker crumbs in the peanut butter, that I ate and then he breastfed) caused us to see blood in his stool.
    I appreciated your article so much, but I can’t imagine subjecting his system to gluten long enough for testing since I know what it does inside his body. That would be so cruel. And I certainly had no idea what was going on when we stared this….just wanted him to feel better and he does. I’m just not sure it Always makes sense to test. We are happy with his pseudo celiac diagnosis. For us it’s enough just to know how to keep him safe. Thanks, Jenny

    • inspiredrd May 24, 2013 at 12:12 pm

      Oh yes Jenny, FOR SURE. If it’s obvious that this is the issue and you are already being careful, there is no reason to be diagnosed officially. Good work!!!

    • Nancy May 29, 2013 at 11:38 am

      Those of us with Celiac Disease and other gluten issues are so totally used to talking about toilet issues LOL

    • Jenn May 6, 2015 at 3:57 am

      Jenny, I had to read this a few times because I thought maybe I’d written a comment on this post already. Your story is so similar to mine! My son was the same way! 8 1/2 years later he is happy and healthy on a gluten free diet. We did end up testing through Enterolab before he turned three I think. They test using a stool sample, and didn’t need him to eat gluten like a regular challenge would. You know your son. You see his reactions. You know his improvements. Write them down, for the days you doubt. 🙂 I say that my son saved our lives because through that I found that I had celiac (as did my parents and siblings). These little dudes are blessings. 🙂

  • Jennifer May 24, 2013 at 12:13 pm

    Thank you for your perspective and insight. I hope that you, as a dietitian, can be a huge help to other celiac sufferers out there.

  • ~mel May 24, 2013 at 12:29 pm

    Bravo for writing this! You have put into words what so many of us with Celiac feel and think. Dinner parties are the worst. It’s hard not to feel slightly put out when friends who KNOW you have Celiac think nothing of of inviting you and your husband for dinner only to find lasagna (the regular kind) is the main course. It’s awesome feeling like you’re putting someone out because you can’t eat what they have made. (sarcasm, of course.) Or, how awesome is it to have to keep a little stash of food in your purse for when you get invited to events only to find you can’t eat anything there? I do get tired of apologizing and reminding and not being taken seriously. I actually met someone recently at a party who, after overhearing someone asking me about Celiac said “Oh, I don’t believe in any of that gluten free BS.” I couldn’t help but lay into him.

    My 18 year old daughter was diagnosed yesterday after many medical issues. Oddly, she was tested in 2009 and it was negative but her new doc says that false negatives are unfortunately very common when testing for Celiac. I wonder how many people out are suffering a myriad of symptoms and received a false negative?

    • Sam May 26, 2013 at 6:59 am

      A ton. Getting a positive celiac diagnosis is difficult, and depends on a lot of factors. Many people suffering from celiac don’t produce the antibodies needed for the bloodtest, or have damage to the intestine in a different place from what was biopsied. My advice to those people is always, get tested, and if the tests come back negative, go gluten-free. If the symptoms begin to clear up, then you’ve identified your problem.

      I have an in-law who was diagnosed with a wheat allergy (not celiac), but who refused to cut wheat out of her diet because she found it hard to do, so she has been stunned that all of her health problems haven’t cleared up with medication.

      There’s a definite common sense factor involved. If wheat or gluten makes you sick, don’t eat it. If you eat it, you will get sick.

      • Kristen May 26, 2013 at 12:24 pm

        I feel horrible when I eat gluten, you’re spot on, and I have so many of the symptoms of Celiac, but nothing ever came back positive when I took the antibody tests. Is there a genetic panel we should be asking for?

        Just wanted to say this article is amazing and for us that have to go GF as a medically necessary component of our lives. We are with you. I am so sorry for the isolation that this disease and the constant fight we have with food. I can’t tell you how many times I have cried. Thanks for allowing us into your heart today.

      • ~mel May 27, 2013 at 3:57 pm

        Interestingly, it was an enlarged spleen that led us to test again – but only after they’d done every other blood test and scan short of a bone marrow biopsy. Her doctor was perplexed and thought it might be worth looking for IgA again. Thank goodness she did.

        My daughter is in the denial phase right now so it will be a process.

  • jodilee0123 May 24, 2013 at 12:59 pm

    There is gluten in EVERYTHING! EVERYTHING! EVERYTHING! My daughter is gluten intolerant, very mild…and that’s hard. very hard.

  • Lisa May 24, 2013 at 1:02 pm

    A comment on the false negative test — the first test that my dr. did on me to check for celiac’s was to look for IgA (an immune globulin that is increased in many people with celiac’s). Unfortunately, I was born with IgA deficiency, which means that I would be negative regardless of whether I have celaic’s or not. Surprise!
    I am a Type 1 diabetic, and celiac’s is very common in people with autoimmune diabetes, so it’s kinda a routine to screen for celiac’s in this way. However, because I have no symptoms, my dr. suggested to forgo the next line of testing, which is much more invasive (biopsy)

    • katilda May 24, 2013 at 1:52 pm

      This is exactly that they told me! About the IgA. Kind of disheartening to not get a final answer on the celiac thing other than “you can try going off gluten…”

      • Theresa L May 10, 2016 at 7:24 pm

        I have had the gastroscopy to see in my intestines as well as do the biopsy 4 times now. Honestly, it’s easy. They require you to fast for like 8 hrs then they knock you out with a short acting anesthetic. You are unconscious for like 15 minutes. You wake up feeling a bit fuzzy but that’s it. I am Celiac. Diagnosed at 45. Minimal symptoms, but very damaged internally. At my 4th gastroscopy the GI specialist was finally able to tell me I am very well healed. It took over 4 years. My antibody count went from 440 (!!!) in my first blood test to 3.4 today. I agree with everything in this post. Keep up the fight, everyone responding here!

    • ~mel May 27, 2013 at 4:10 pm

      @Lisa: My husband is diabetic and feels better when he doesn’t eat gluten simply because ingesting gluten spikes your insulin production and makes it more difficult to keep your blood sugar stable. Sounds like you might have several good reasons to avoid it.

      Good health to you! 🙂

  • Leah Renee May 24, 2013 at 1:07 pm

    I love this article. I was diagnosed 11 years ago and cried on and off for the entire first year. I didn’t want to go out to eat anywhere because it was either too difficult to order, I seemed like a giant pain even though I HAD to be so specific, or I just couldn’t tolerate smelling the garlic bread at the table. That alone made me cry. At 21 years old my diet consisted of pizza and burritos and bagels and sandwiches. I thought I was going to actually starve! Obviously it’s gotten a lot easier not only out of practice but now that the marketplace and people are a lot more educated on it and there are options that were not there before. I really appreciate your article and get it 100%. I think the ‘fad’ reference people use is, like you said, a slap in the face and totally annoying. We didn’t CHOOSE this. 🙂 xo

  • Robin May 24, 2013 at 1:45 pm

    I too feel your article except….I have a gluten intolerance that makes me more than ill. I have all the symptoms you have, but add in diarrhea up to 10 times a day, heartburn, neurological symptoms etc… I have Collagenous Colitis. I cannot have gluten, soy, or oats. There are many, like me that have many more intolerances with this disease. There are many reasons out there for going gluten free; if it makes someone feel better (who could be simply undiagnosed), helps someone lose weight, or like me completely change my health and life, or as with Celiacs, (potentially be life threatening). I am happy the word is getting out and more and more doctors, restaurants, and product manufacturers are getting a clue! Yes, FDA should regulate products out there, but most of us, for whom it is a very serious condition already know to steer clear of processed foods anyway. You had good intentions, and you expressed many feelings I have with the exception of…I hope everyone gets on the gluten free wagon and forces the FDA to deal with these companies. What you said is like saying “if you don’t have high cholesterol, you shouldn’t concern yourself with not consuming saturated fats”.

    • Robin May 29, 2013 at 9:49 pm

      Hi Robin,

      Do you have any good resources on Collagenous Colitis? My daughter can’t have gluten, soy, buckwheat, oats, soy or peanuts… they ruled out Celiacs, but I’m still trying to find answers…

  • Kara May 24, 2013 at 2:10 pm

    very good post! Your descriptions are very well stated. Trying to “explain” it can sometimes be the hardest part of educating friends and family who still, and probably never will “get it”. Thank you!

  • Elizabeth Hare May 24, 2013 at 2:34 pm

    Bravo! Great post. It took me a year after my diagnosis of gluten-intolerance to go totally gluten-free, or should I say, grain-free! One week down and my colour is back in my face, my circulation is better, my allergies have subdued! My oh my, why didn’t I do this sooner? Well, as you may suspect, it’s because family and friends have seen me try to remove all kinds of foods to which I am sensitive and then see me cheat! So, they haven’t taken me seriously. Or, they’ve told me to wait until after the holidays – and do cheat on the holidays so you won’t upset your hosts. My time is now … I will speak out and I will stay gluten-free … I deserve it. Don’t you?

  • Bill Donnelly May 24, 2013 at 4:49 pm

    Disclaimer: I don’t have celiac or gluten intolerance.
    My wife does, however, and I’m her wingman on everything. I see what happens when she gets “glutenated” as we call it, and as you describe, it’s rough.
    But together, it’s easier to combat the peer pressure in many settings. If she gets croutons in her restaurant salad, we’re not going to stay for dinner just because I’m comfortable. We’re walking out, period. At least twice, I’ve caught a waiter’s mistake that she missed. And with family or friends, they all know they’re on my shit list just as much as hers if they give her any grief about it.
    All you other husbands, wives, etc., make sure you’re doing everything you can to help out your gluten-free partner.

    • Lisa May 29, 2013 at 4:15 am

      Bill … what a wonderful partner you are. All the comments have helped me really understand how one morsel is dangerous. There is no cheating if you don’t want to be in pain. Thank you all for sharing and enlightening us all.

    • Di May 29, 2013 at 3:08 pm

      Having been consumed by this disease (that I know of) since the 1970’s.. it might as well have been the 1870’s for the total amount of knowledge through the medical field… what I have found to be the most difficult area to deal with is: lack of support and lack of sincere appreciation for what I go through.
      Now, switch to 2013 and what is my biggest challenge… lack of support and the lack of sincere appreciation for what I go through 24/7.
      But, I have learned to be an island unto myself and stand tall and strong. I even talk to our state officials, local officials, restaurants, food vendors, and people who are staring at the grocery shelves with that shocked, blank look in their eyes. When I softly ask if they are looking for GF products, 99 out of a hundred say “yes, my _____ was just diagnosed and I don’t have a clue where to start.” It’s then I turn into a teacher and begin the lessons on ingredients, research on line that is dependable and that every time you go shopping you must look at the ingredient list of the products even if they were okay the last time.
      Then I hit them with the medical, health products, beauty products, supplements and prescriptions. And THEN the energy drinks that contain gluten along with alcoholic beverages. It’s a crash course in a half hour, but profitable. Then I hand them my business card and tell them they are free to call and ask any questions. If I don’t have the answer I can refer them to someone who will.
      Also… cross contamination is a health-robber who dwells in your cupboards, on your counters, in jars used by others, on cutting boards, in baking pans… beware.
      Support by friends and family is a huge plus. They will watch your back and your food. Be a support to someone you know who has gluten intolerance or celiac or any other food sensitivity… you could be in the position someday, crying out for help and support.

  • Diana Abbott May 24, 2013 at 5:31 pm

    This blog is speaking for me as if the words came from my heart and mouth. I would like people to understand that Gluten Intolerance is an auto immune disease every bit as serious as M.S. or Lupus. It is just as unpredictable and just as painful and should be treated as such by both medical professionals and the community. Thank you for saying what I so desperately want to express on a daily basis.

  • Jess May 24, 2013 at 6:20 pm

    Thank you so much for describing what’s is like to have Celiac Disease. I am going to share this over and over with family and friends. You beautifully stated what I so often feel.
    All the best to you!

  • Jennifer May 24, 2013 at 6:56 pm

    I was so happy to read this. I too feel exactly the same way and
    no one can possibly understand unless they are living it. Thank you so
    much for sharing! ❤

  • KDJames May 24, 2013 at 6:59 pm

    I’ve never read a more accurate post about Celiac disease! Thank you thank you! This weekend is my 3 yr ann. of my DX. It’s been a sad week with all that’s been going on. I’m so thankful for the strong bloggers we have in the Celiac community! Thank you

  • Jennifer May 24, 2013 at 7:06 pm

    This sounds like I wrote it. I can relate to it all. The gluten trend is nice because more restaurants are offering more items but I’ve learned that what they think is gluten free is not the same as what someone with celiac would. I ordered gluten free pasta from a restaurant that advertises themselves as gluten free. They brought me my dish with a nice big piece of garlic bread on top of my noodles! I had to wait for them to remake it (at least I hope they did) It’s a nightmare almost every time I eat out so I try not to. Nice to know I’m not alone. Thanks:)

  • Alison May 24, 2013 at 7:38 pm

    Thank you to the lovely soul for writing this post and sharing your story about Celiac. It was spot on. My life has changed for the better, surrounded by positive people that understand and respect and support my ‘different’ foods, (I’m sure we have all lost friends along the way because of our Celiac, but that is okay, we made new ones that are better for us 🙂 You took the time to write and share and be vulnerable with your feelings and your life. It was truly brave and courageous and I commend you for that. Thank you for creating this circle on this page of all of these wonderful people who are sharing and understanding themselves and each other. Beautiful energies. If anyone out there is having a hard day because of this, because of Celiac, sending out love and healing and please know that we are in it together. peace’n love, Alison

  • Dee May 24, 2013 at 8:21 pm

    Alysa, you described what I feel everyday! I was crying while reading this knowing exactly what you were discribing. My Ex-Boyfriend would say to me in front of a server “now go through your spiel” and roll his eyes, maybe joining the server with the eye roll. Thank you so much for knowing how I feel! Wishing you the best of health on this journey we didn’t choose.

    • ~mel May 27, 2013 at 3:59 pm

      I’m glad you said “ex.” What a jerk! 🙂

  • Sarah May 24, 2013 at 8:36 pm

    Thank you for putting into words the way I feel. I was diagnosed one year ago this August and it still gets me down a lot. I miss the freedom of being able to eat wherever I am. The eye rolls when I mention that I have celiac (or else the blank stare) are the worst. I just never go out to eat anymore. My husband is very supportive, but the rest of my family doesn’t make a whole lot of effort. It’s nice to know that there is at least one other person who gets what I go through. Thank you.

  • FeistyIrishWench May 24, 2013 at 9:04 pm

    My sister got wheat out of her diet because it was causing inflammation, joint pain, and contributing to her mental health issues. She has more mobility, flexibility, better sleep, come off all anti-anxiety and anti-depressant meds.
    For her, it’s not about feeling better, it’s about feeling normal.
    I first heard of celiac several years ago when a former boss had to veto a lunch location because of his dietary needs. I have a hefty respect for those who can’t have gluten – it’s everywhere.

  • Mandie May 24, 2013 at 11:57 pm


  • IrishHeart May 25, 2013 at 5:44 am

    I want you to know that I stood up and applauded you this morning!
    Your thoughts are true and honest and valid to me and I say: “Amen, little sister!!”

    Big cyber- space hugs to you!!

    • inspiredrd May 25, 2013 at 7:49 am

      A comment from IrishHeart! My day is made 🙂 Thank you!

  • Anne May 25, 2013 at 7:04 am

    I want you to know that I, too, think you nailed this. I shared it on my Facebook page in hopes that all my family and friends would read it.

    I want you to know that we all feel you-whether we are gluten sensitive (me) or full blown celiac. This has to be one of the hardest diseases to deal with-because so many times you feel like it’s out of your hands. You think you are doing so well, and then out of no where, something hits you, and you spend the next couple hours (at least) feeling as if your insides are being ripped out of you, and burnt up in the process.

    I want you to know how much I appreciate you sharing such a personal take on what this is all like. I think we all have wanted to scream everything you said here in the faces of our friends and family when they say “a little bite can’t hurt…or just one piece isn’t going to kill you”….

    I tested negative for Celiac (but was gluten free for over 2 months before I had testing done). Nobody felt the need to tell me to eat gluten before all the testing. They put me on an elimination diet before…well, that was smart. I’ve been dealing with it for 6 years, thinking in the back of my head “I tested negative, I should be fine, it’s all in my head”. Recently, I was re-energized by a new acquaintance to take control of my health…and I’ve been totally gluten free for almost a month. It’s a daily struggle, and one I will have to live with for the rest of my life, if I want to stay healthy. I’ve dealt with the anxiety, Dr Jekyl/Mr Hyde stuff, lethargy, exhaustion, rashes…you name it. I don’t know why it has taken so long for me to commit, but I have to say, I feel about 70% better right now, and that is saying a LOT.

    Keep up the great work through your words…they are powerful!

    • Sam May 26, 2013 at 7:02 am

      Don’t let the negative test get in your head. It’s so common, especially if gluten was cut out of your diet. Just concentrate on the fact that gluten makes you sick, and be determined not to give in to social pressure, or that little voice that makes you think it’s all in your head. It’s not.

  • Michele McKiernan May 25, 2013 at 7:27 am

    Thank you so much for you very honest explanation of this crazy illness. I could not have put it into words any better. It was like you are inside my head feeling the exact same things as me. Those who do not have the disease will never truly understand how hard it is. I reposted this in hopes my mother would read it. She is the one person I wish would try to understand and I am certain never will. Thanks again for making my day a little brighter with your wonderful words.

  • Carma May 25, 2013 at 7:37 am

    The best thing I have found for accidental glutenings (or non-accidental, if someone does cheat on purpose) is activated charcoal. It really helps with the bad symptoms, at least the digestive ones.

  • Mrs. M. May 25, 2013 at 7:47 am

    Do you know about Red Apple Lipstick and make-up? https://www.redapplelipstick.com/ It’s Gluten Free, made in the U.S.A. and you will love it! I’ve been GF for two years, dear hubby much longer. I finally have good digestive health, I lost weight and feel fantastic. More and more restaurants in my area have GF options, but mainly we stick to eating fruit and veggie salads, chicken and fish. Thanks for sharing your story Alysa.

    • ~mel May 27, 2013 at 4:00 pm

      Thank you for the link!

  • Katrina May 25, 2013 at 8:08 am

    I really appreciate this article. I don’t have Celliac’s, I have Multiple Sclerosis. I am treating my disease via diet and nutrition. The most dramatic positive effects I have had are because of completely removing gluten from my diet. If exposed, my MS symptoms – which are currently nearly non-existent – return in full force: balance issues, debilitating full-body joint and muscle pain, brain fog, clouded vision, and severe mood mal-adjustment. The choice for me is simple: gluten versus the ability to function.

    I am a pain in the butt at restaurants. I emphasize my issues with the staff, but am always pleasant and willing to answer any questions, etc – I consider it an opportunity to advance knowledge. I have, however, argued with managers, sent back entire plates of food, and even gone so far as to refuse to pay for food. My health and well being are way more important to me than playing along or taking a chance.

    I can relate to your comment about eating establishments jumping on the “gluten-free bandwagon” in order to cash in on the “trend” and being irresponsible in the process. This last week I was a guest of friends at Granite City. Granite City has recently unveiled a new “Gluten-Free Menu” of which they are very proud. A paragraph at the top front of the menu explains that although all the ingredients in the foods on the menu are gluten free, the restaurant uses “shared preparation surfaces, shared utensils, and shared cooking surfaces” and therefore cannot guarantee that your order will in fact be free of gluten.

    I wish there was some understanding of how serious this type of condition is… It is not trendy for some of us, it is a matter of life and health. Thank you for your article.

  • Mayghan May 25, 2013 at 8:12 am

    Honestly this is fantastic, I found out I had a incredibly high intolerance to gluten through a naturopath my old doctor I went to was not helpful at all an kept doing tests and said I was fine, my next test to get done would’ve been the scope which would’ve showed me the truth but I wanted more then just a diagnosis I wanted help to heal myself from all the damage that was done. I have since switched my normal doctor and have one that is much more understanding of celiacs and said flat out to me if you cant eat gluten and it makes you sick you have celiacs it was such simple words but made me feel so much more at ease was nice to finally have someone who is in the medical field understand me. I am still finding ways every day to deal with it and love reading articles like this, thanks for sharing

  • Shirley @ gfe & All Gluten-Free Desserts May 25, 2013 at 11:09 am

    Alysa, I appreciate you sharing so openly in this post. Obviously, it is resonating with many. Those of who live 100% gluten free for our health–whether we have celiac, gluten intolerance/non-celiac gluten sensitivity, or any other condition that benefits from a gluten-free diet–totally get what you are saying. However, there are many who never will understand. While we can educate them if they are open and certainly band together to protest the Disney episode, etc. (and we should!), there are some who will never understand. Over time, we learn to live with that and to not fixate on it.

    Sometimes people eventually have some understanding when they see what we go through after being “glutened.” I’ve written about the grieving stages we go through and how we can flip flop back and forth between stages (particularly if we’ve been doing great and then get glutened, get excluded from a social event by a dear friend, etc.). The end goal is always embracement of living gluten free (and sometimes learning to live “more free” for our health in general and to avoid those unsafe “gluten-free” products) and many of us get there, but it can take some time.

    After 10 years of living gluten free, I’m not worried about what others think any more. I’ve learned to not take it personally when folks don’t get it, all the while ensuring my own safety. (It helps to know the categories of folks you are dealing with … clueless but well meaning, hostile, totally get it, etc.) It’s important to “feel the feelings” and paint a very accurate picture–as you have–but once we do, I feel like we have to sort of move on and do what is best for our health, physically and emotionally. I know that the more I focus on something, the more it expands as the saying goes.

    I especially appreciate you being honest about thinking it would be easy because you were a dietitian, but finding out that it was not. I think that are many dietitians who are not gluten free who do their best to help others who are gluten free, but unless they are gluten free themselves, they won’t ever “get it.” They might not even give the best guidance because they can’t truly fathom all the concerns one has to face when being gluten free.

    Thanks for this post, Alysa. I shared it on my gfe–glutenfreeeasily Facebook page.


  • Kate May 25, 2013 at 11:29 am

    Everything you wrote here is exactly how I feel except that my celiac symptoms don’t start until about 24 hours after I get glutened. So if people want to “test” me to see if it’s an immediate response they will not see any bad consequences right away like they would with a life-threatening allegry. Nevertheless gluten has caused me to have life-threatening symptoms before sending me to the hospital more than once. I wish people understood that and took it more seriously. I don’t trust very many people to prepare me GF food because I had a family memeber try to sneak gluten into my food to see what would happen and then declared I was “faking” because I didn’t immediately go into convultions. Fortunately this person was staying with me and was around to see the symptoms start the next day (and they apologized profusely thereafter). But it makes me always leary that others have the same mindset.

  • Debbie May 25, 2013 at 11:33 am


  • Shannon Davis-George May 25, 2013 at 12:23 pm

    I so relate to this! I don’t test high enough with the blood test to truly “qualify” as having celiac disease, but I know there’s a problem with gluten. I feel horrible, swollen, tired, anxious, and depressed after I eat it.

    However, because I don’t technically have celiac disease (according to the test), then too many people in my life blow it off. And I can be bad about “cheating” with gluten…that has got to stop in my life! But it’s really hard when people aren’t willing to support your decision to avoid it.

    Alysa, I feel your pain. I hate having to talk about it. Social situations and holidays become really stressful for me unless I’m the one buying and cooking the food. It makes me not want to visit my husband’s family, because they take it less seriously than mine.

    • Rosemary May 26, 2013 at 1:57 pm

      Shannon, if you cheat and eat gluten, no one will ever take you seriously. If you want people to support your decision then you have to show by your actions that you are serious.
      Good luck.

  • Johnna May 25, 2013 at 1:32 pm

    This post is so incredibly insightful. I think often about people who assume I’m eating the latest fad diet (I’m not, I have Celiac) and those who think they can lose weight/feel better/leap over tall buildings if they remove gluten from their diet. As the fad fades, we will have our work cut out for us perhaps more so than now. Thanks for sharing such an important look into what it’s really like.

    • Linda December 16, 2015 at 8:57 pm

      Hi, I truly appreciate reading these post. I’ve had so many symptoms that came out of nowhere and it is helpful to make the connection to my Celiacs. It is hard to go to gatherings and yes lasagna is usually the main course. I have learned to have gluten free snacks to eat in the car on trips. It is so hard at times because everything prepared seems to have gluten. I got delayed at a small airport until the next evening. They provided meals for us but it was sandwiches. I couldn’t eat and the meals on the plane the same thing, gluten!! I’m not well this week i went out to a restaurant and ordered a salad with no croutons. Of course it came with croutons. Long story short i explained to these people at least 6 times about getting sick from gluten etc… They assured me they made me a fresh salad. I had 4-5 bites and there was a crouton. I don’t like being lied to and will report the restaurant. The problem is they don’t take it serious. More information has to get out there to the food industry.

  • Michelle Traub May 25, 2013 at 3:39 pm

    Great post!

    I wrote a blog about this years ago: http://www.webhealthwriter.com/blog2/gluten-free-is-not-funny/ It saddens me that people are still so lacking in compassion for those with dietary restrictions.

  • Tracie May 25, 2013 at 3:55 pm

    Totally agree. Every time we go to a restaurant and ask what the gluten free options are…I see Grace flinch out of the corner of my eye. But she is getting better at it. She just dosent want to burden everyone. The one thing I hate is the way these places are raking in the cash with up charges. I know the products are more expensive but the profit margin should not be that much more when they are already making a decent profit margin normally. Give us a break. It’s
    hard enough as it is. I wish they were not trying to profit from it. My 11 year old even notices it, ” mom it’s $2.00 more.” She has enough to worry about just figuring out what she can order. Although she has been Gluten Free for almost 5 months and there is a big difference. I am anxious to see what her blood work says. I know she feels better but I want the blood work to reflect our hard work (it’s the nurse in me). I will say our School district in Lees Summit, Missouri is amazing with food allergies. They accommodate all of her needs and are trained to do it correctly. Celiac definitely changes your entire life and its hard…and I’m not even the one with the disease.

  • Chris May 25, 2013 at 7:45 pm

    Thank you for this…I am a Celiac without symptons, it was found and diagnosed by accident. I am forever thankful but every day I hate it. I take no chances because I can’t. I hate the glazed over look in a waitstaff eyes when you say “gluten-free” or people I work with who just say “just cheat this time it will be okay”. I am thankful for understanding family and friends and just waiting for the rest of the world 🙂

  • Clarice Swanson May 25, 2013 at 10:45 pm

    If we can be of help to you, our meats have always been 100% gluten-free. http://www.bluevalleymeats.com
    Here’s how we do that:

  • Kay May 26, 2013 at 7:49 am

    Oh thank you for saying this so eloquently. I’m too am a celiac but also have the same, if not worse, issues with corn and rice. People think I’m crazy — or lying — about my food issues and it has taken me years to accept the fact that people just don’t get it. When they want to talk about my “diet” I just say I’ve got it taken care of, thank you, then I change the subject. I should just print out your post and hand it to them. Um-m-m-m, now THAT’s an idea from an un-fogged brain. Thanks again.

  • Cynthia May 26, 2013 at 8:01 am

    Thank you so much. I find this post comforting. This has been a difficult journey and as much as I try to be positive about it, it’s hard. It has only been 8 months since I’ve begun my battle, beginning with a few weird symptoms, reaching a point of surviving only on medical food and slowly beginning to heal and be able to eat again. It’s hard to put on a happy face every day when every time I face food, it’s depressing. Every time I eat, I know it’s going to be painful and I will feel awful for hours or days. For me, it’s not just gluten, it’s a lot of things… that are in everything. This is so true that it affects my whole self, on top of digestive distress, my muscles and joints ache, I’m exhausted, I get moody and anxious. People don’t understand that it’s not as simple as “just don’t eat gluten”. I know I’m not alone and it comforts me that someone understands.

  • Gwen B. May 26, 2013 at 11:39 am

    I’m sorry you’re all going through this. Why not tell people you have celiacs disease or severe food allergies instead of using the term gluten free if their reactions to that term make you uncomfortable? Personally, I don’t care what others think about what we eat. Why would you?
    No one should be eating the processed white toxic flour and sugar present in a Standard American Diet. We all feel better when we eliminate them, regardless of what we call our food allergies. I don’t need someone’s approval and I don’t care about some test. Elimination proves we’re better without it. the end!
    I guess i do not understand why you need to label any of this or give a crap what anyone else thinks about this.
    I simple “I feel very sick when I eat that” should suffice. The people who matter in your life should never have a problem with that otherwise the dynamics of your social life are what should be examined, labeled and eliminated instead. Just sayin’

    • Linda December 17, 2015 at 4:53 am

      Family and friends don’t understand that any trace amount of gluten starts a reaction. They try to say taste it, just a small bite. In some cases you can’t trust people. One thing I will do from now on when i order a meal contaminated with gluten is hold onto it until my new meal comes out. I’m tired of being sick due to ignorants.

  • Good Post about Gluten Reactions | Stephanie Bird • Professional Portfolio May 26, 2013 at 12:35 pm

    […] It’s not. Here’s a good article talking about just that. […]

    • Teresa Eggli December 29, 2015 at 7:13 pm

      Thank you for your post… I too react very differently! I get like hay fever allergy symptoms…super congested, swollen eyes, because my sinuses are plugged…it causes asthma…not to mention I feel like I have a brick in my belly and everything stops moving…. Almost a year ago I had a gall bladder attack… Now anything with wheat gives me insane heartburn …I had a highly inlightened person tell me wheat and dairy in my case were causing inflammation. He felt the attack was from me ignoring the inflammation problem…I didn’t drink or smoke or even eat fatty fried food…but I loved baked goods, coffee, sugary sweet stuff…I do have a health issue with migraines that didn’t help as well. I off and on would try and be “good” of coarse I felt better but if I went “off” I got used to feeling like crap! I’m not sure if I am a celiac but I am for sure wheat intolerant, it has made a huge difference going wheat and gluten free! Now my stomach, even my throat will react instantly since gall bladder attack to wheat with gluten. My eyes are hardly ever swollen, my sinuses are clear and I haven’t had to use an asthma puffer in moths and months! I’m trying hard to get my family to try, I feel tons better, lost lots of weight I hated I had gained from eating badly. I will never go back, it’s been a year of trial and error but there is so much help out there now! I gave in and tell people I have allergies …it just makes it easier…but it is frustrating because there is gluten and gluten derivatives in a lot of food! Just like MSG, I’m crazy allergic to that too…so we stay home and make our food from scratch!

  • joyce May 26, 2013 at 6:28 pm

    Hi there,
    I have only had the blood tests, I refuse to have the biopsy. My doc told me to come off gluten to see how I felt, (after lots of blowel problems, I didn’t know about all the others yet), and I could not believe the improvement, even though I was still getting gluten but didn’t realise it. I would say I am 100% G/F now, and as hard as it is, like others here I am pleased I now have answers to my health issues, especially the depression and brain fog and immune problems, etc etc…… I begged a dr years ago, over 20 years now, to test me and he refused, if I had known how serious Coeliac is I would have pushed it further as it was to be another 17 years, and I was in my 40’s when diagnosed. The first Coeliac Society Show I went to, the doc who spoke seemed really on the ball and full of empathy and said “if you come off it and feel better, stay off it and don’t worry about the biopsy,” as he believed it to be too cruel to put people through it after going off gluten. I agree 110%!!! The next year, the dr who spoke totally said the oposite, and believed that if you have been off gluten you can have a little now and then and have actually come across people who do this. I say…..tsk tsk tsk…..is a little arsenic good for us now and then???? It was so good to read what is written here as I also have MCS (multiple chemical sensitivity), so people think I am a real nutter…..food problems and have to leave if someone has perfume or something on. So no….we are not alone, there are heaps of us out there/here, ready to support one another. I was saddened by a lady on F/B who opened a page for Coeliacs and told everyone they could have Mars Bars, I gave my opinion on the subject as there is malt in them, but obviously her views were along the lines of the 2nd dr I spoke of. I am extremely sensitive, I didn’t realise creams mattered, I have thought it and wondered how we find out, I knew lipsitcks can be a problem, but I so agree too with how people are just cashing in on it all and know nothing…..its like when I am out and want a coffee, so I ask is the soy g/f? Sheeesh….the looks I get and I have actually been abused for believing that soy milk can have gluten in it!! No joke there!!!! There is a lovely cafe near me and everything is g/f as they are Coeliac. So I know I am safe there!! I find people have the 2 extreme attitudes….they either believe and are really careful or think I am just plain crazy, as how can a slice of bread make me so sick????? Or think I am nuts as I am concerned about cross-contamination. Thanks everyone for open honesty about a disease that is downright dibilitating, unless followed with a rigid diet and then we have to deal with OP’s (other peoples) negativity and know all attitudes.

  • Liz May 26, 2013 at 6:32 pm

    Oh how I related! My husband figured out he had celiac in 2000, and has been GF since. My family complained about the extra work, that he was being silly for being picky about cross-contamination etc. They’d cook him a piece of meat without sauce or spice, to avoid the gluten, but desserts etc. weren’t accommodated for. Our kids were both diagnosed 3 years ago, and we went completely GF at home, because toddlers don’t understand… And that was ridiculous too. But 2 years ago my niece was diagnosed, and my mom went to help my sister learn to bake GF, and had to do some reading to do this. And suddenly we’re not strict enough. And there are GF treats available. The change in attitude is nice. But it’s frustrating that we weren’t taken seriously in the first place.

    • joyce May 27, 2013 at 2:19 am

      Yes Liz, I do understand where you are coming from, I love my in laws however when it comes to me being gluten free it is a no brainer, just total lack of understanding, 2 years ago hub’s brother was diagnosed and suddenly inlaws were racing out to buy gluten free products, (I had to leave some bisuits at their place so I could have something when I drop in), for when they came for their annual holiday. Then he was told he was “over it” and hub and I had to laugh and told parents what we thought of that one, that it doesn’t just go away, oh how I wish…..My parents are great but siblings……arghhhhh!!! Brother has it, I know, but in full denial, has had bowel Ca, heart problems, diabetes, all the related diseases. he said if I have to take another pill I don’t want to know. I said you will be taking less!!! but nope…..won’t get tested even though he is under anyway for his check ups for the Ca. I truly just don’t understand the negative attitudes…..is it fear do you think that yeah they may have it and hey…Joyce was right all along…..so they have to admit defeat. I would not rub it in but be over the moon they were diagnosed or not, as the case may be so they can treat it accordingly. I would never ever hear the end of the whinging though!!! 😉

  • Cassandra May 26, 2013 at 9:56 pm

    Thank you for sharing this. I think it is important to be reminded of what reality is like from someone else’s point of view. This helps us remember to be patient and compassionate.

    I promise to be patient and accommodating with any celiac friends I may encounter along the way! Raising awareness (like you are doing) will help.
    Hugs and chin up. 🙂

  • Alisa Rhinehart May 27, 2013 at 7:21 am

    Alysa….. Thanks so much for the post!
    I just had the endoscopy on Friday and they took a biopsy to see if I have Celiac.
    I have been eating gluten free for over a year and the difference in how I feel has changed everything for me. (I was diagnosed with IBS at 15…. I am 48 now.)
    I still have had some random issues that have been unexplainable so that is why they have done a series of test to check some things out.
    I am not sure what the test will say, but I do NOT plan on going back to eating gluten even if the test comes back negative….simply because I feel 100% better. I have chose to eat a “more” plant based diet and that has helped make the difference also.
    I can SO relate to some of things you mentioned. Especially the comments on explaining to friends and watching them roll their eyes… Or them thinking I’m on some strange diet to lose weight, etc.
    Thank you again for your post….. It was VERY well said! 🙂

  • Amber May 27, 2013 at 2:19 pm

    I cried when I read this out loud to my husband. I have celiac and I feel just like this! Only a few people really “get” how I feel. All I can say is thank you. I am printing this out for me to keep as a reminder that I am not alone. Thank you.

  • KIM May 27, 2013 at 2:43 pm

    You know it isn’t just people with celiac that have to always worry about what they eat and how it will effect them. There are many other diseases that we treat people just the same and the biggest is diabetes and people think insulin is a cure. It isn’t , it is just a way for me to manage my glucose levels. You would be surprised at all the things that affect my sugars, excitement, a little to much exercise, having work meetings run overtime and you start to have a hypoglycemic attack because you were unable to eat you lunch on time. The differences between Type 1 and 2 can be vast. So know that your disease isn’t the only one out there and you are not the only one with anger at others for their lack of caring and understanding.

  • Margie May 27, 2013 at 3:55 pm

    Wow. I feel that way, and I haven’t been diagnosed with Celiac. Maybe I should get tested, but I know through what I have read that it sometimes produces a negative result even if you do have it. i do wonder what gluten is doing to my insides, when I have it. I try to stay away because I know the results are just like you describe. .. tired, depressed, painful bloating, and other weird symptoms. and just like you, I get irritated that I cannot have the gluten free products because they also make me feel bad. I am still experimenting with other problematic foods as well – rice, eggs, soy, and so on. Sometimes, I think I have a reaction to all food. Its pretty scary

    • yonah July 10, 2014 at 5:49 pm

      I feel the same

  • Stacy Shapiro May 27, 2013 at 8:27 pm

    Stacy Shapiro
    I have tears in my eyes as I read this I have full blown celiac as well and every symptom one could possibly get Ive either had or it’s on my to do list:) I was diagnosed in 2005 after having my uterus removed from continual cysts…im a mom a friend a sister a girlfriend an athlete im the person everyone went to for everything regardless of what I was going through and to the world I had to be ok because “you look great” heard that a lot…anyway from 2005 to 2010 I had six surgeries and just when I thought I was on the road to recovery I quit smoking then had a mental breakdown reality became to much I was off work for six months cfs, hypothyroid, celiac, menapause you name it I had it or was about to have it:) I was offered long term disability and I said oh no get it together and go back to work so I put my request in for return to work in 14 days on day 12 of the countdown I was up all night with horrible abdominal pain (shocking) and shoulder pain..hmmm I googled it, that’s how I’ve diagnosed everything, that along with webmd and a 2am call to my surgeon (yes I have my own surgeon) the call went something like this “omg its my gallbladder and I’m in so much pain” he saw me a few hours later and sure enough it was my gallbladder, he said when do you want to do this (this was tues) I said this week I have to be back to work in 11 days…that was my last surgery in may 2010 I ran my first 5k in november of 2011 i cried and wheezed all the way across the finish line lol and I’m training now for my first 1/2 marathon. Everyday is challenge and if I get glutened by accident it’s hell getting back on track. It’s a lonely existance when the world doesn’t have a clue…my tag is “beyond the image” so far the world can’t see that far beyond…oy the brain fog and memory loss sometimes I wonder which is worse that or the aches and pains or the itching from the DH…thanks for posting life is good:) rock and roll Stl here I come

  • Joni May 27, 2013 at 9:40 pm

    Thank you for this wonderful blog!!!!!!!!!!!!!!!!!
    I’m the mother of a celiac and vice president of the CCA Toronto Chapter for over a decade and this is one of the best from the heart articles/blog I’ve ever read.
    Take care and I hope you don’t mind if I share it will the CCA community!!

  • Crystal May 28, 2013 at 5:32 am

    Thank you for this article. I was diagnosed with Celiac 2 years ago via biopsy, after suffering for many years. I too feel the same as you.

  • Suzanne May 28, 2013 at 6:36 am

    This so described our house in many ways-What did you mean by Celiac eyes?

  • Sheila Hunt May 28, 2013 at 7:49 am

    Thank YOU! I am so glad you posted this. I can relate so much with what you have stated about feeling frustrated with others when you have to go thru the “schpeel” over and over and over. I wish people would educated themselves sometimes. My family is getting much better but please quit offering me a cupcake and then say “oh sorry, you can’t have that can you” or “oh you poor thing”. There is nothing poor about me, I feel amazing since finding out I have issues with gluten (not sure if it’s celiac but doesn’t matter to me, If i eat gluten i feel bad, if i don’t eat gluten my body runs like a top). In fact I have started telling people “Don’t feel sorry for me, I can make a gluten free cupcake that would rock your world, plus now i know why i felt bad for all those years.” Also, for those of you who want to complain to me about how bad you feel but you could never give up bread, well my comment to that is “you just haven’t gotten sick enough yet because there will be a day where even looking at that Olive Garden breadstick will make you break out in hives.”
    Keep sharing you story and delete the negative posts.
    Love and many hugs to you.

  • celiac for 20 years May 28, 2013 at 8:27 am

    I honestly don’t understand the anger in this post. The Disney clip wasn’t “bullying” and the Handler segment was funny. Yes, you have an autoimmune disease (or an intolerance if you’re not a celiac). But I’ve had this for about 20 years, and you can’t let it get you this worked up. Live your life. It’s actually very easy today for anyone with these conditions. Try having this even ten years ago. I used to make all of my own food, and basically couldn’t go out to eat with family and friends. Be grateful that there’s such a large market for it and that people indeed are more aware. Calm down, everyone get off your high horse, accept that this is your life, and be the bigger person. And, please, start seeing the humor in our situations. Because it is absurd, but not tragic.

    • inspiredrd May 28, 2013 at 3:21 pm

      How was that not bullying? Food allergy (and celiac) bullying is a real thing in schools all over the country, and this show was making a joke out of it. People can laugh at me all they want, but bullying kids is not ok.

    • Phil May 28, 2013 at 3:54 pm

      Good to see a response from another long-timer. But I haven’t seen anybody write about another major gluten intolerance – dermatitis herpetiformis (DH). I began suffering from DH back in 1995. The gluten manifested itself as itchy sores on the skin, mostly around joints. There are differing opinions about whether it affects the small intestine as well. I began seeing a noted dermatologist in Minneapolis, but after a year of his ignorance, finally went to see a rheumatologist. The rheumotologist spent an 1 1/2 hours with me, actually listening to me before diagnosing the problem, just from the symptoms. I initally went on medication (Dapsone) for over a year to keep the skin rash in check before finally deciding to go gluten-free. The side affects of the medication became a concern, so GF was the better choice. I’ve never had the “test” because I had enough evidence myself. Since then, my niece, sister and daughter have all been diagnosed.

      I see mostly woman writing here, so if you have brothers or husbands who suffer, get them to respond as well. Other men would probably like to know they are not alone. And one last thing. Somebody mentioned how great Ireland is with gluten intolerance. Italy, of all places, has tested their youth for a couple decdes at least. My wife and I have traveled in Italy twice since I was diagnosed and never had an issue. They understand the issue well.

  • carolyn May 28, 2013 at 10:20 am

    Thanks for your post. I admit that I’ve thought many of those thoughts – and your position has been more than enlightening! Thanks!

  • Jasmine May 28, 2013 at 11:34 am

    This is a great article. I haven’t been diagnosed with celiac yet and know the result can come out negative. The worst part about the gluten free fad is that with people like me who do react badly to gluten but have not been diagnosed, people think I’m pretending to have symptoms just to not be questioned about being gluten free. I’ve also been told that it could be in my head and that my stressing about what I “think” I can’t eat is what is causing my symptoms. Only my husband, close family and friends have seen what happens to me. My worst symptom is my cramps and bloating.My tummy loks like I’m several months pregnant and it hurts to do anything other than lie down. I am eating gluten at the moment for a celiac #bloodtest. Feeling very sick , bloated, itchy and depressed!

    • inspiredrd May 28, 2013 at 3:20 pm

      Oh Jasmine, I am so sorry. I was bloated too before diagnosis. I looked really pregnant, and I remember how uncomfortable that was. Hang in there!

  • Sera May 28, 2013 at 11:53 am

    I am a picky eater, and a health nut, but that’s not a reason for me to get ridiculed about my diet, and it doesn’t change the fact that gluten makes me really really sick…

  • Vicki May 28, 2013 at 2:11 pm

    Thanks for writing this…..I had already stopped gluten hoping it would help with some stomach issues I have been having for years but more serious last spring. When the dr. tested me of course the test came back negative because I had been off gluten for almost 2 months and I will not have any gluten just so I can be sure I have this sensitivity. Basically I diagnosed myself (since all MRI, CT scans, etc. didn’t show anything wrong). I know if I were to eat any type of gluten I would spend at least 2 hours in the bathroom and itt is NOT worth trying even a nibble of something that has gluten in it.

  • Keith May 28, 2013 at 3:53 pm

    Your post really hit home. I was a successful pilot with a large airline when my undiagnosed Celiac had a similar effect on me. I had always lived life the right way, not even a simple parking ticket. When I could not tell anyone what was wrong, I was fired. I lost everything, including the career I had worked so hard for. I’m 39 years old, and now that I’m well, I’m struggling to repair my life and built the happiness and security had before Celiac disease took over. It’s amazing how many people don’t understand this disease.

  • Dallas May 28, 2013 at 6:10 pm

    My son has type 1 diabetes for 7 years, 5 years ago he was finally diagnosed with celiac. I had never heard of it and the Dr at the hospital didn’t seem to care what was making my son sick to begin with and was just treating the diabetic complications from being sick. Luckily his diabetic educator came to see us in the hospital. I explained his symptoms and my frustrations and she advised celiac disease. She advised for mysterious reasons unknown autoimmune diseases like to come in pairs. She had the dr do the tests and his levels were so high they were confident that is what he had. No help explaining what it was or how to shop for it. Thank goodness for the internet. He is 14 now and we have learned what restaurants are helpful and which are not. More and more people are either being diagnosed or being heard so we encounter more sympathetic food service workers. While he will tell you it sucks worse than the diabetes I hope that we as family have helped him enjoy and broaden his food choices.

  • joyce May 28, 2013 at 6:13 pm

    Hi coeliac for 20 years, yes life was tougher years ago, and it is tough for many other illnesses as in diabetes, but honestly, I believe everyone has the right to discuss the negativity associated with OP’s opinions as that is what drags you down, I was unable to have children and unless you are the same and lived my life you would have no idea of the negativity to that arena. I am grateful for what I do have and the food available and with the rising cost of living in Australia, “normal” food is about the same price in most areas. Networks, blogs, support groups are for people to talk about, laugh about, cry about, whinge about what we are facing every day, every minute and for coeliacs every time we open our mouths to food!!! I see no high horses here, just a bunch of people grateful for being able to relate their experiences and that they are not alone. One thing about the coeliac society shows here is that for a few hours I feel ‘normal” as i can taste everything, buy heaps of beautiful food and I know I am not alone, not crazy, as I watch others and have a chat to them about everything!!! I am not judged, and I would say just about everyone I have met that has coeliac has been through what most people have mentioned here. I was diagnosed 7 years ago and I am able to see the improvement in g/f food available since then. Please don’t say we are angry, on high horses and to calm down, as this is what helps us stay calm.

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  • Liza May 28, 2013 at 6:47 pm

    Great article! I totally feel like that pain in the ass when I go out to eat! You could just see the waitress roll her eyes when you start asking questions about the food. I was diagnosed with celiac 3 years ago. My PCP was ordering routine bloodwork, and while I was watching over her shoulder, I saw celiac panel. I told her to test me for that too. She did, no questions asked. I had never gone to her for any of my symptoms, which consisted of ridiculous gas, bloating and constant diarrhea. So I guess she was humoring me. WELL when the test came back, she called me and said my numbers were the highest she’d ever seen! I guess I was lucky in that respect that I had a definite positive blood test. My sister, on the other hand WON’T get tested because her DR. says, “Oh no, you don’t have Celiac”. She’s had chronic reflux, heartburn, belching, and constipation almost her whole adult life. It’s so frustrating that she won’t listen to me.

  • Lindsey Stewart May 28, 2013 at 6:59 pm

    Thanks for posting Alysa. My son (4-year-old) was tested for Celiac Disease 2 years ago, which yielded inconclusive results since he doesn’t produce IgA (the serum that they test). Then, tested positive for the genetic testing, but the doctor still didn’t think we should pursue gluten-free. Pretty much just shrugged his shoulders. Now, 2 years later with the same problems, I’m realizing that not all doctors are created equal. I understand your frustration!
    We went gluten free for 6 weeks with good results, but when we reintroduced gluten, he was still fine, and then slowly over the course of months showed symptoms again. At what age would you let your children have an endoscopy? Or would you at all?

    • inspiredrd May 28, 2013 at 7:15 pm

      Hey friend! As far as I know, the endoscopy is recommended (as long as he has been eating gluten). I asked the Celiac Disease Center for their recommendation and will let you know when they answer.

    • Melissa May 28, 2013 at 7:23 pm

      Hi Lindsey. My daughter had severe symptoms beginning at 8 months old and progressing in severity to the point she was vomiting daily and too weak to walk at 16 months. Her blood tests were negative, so her pediatric GI (the one whose supposed to be a specialist at this!) made up something about not relaxing her sphincter and that she would grow out of it. We switched specialists, she had her endoscopy at 20 months and was found to have severe celiac disease.

      Turns out my mom, who suffered for 30 years and was told it was ‘anxiety’ or ‘irritable bowel’ is now gluten free and symptom free.

    • inspiredrd June 7, 2013 at 11:43 am

      From the Celiac Disease Center —- Endoscopy may be needed if his ped GI considers this procedure necessary to understand why he has symptoms. Otherwise, if the question is to rule out #celiacdisease, then a negative serology is all that is needed.

  • JC May 28, 2013 at 7:17 pm

    Thank you! What a good dialog you have going here! I feel so much better just reading these responses! I too just had an experience tonight where two of my family members rolled their eyes at me! Seriously, I get it, I’m a pain in the ass to take out to a restaurant! I’m a pain in the ass to take to any gathering…because all gatherings have food! My biggest complaint is (and I know it’s totally my problem) the amount of gluten-ful options at parties and maybe one or two gluten free options! I have a real difficultly only being able to have one or two things out of an entire smorgasbord of food. And then the host is like I have a gluten free crackers for you but there are like 16 other gluten-ful options! I’m trying really hard to just be grateful for the one or two options.

  • jessica rushton May 28, 2013 at 7:39 pm

    I was diagnosed last Sep. After I had my son almost four years ago I started having bad stomach pain and tired all the time. I went to the doctor and he did the blood test which came back negative. So I was relieved but then after I had my daughter last year it had been getting worse and I couldn’t live with the pain anymore. So I went back to a different doc did the blood test came back negative again. So I was happy again but the only way they found out I had celiac was to do the biopsy. The scope was not as bad as I thought it would b. That’s the only way they found out that I did have celiacs. I would recommend the scope to anyone who thinks they have it. They put you to sleep so u dont know what’s going on. I can tell a difference if I eat gluten im very crabby and exhausted all the time. I feel bad I get snappy with my family.

  • Rachel May 28, 2013 at 8:15 pm

    very well said. I have Celiac Disease, too, and it is no joke or laughing matter. I was quite sick for many years until I finally got diagnosed. I get so sick of the gluten-free diet being something “hip” and “trendy.” It’s very irresponsible for restaurants and other places to have gluten-free items if they truly don’t understand the diet and the complications in food preparation. It does seem like they’re just trying to make some fast bucks. Thanks for writing this.

  • Jessica Valdivia May 28, 2013 at 8:30 pm

    I thought this post was awesome!!! Much of your symptoms are the same as mine. People usually assume I must have had a lot of stomach issues. Well…..No not really! You’ve put into words everything I have ever wanted to say to so many (I hate to say ignorant) people.

  • Mary C May 28, 2013 at 8:57 pm

    I also have Celiacs and I can relate to everything you wrote! My mother was told she was allergic to wheat, rye & barley. I do not ever remember her going on a gluten free diet. She suffered withs many ailments, allergies & “sick headaches.” She was diagnosed with colon cancer at 55 and died 5 yrs later. My grandmother also had several of the same issues and had several surgeries to remove sections of her colon. I was also sick with the same allergies & asthma, aching joints and migraines. Because of acid reflux I had an endoscopy and found severe damage to the villi in my small intestines. Since going GF I am very healthy. I do have hypo thyroid (from undiagnosed Celiacs) but I feel very healthy and I encourage all to take control of their health. I try to eat whole foods (fresh fruits & veggies and meats) very little processed food AND no GMO foods. Since almost all wheat is genetically modified, no one should eat it! I am so thankful that this has lead me to eat healthy and I have become my own advocate. Yes, I do feel like people are rolling their eyes, but I will end up much healthier than them. I always offer to bring desserts and GF dishes and I bring my GF Snyders pretzels and whole grain crackers, Crunch Master with sea salt, with me. After about 5yrs, I have become a very good GF dessert maker and cook. 🙂

  • katherine anderson May 28, 2013 at 10:48 pm

    I’ve lived with celiac disease since my diagnosis in 1991. When I was first diagnosed it was tragic for me socially and financially. There were NO gf products on the market. You certainly didn’t find a restaurant that would cater to your diet in any way.
    While many complain about the “fad” of people trying a gf diet when they aren’t burdened with celiac disease, I personally am thankful. Thanks to the “fad” there is now a plethora of gf foods and restaurant menus. I no longer live a life where I am socially excluded from food and when I say I can’t have gluten no one bats an eye. They just go “ooooh”, cuz they know all about it.
    I am a little confused about why you say you have to think about celiac when you use lotion. Unless your eating your lotion it isn’t an issue. That is one thing that annoys me. Shampoo that says its gluten free. Really? That’s a gimmick.

    • cosmo k June 4, 2013 at 9:12 am

      Thank you! I thought the same thing when reading this.
      I’ve been a celiac since ’96 after doctors had nearly given up on finding out what was wrong with me. I had many of the issues the OP lists, and then some. (I was jointly diagnosed with celiac and graves’, so it’s fun)

      Options and knowledge surrounding gluten is so much better now. I’m incredibly grateful for the growing “fad” of gluten free “dieting”
      And you’re correct about the beauty products. The only ones that I can see being an issue are mouthwashes, toothpastes, or lip sticks/balms/glosses/etc. Even if you have dermatitis herpetiformis as Phil mentioned above, the only way it manifests itself is when gluten is consumed.
      I hate when I see random beauty products with “gluten free” on the side. I was dyeing my sister’s hair once and the hair dye was labelled as gluten free. Oh really? Gee, thanks! Well now I can eat it safely.

    • GF or Die January 10, 2016 at 3:21 pm

      Unfortunately, there are those of us who are sensitive even to what is absorbed through our skin. When I began to taste the balm I was using to combat itchiness, even after washing my hands thoroughly after each application, I realized what was making me continue to feel bad even after eliminating all the offenders from my diet. Once I removed them from my daily hygiene and grooming regimen, I had no more issues. Thankfully, these products are available for sufferers like me. Don’t be so quick to judge just because it hasn’t happened to you.

  • Diana May 28, 2013 at 11:11 pm

    I wish they knew its not an allergy and the pain I go through is so bad that there are no words. I wish they knew that saying things like I wish I had your disease so I could be skinny makes me want to scream. Would you want cancer? I wish they knew how it gave me other problems like chronic pancreatitis and damaged my kidneys. I wish they knew that every single day I have to be on high alert because one lapse in judgement or careless mistake can put me out of commission for weeks at a time if not more. I wish they knew how scared I am of what I don’t know about this disease and how I wonder if the fact that my body went to war with itself and the damage I know and don’t know about will one day be what kills me.

  • Terry J. Stroud May 29, 2013 at 9:48 am

    I can totally relate! Although I’m not celiac, I have a dairy (caseine & whey) sensitivity that triggers stomach pain, anxiety, depression, mood swings, and a whole plethora of other issues that wrack my body and make me useless for at least 3 days for the major parts, and then my body isn’t back in gear for a good 2 weeks.

    Of course, everyone assumes it’s “lactose intolerance” and I’m met with: “Well, there’s only 1 tsp of butter in it.” Yeah. Because you’d tell someone with a nut allergy “there’s only one nut in it!”

    I’m sure you get that same thing with gluten. “Well, I only used the same knife to cut bread.” — Thanks. ‘Cause cross-contamination isn’t something that food safety has been harping on for years upon years. *Sigh*

    Anyway, sorry for the long rant. I just totally can relate in a lot of ways and feel your pain. I’m actually going Paleo to try to see if that fixes anything (especially my IBS and fatigue issues). In the meantime, I may actually get tested for celiac under the suggestion of a friend of mine.

    Food is a powerful thing. Stay strong! One day, people will get it!

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  • Brittany Shaw May 31, 2013 at 3:23 pm

    Thank you for putting in to words what I could not, no one has explained it better and no dietician who read about Celiac Disease in a book can begin to realize what it is like to LIVE with it, not as a personal choice, not as a way to be healthier.. but because there is NO other option. I will be showing this article to my family. When you explained the icy fingers messing with your brain, its like you took the words from my mouth. This is a symptom I have often tried to explain but could never really get my point across. Yes, people …..its not stomach cancer so we should be “happy” right? YES I am glad it is not cancer, but living with it isn’t easy and we deserve some sympathy too! heaven forbid undiagnosed CD turns into Cancer, then people might care. Thank You, Thank You for your article and not being afraid to be honest and shed some light on the subject. Kudos!

  • Laura Moore June 1, 2013 at 7:17 pm

    To me being gluten free means eating a healthier diet with out all the additives in regular food. I bake all my own breads, buns and desserts and also most meals from scratch. I also have to follow a diabetic diet along with gluten free because I also have type 1 diabetes. Try that for a week, it will make you wish for a cure fast!

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  • Peggy June 6, 2013 at 9:49 pm

    Thank you for the great article! I was diagnosed with mixed connective tissue disease leaning towards lupus by a rheumatologist. then a separate diagnosis of Hoshimotos thyroiditis, IBS, fibromyalgia from another doctor.ihave a daughter who has psoriasis and eczema and when I found an article linking gluten intolerance I started reading everything I could find. I’ve gotten a blood panel but it’s taking forever for the results. anyway, we’ve gone gluten free and within the days the brain fog started lifting and my stomach began flattening! I’m feeling better the longer I go without it! for those of you who say nothing to eat at a party… I always bring something to share, that way there’s something safe I can eat. I was told you have lupus…. there’s nothing you can do and now there’s something I can do. I don’t care if that blood test is negative, I feel better! thanks again!
    gluten free

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  • Sarah June 8, 2013 at 7:07 pm

    I have a close friend who has celiac disease. It was sorta weird when we first met, but it’s who she is. There were things that I never realized before we were friends… Like some birth control pills (most, actually) have gluten in them. CRAZY! Whenever we hang out, I try to make sure we go somewhere that has good options for her or I make things I know are gluten-free. When I was pregnant, I had gestational diabetes. While I didn’t have to avoid gluten, avoiding carbs (mainly bread) was incredibly difficult for me. I suddenly found a new appreciation for my friend and her ability to make good out of a crappy situation. Now that I see all these gluten-free-because-it’s-trendy people, it frustrates me to no end. For her, for you, and for everyone else who doesn’t have a choice in the matter.

  • K June 12, 2013 at 2:20 am

    Perfectly said!

  • Stacey June 12, 2013 at 11:14 am

    I wasn’t ever tested…
    Thankfully with the Lord’s help, I have been able to discern it is Celiac though. That really helps… The symptoms are noticeable if I even *touch* gluten. Fructose Malabsorption: another sign. Rash on hands. Itching. This is just touching it. The amount of tummy issues I’d have waiting for me if I went anywhere near the actual eating of it… Rough time of trying to go gluten free, be okay about it, and not break down when family is shopping at a normal/local grocery store where my options are pretty limited.. Then, there is the wash hands like crazy and try to avoid cross contamination thing…. Never ending thought process of hoping no gluten has hidden its way into my path..

  • Sharyn June 15, 2013 at 2:59 pm

    Good article, however there is more to it. One may not have coeliac disease but still have gluten intolerance. Different to his siblings who are serious coeliacs, (his younger brother was born with it!), my husband is gluten intolerant. Coeliac disease is the manifestation of gluten intolerance. The villi in my husbands gut are still healthy, but when he eats gluten he scours, constant headaches, blocked nasal passages, mouth ulcers, irregular heartbeat, tingling & numbness in his arms & hands, joint pains, …….a whole list of strange symptoms that take from a week to 4 months to disappear after he ingests any gluten. There is no absolutely 100% test to prove coeliac one way or the other – even a biopsy can be taken from an area where the villi are not yet affected. He had a DNA test which came back ok but it said it is no guarantee if you are of Northern European decent ! – and aren’t most of us?! The only way is to go 100% gluten free for at least 5-6 months to see if your symptoms disappear……& it is no good doing it half heartedly, it must be 100%. It is better to go gluten free than to continue causing your body irreparable damage – serious joint damage, destruction of thyroid, frontal brain lobe atrophy, heart problems etc. gluten free cooking is easy (bread, biscuits & cakes aren’t real nice) but going out and dinner invitations can be difficult & embarrassing. Gluten free food has changed my husbands life.

  • Sharyn June 15, 2013 at 3:01 pm

    Beware, most tablet dorm medication contains Gluten! Be sure to have your Dr research a gluten free substitute.

  • Lori June 17, 2013 at 6:31 am

    I am sick of my parents and brother and sister never taken it seriously. I almost always get sick when i eat anything at their houses. I visited for fathers day and am sick. My mom put real butter in the brownies and then tried to lie about it. I am gluten and dairy intolerant. I also got glutened at a restaurant. I got sores in my mouth and butt. I have brain fog fatigue bloating reflux contipation- pooping rocks I get over emotional cant sleep. My family thinks i am crazy. Before changing my diet I had high blood pressure swelling chonic infection and allergic reactions. I was on steroids a lot ans antibiotics alot.

  • Brianna June 25, 2013 at 5:50 pm

    This is fantastic! People really don’t understand how it feels or how serious it can get. The thing I hate most is when people (especially my own family!) refer to their gluten-y food as “normal” food as if mine is some sort of alien species of food developed just for weirdos like me, this is my new normal and it feels like a huge put down when someone carelessly says something. I had headaches every. single. day. for 5 years, not to mention the constant stomach pains and diarrhea, and multiple other symptoms I now am certain were caused by this disease. I was tested at 5 years old and the doctors told my parents (after my positive blood test) – “She doesn’t look like she has celiac disease.” – They then would not conduct any further testing. Only to find out at age 15 I most certainly had celiac disease! I’m just glad see something that so perfectly describes my life (Still – 6 years after my diagnosis)! Thank you!!

  • Becky July 1, 2013 at 11:06 pm

    By the time my daughter was 16 she had experienced severe abdominal pain, colon pain, severe and chronic constipation, anal fissures with bleeding fromt he rectum, violent vomiting, fogginess, intestinal spasms, everything she ate “hurt”, sometimes the pain was so bad she would pass out, or black out. None of these episodes could be traced to any specific food or exposure despite food and poo diaries . We had blood tests, sygmoidoscopies (sp?), colonoscopies (sp?), radio-active digestive tests (showed delayed digestion), and countless exams and specialist. We found the class 3 peanut and class 2 milk allergy first. All celiac spru (sp?) came back negative after several biopsies, however they did find nodular hyperplasia (sp?) which is what led us to do the blood allergy testing in the first place, despite the doctor’s reluctance and my insistance (pediatric gastroenterologist in Boise). Eliminating the milk and peanut exposure helped some, but she still experienced these horrible episodes although not nearly as frequent and we were still unable to pin it on any specific exposure. At 5’5” she was 120 and dropped 15 pounds her sophomore year of high school; we had to buy all new clothes for her by March because nothing would fit even with a belt. At that point she had been diagnosed irritable bowel syndrome, systemic abdominal pain (“a tummy ache” as explained by the pediatric gastro guy in Boise), ulcerative colitis, micro-ulcerative colitis, Crohns disease and oh let’s not forget “oh now come on it’s not really that bad.” This is a kid that was missing 2-3 days of school each week because of these episodes and still graduated high school at 17 years old in 3 years instead of 4 with 45 college credits and a full academic ride to the University of Oregon. This is not a kid wanting to skip school.
    As I traveled around the country with my husband for his work quite frequently it was odd that as I chatted with different people (strangers, yes I am a friendly talker), I seemed to run into so many individuals with Celiac’s all of which emphatically told me the same thing: “Get her off gluten! Her story is identical to mine. Her tests will continue to come back negative for Celiacs until later in the disease.” Now I don’t claim that this is true, it is just what many people have told me. So take that for what it is worth. My daughter moved home for the summer last June and I convinced her we needed to try it. I had tried going gluten free for my own health reasons about 6 months prior, so I was familiar with it but not very knowledgeable at that point. By the way, going gluten free for me made no difference what so ever, just for the record. HOWEVER, my daughter went gluten free for a month and a half which I have to say she was completely episode free month and a half until she decided her mother was a hypochondriac and a she par took of some pretzels with her friends camping. Within 10 minutes she was in horrific pain in her abdomen that quickly turned to violent vomiting, abdominal knowing pain and a foggy haze for days. She tested this theory once more, during that last year although not exactly meant as a “theory test” more of “I am 19, and can ignore this away” but unfortunately again she experienced the same reaction.
    So here is my question: Is it common for celiac spru to come back negative in biopsies and later have it come back positive?
    All of her doctors and specialists are reluctant to diagnose her with Celiac’s and are calling it sensitivity or intolerance. I’m not very versed in any of these, I just know when she eats it we are going to have a BIG problem. Both her peanut and milk allergy are not anaphylactic but delayed food allergies and cause abdominal pain also, just not to the extreme that gluten does.
    Anyone out there has any thoughts or if you can enlighten or educate me further I would greatly appreciate it. I have done extensive searched on the internet, but as you know the list for Celiac’s symptoms is a mile long.
    My email is [email protected]
    Thanks for the ear!

  • Luisa July 4, 2013 at 9:27 am

    Me ha gustado mucho el artículo, yo tengo una hija de 18 años celiaca que fue diagnosticada cuando tenia 14 meses de edad, yo vivo en España y desde hace unos 5 años hay mas opciones para las personas con enfermedad celiaca ya sean intolerantes o alérgicas, ya que como bien expone el artículo se ha puesto de moda, hay productos prácticamente en todos los supermercados, pero hace un tiempo cuando mi hija era pequeña no había nada, la comida para la niña me la tenían que pedir a Alemania y tardaba una semana en llegar así que tenía que prever siempre que no se quedase sin cosas básicas como galletas, macarrones, sopa o pan, en ciudades pequeñas ni siquiera había ese tipo de productos, yo tuve que aprender a hacer la mayoría de productos que ella consumía en casa, porque no había donde comprarlos, cuando yo contaba lo que la pasaba todo el mundo pensaba que era una moda que no quería darle a mi hija una serie de productos, ha ella la diagnosticaron después de muchas horas pasadas en el hospital, la testarudez de su madre y una fuerte carencia nutricional, podría haberse muerto sino es por mi insistencia a que le hiciesen pruebas, por suerte hoy es una joven de 18 años sana y feliz.

    Edit: Translated from Google Translate
    “I really liked the article, I have a 18 year old daughter was diagnosed with celiac when I was 14 months old, I live in Spain and for about five years there are more options for people with celiac disease and are intolerant or allergic since as it exposes the article has become fashionable, there are products in virtually every supermarket, but some time ago when my daughter was young there was nothing, the food for the girl had to ask me to Germany and took a week to arrive so I had to provide long as no one was left with basic things like biscuits, macaroni, soup or bread, in small towns even had that kind of product, I had to learn to do the majority of products consumed at home she because there was no where to buy, when I had passed what everyone thought it was a fad that would not give my daughter a number of products, has she diagnosed after many hours spent in the hospital, the stubbornness of his mother and a strong nutritional deficiency could have died if not for my insistence that they should make tests, luckily today is a 18 year old healthy and happy.”

  • Yanina July 9, 2013 at 11:29 am

    great information. I have an appt this month for blood work and will ask to get tested. Ive had stomach issues for years now and drs just keep giving me random medication. I started a low carb diet and with that I noticed my stomach aches weren’t as bad and with certain foods(sauces, sushi -I didn’t know crab meat had gluten) they were. with that I cut out gluten and now I def notice when I eat it I instantly suffer.

  • Kim Pebley Q & A | Food Allergy Bloggers Conference 2013 in Las Vegas, Nevada, November 2-4 July 22, 2013 at 4:05 pm

    […] 9. What is one of your favorite posts written by another blogger and why? One of the best blog posts I’ve ever read came from Alysa at www.inspiredrd.com.  At a time she published this post, much was going awry during Celiac Awareness Month.  Those with celiac disease and NCGS were being called things like “glutards” by people who have no concept of what we deal with on a daily basis.  We were all growing weary and I was quite saddened by the level of food bullying that exists among adults.  If you know me, you know that I am not a crier but this post made me ball like a baby. https://inspiredrd.com/2013/05/what-i-want-you-to-know-celiac-disease.html […]

  • Jimmy Lee September 5, 2013 at 12:55 am

    Great article and post. Being a severe Celiac, I appreciate how well you articulated how I feel every single day. For me, food is either poison or medicine. Any hint of gluten turns my meal into poison that kills.

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  • Kristie September 29, 2013 at 3:31 pm

    That perfectly describes how I feel. I love it when I question my friends about some food item and they say “oh, Im sure it won’t hurt you”, then I spend the next two hours in the bathroom and the next two days in bed.

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  • S December 4, 2013 at 10:15 am

    Do you have any links that could help those of us that want to make GF foods or buy GF foods for others? (I’m in CAN but anything is helpful)

    • InspiredRD December 4, 2013 at 12:47 pm

      This is a helpful resource – http://celiacdisease.about.com/od/socializingwithoutgluten/a/GuestPrep.htm

    • jessica April 22, 2015 at 9:27 pm

      My sister in law owns a business called Gluten Free Goodies by Brown and her and her family except her lucky husband lol have all kinds of food allergies, gluten is just one. But check out her treats they are the most delicious treats I have ever had. I don’t have gluten allergy but I love to eat Gluten free when I can just because I hear how awful it can be for your body. Anyway the food ships directly to you and is freshly made every day by HER personally! It’s awesome GLUTEN FREE GOODIES BY BROWN! Check it out!

  • Guest January 7, 2014 at 3:44 pm

    Yes! This is perfect. The icy fingers is a great description, I got ‘glutened’ a few days ago and I was trying to describe that feeling. For me, I am usually out 1.5-2 weeks as well!
    I am not glad you feel this, but relieved to know someone out there gets it.
    I am not trying to be trendy I am trying to be healthy and well. I do not enjoy being difficult at every meal I do not prepare or while grocery shopping, or ordering a drink at a bar.
    I do not eat processed foods bc they mostly give me the same symptoms, not because I am a health nut.

    • GH420 April 21, 2015 at 3:38 am

      I found that most processed foods hurt me as well because I am sensitive to the gluten in corn as well as wheat barley and rye. It could be the corn with you as well.

  • Whitney Brundage January 7, 2014 at 3:55 pm

    Yes! This is perfect. The icy fingers is a great description, I got ‘glutened’ a few days ago and I was trying to describe that feeling. For me, I am usually out 1.5-2 weeks as well!

    I am not glad you feel this, but relieved to know someone out there gets it.

    I am not trying to be trendy I am trying to be healthy and well. I do not enjoy being difficult at every meal I do not prepare or while grocery shopping, or ordering a drink at a bar.

    I do not eat processed foods bc they mostly give me the same symptoms, not because I am a health nut.

    I posted this on the blog too, I have no idea if they are linked.

    • GH420 April 21, 2015 at 3:40 am

      30-50% of celiacs are also sensitive to the gluten in corn. I’m one, you may be one too.

  • Live Life Celiac January 7, 2014 at 8:38 pm

    This was so perfectly said, I had to post a reprint/link to our blog at livelifeceliac.wordpress.com. So many people need to know they are sick for a reason and that they aren’t alone. Your post was spot on.

  • Lisa January 12, 2014 at 11:42 am

    This was perfectly put. I am also in the healthcare profession and I must say that it almost makes things harder instead of easier. It’s amazing how much the medical profession doesn’t know, or more accurately doesn’t seem to care. Celiac and gluten sensitivity (which are just variations of basically the same thing) present in so many different ways and produce many different symptoms. It truly is a multi system disease spectrum which combines several specialties in medicine but the problem with medicine is that the specialties are so narrowly focused they miss the big picture. The gut is one of the keys to autoimmune disorders because of its role in immunity and this autoimmune problem can effect almost every organ from skin, brain, neural, GI, endocrine, psych, etc. It’s like as long as they can rule out “life threatening” conditions then the other symptoms can be explained by some sort of “syndrome” or “idiopathic” (meaning unknown cause ) condition. These are not real diagnoses by the way. Idiopathic means your doctor is an idiot and doesn’t understand the pathology of your condition. Do not accept that diagnosis. And the stomach issues, anxiety, insomnia, personality changes, depression, aches, pains, brain fog, dizziness, heart palpitations, fatigue, rash, mouth sores, neuropathy, etc. well that’s just stress right? Here’s some Xanax and Prozac, lyrica.

    • JohnnyComeLately June 11, 2014 at 10:04 am

      Say it again sister! I had to see a total of 6 doctors before I found one who even KNEW and had SEEN patients that have Dermatitis Herpetiformis/DH or Celiac. THEN we find the tests are unreliable, blood test, skin biopsy. There is absolutely no rash after a couple of months of being completely gluten free but let one iota of gluten touch my lips and it comes back. I was told to go back on gluten to take the tests which is why some people avoid taking the tests

      Oh, and let’s not forget that gluten is also in many lip balms, toothpastes, lipsticks, etc. so I have learned that the hard way and spend lots of time reading ingredients and studying because I am motivated to keep from having this horrible rash that hurts, itches and looks disgusting all at once.

      It is terribly frustrating that I know more than the Dr’s I have gone to and some of them (only because there was no 3rd party with us) acted as if I was beneath them. They truly acted as if I could not possibly know what I am talking about, one witch insisted I was allergic to fragrances in just 4 minutes and began to cut me off repeatedly when I presented solid evidence to the contrary, including the fact that I went off gluten for 2 MONTHS and had no rash.

    • Sarah April 21, 2015 at 6:00 am

      Yes! Yes! Yes!!!

      My husband had a number of problems, and eventually, things progressed to the point where he was throwing up every few weeks. Of course, he was labeled as having “cyclic vomiting syndrome,” which really means nothing at all. He was finally diagnosed as having Celiac Disease (I insisted that he get a biopsy despite the fact that he had a negative blood test several times over the years). His biopsy was negative while eating gluten free, and positive while eating gluten. But his vomiting never let up. It just continued to get worse.

      We found out about SIBO through our Naturopathic Doctor, and ordered a lactulose breath test from him since Nova Scotia doesn’t offer hydrogen breath tests. In fact, SIBO is completely unheard of here. My husband had to stop taking his PPI before the test, and nobody warned him about PPI rebound. Well… the test was inconclusive, and ever since the PPI rebound, he started vomiting nearly every day. The herbal stuff our Naturopath was giving him for SIBO (Paracide) wasn’t working, and the GAPS diet wasn’t working either. Over the years, we kept losing family doctors (big problem in NS), so we got a new one, and he not only tried to tell my husband that he doesn’t have Celiac Disease (the doctor ordered another anti-ttg-iga even though we told him that my husband is on a gluten free diet… so of course it was negative! And it’s always been negative!), but he also told my husband to go back on Rabeprazole!!! PPI’s, as well as Celiac Disease, can cause SIBO! And we tried to explain to the doctor that PPI’s never stopped the vomiting anyway.

      So finally we found another family doctor, and for the first time, she actually took my stacks of paper that I brought in regarding SIBO, Celiac, etc. She said she would go home and read them over the Christmas break. Well, after the break (and lots more puking), she prescribed Rifaximin (called Zaxine in Canada). 550mg 3x a day for 14 days. Lo and behold, my husband’s puking STOPPED! He hasn’t thrown up since his treatment in January, and his acid reflux is gone… even his asthma disappeared! And he had that since childhood!!!

      Oh, and it turns out our new family doctor has Celiac Disease, and it took her 10 years to get diagnosed. It explains the empathy and open mindedness.

      It amazes me all the trouble that a screwy gut can cause!!!

  • Meagan January 20, 2014 at 9:10 am

    Less than a week ago, I was diagnosed with Celiac Disease after an attack lasting 6 months, or so. I am 26, a newlywed, and desperately trying not to be intimidated by everything I read about this disease. Today was a really bad day. I gave in and started to feel a little hopeless.. That is, until I came across your article. I cannot thank you enough for your bravery and vulnerability. It has given me strength today. Thank you again for sharing your story.

    • InspiredRD January 23, 2014 at 8:24 am

      Meagan, that makes me so happy to read, thank you for taking the time to comment. This journey is long and difficult at times, but it does get better. Let me know if you need anything!

  • Marleen January 28, 2014 at 7:32 am

    I want to thank you for this post. I
    read your story on the Dutch celiac platform, someone posted a link with a
    translation. I have been feeling down on and off for the last year. I have
    been diagnosed when I was only 10 months old (I am 22 now) and back then, there
    were no special gluten free foods in the store. My mom always bought flour once
    or twice a year on a gluten free food fair and made everything herself. I am
    incredible grateful for that. So I have had it easy. I know people who have
    been sick for over ten years before they figured out it was celiac. I know I am
    not really allowed to complain, because there are always people who don’t have
    such luck. That doesn’t mean that I am not really angry form time to time. I am
    in university now and I do want to eat out, or eat at friends but sometimes I
    prefer not to, because I’ll get glutened. I really appreciate that you posted
    the story and made me see that sometimes, you can be a little bit angry because
    it is not easy. That I am allowed to complain form time to time. Thank you.

  • Kerry February 7, 2014 at 3:14 pm

    This is perfect! I am so frustrated and sad, it is so lonely when you have been glutened and No one understands. You get it, along with every other person diagnosed with Celiac Disease. Wow! I needed that today. Thank you!

    • InspiredRD February 10, 2014 at 10:01 am

      Kerry, I’m so glad my words could help you. Sometimes we just need permission to be mad 🙂

  • Amanda February 18, 2014 at 2:42 pm

    You took the words right out of my mouth. I’m glad I found this as it meant that I was not alone. In the eyes of others being a celiac is “easy” as you only have to eat “gluten free”…. But eating gluten free is not a choice I made it was made for me. It’s not a fad diet or an intolerance where I can “just have a little bit”… It’s life long and rules your life. Hopefully with more articles like this and sharing them on social media it will open the eyes of others. Thanks again for taking the time to write this 🙂

  • Shannon February 21, 2014 at 4:57 pm

    Thank you for articulating how I feel. I don’t spend time in the bathroom, instead I feel unsafe to drive, take care of patients, carry on a conversation or even read or watch tv. In a weird way it is reassuring to know that I am not alone with my strange neurological reactions.

  • Roxanne February 27, 2014 at 3:05 pm

    I agree with everything you said, there are days I feel like I am going to lose my mind. I feel better than bam, where did it come from, why am I sick again. So many questions , not enough answers. I also have the DH rash which is horrible . I’m having biopsy’s done next week. You can’t eat anything without putting it under a microscope. Thank you for sharing your feelings. It is nice to hear other people feel the same.

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  • Wilda Beavers March 9, 2014 at 6:55 pm

    The above was posted by my daughter. I’m angry that it had to happen to her. Life is not easy for any of us; but she is a hard-working Mom of 4, runs hither & yon for her kids and husband. I’m sick with other things ~ God could have bestowed this crap on me instead her. People, for heavens sake tune in ~ Celiac’s isn’t “just” the trendy disease of the Spring – it can be DEADLY. I don’t want it to be my daughter . WAKE UP, READ LABELS, LISTEN ~ anything you can do to prevent one person’s miserable encounter with ANY form of gluten. This is tragically real.

  • Cassie March 10, 2014 at 8:36 pm

    I am so thankful that you posted this. I feel so sick of people just not understanding. I love how you comment on your symptoms of mood swings. I have shared this with my family, just to help explain why it is better for me to be alone after eating gluten-they’ve never fully understood.

    I am not involved in a support group for Celiac patients, because I always believed that this wasn’t a “big deal” and that I just needed to handle changing my diet. After reading this, I think I might change that!

    • InspiredRD March 12, 2014 at 10:41 am

      Thanks Cassie. The mood swings were the hardest thing for me to figure out (and are the hardest on my family). Glad my story could help.

  • Lorna March 11, 2014 at 2:12 am

    This resonates so much i almost cried. I spent years trying for a child, then found out I had celiac disease. I was lucky – I stopped eating gluten and now have a little girl. But my mother, who is a retired nurse, still thinks it’s a fad – last week she made me mushroom stroganoff, and luckily i checked the stock cube ingredients. In big, bold letters: CONTAINS GLUTEN. When I mentioned it, she said ‘oh, it’s only a little bit, don’t fuss’. Like you, the anxiety, low mood etc. is just as bad as the physical stomach pain, yet I feel as if I have to apologise constantly for being a nuisance. I rarely eat out now, and only one of my friends will cook for me. The rest don’t understand and think it’s a food fad. Thanks for highlighting this, sometimes it’s good to know I’m not alone!

    • InspiredRD March 12, 2014 at 10:40 am

      I am so sorry your friends and family aren’t more supportive. That drives me nuts! You are not alone. Not at all.

    • Terry, 44 Ak January 27, 2015 at 4:10 pm

      I just was forwarded this. Unfortunately, it is very well done. Why unfortunately? Because it stinks. It just stinks. I have been GF for almost nine years now. Yes there are a lot of options for food, but the price and the ingredients are out of control. To make it ‘taste’ better sodium or fat is high. We have no choice, so they charge whatever they want. I was raised on home made bread, muffins, biscuits, cookies….now I HATE eating. I really do. I don’t crave anything. I don’t want anything. I know it drives my wife nuts. But there it is.

      Also, when someone’s says ‘I don’t think it has gluten’ or ‘I think you can have it’, don’t bother putting it on my plate. I won’t eat it. Save it or throw it away. Please.
      Terry, 44

  • AAK March 18, 2014 at 10:08 am

    Yep, that sums it up. I struggled with health problems for years and finally after being diagnosed through blood tests, I went gluten free. I am a new person. Getting glutened is the worse feeling… my husband can tell a difference in me as fast as I can feel the cascade of symptoms begin. I get extreme fatigue, ataxia, eyes can not focus and they quiver, leg pain, nausea / upset stomach, and anger first, then depressed. I am sorry that yours last so long. Mine last 12-36 hours after minute amounts of any cross contamination, and it is still miserable.

  • Karen March 25, 2014 at 8:36 am

    I’m sorry you experience this. Me too :(. I’m still in the recovery stage from being very ill and since it went on so long, it’s going to take some time. The worst of my symptoms are 10-14 days but the effects go on for a month. My dad told me years ago (when I’d get the “episodes”) that the only way he could tell I was sick is that he could see it in my eyes; that the corners turned down. He’s the only one who saw that. I’ve been on the road for 15 months now and looking for more relief. Good luck to you!

  • Jillian March 25, 2014 at 8:39 am

    When I was diagnosed with celiac in Oct 2013, I started a blog hoping it would be an outlet for my experience. When I write, I make it a point to focus on the positive. It is so difficult to not rant and rave every time we are glutened or have experiences that are beyond frustrating. Overall, the blog does help me stay positive and I appreciate that. However, I am so happy you had the courage to post the truth. These symptoms you listed are real and I’m so grateful I’m not alone in this. When I am glutened there are so many ways my body reacts. The hardest for me… and my husband I’m sure…to understand are the mood swings, irrational thoughts, anxiety, fatigue, and depression. How can you explain and apologize for not being yourself. To the outsider, you should be able to control your mood and for the celiac that doesn’t know how or where it is coming from it is very confusing. For most of my life I though I was crazy. I stopped eating gluten and I’m not only a different person, but I am skipping through life. So I thank you for making me realize that it is not just me… but my reaction to gluten invading my body and taking over my life.

  • Jcar April 5, 2014 at 12:18 pm

    The worst part for me is having my family ask me ” well, where can YOU eat?” I get that they are trying to include me and my new way of living but it makes me feel like an outcast.

    • InspiredRD April 7, 2014 at 1:28 pm

      Yes that’s hard. Sometimes you just don’t want to have to be the center of the attention. Especially when it’s phrased that way.

  • Monica April 11, 2014 at 10:25 am

    I was diagnosed with Celiac Disease early in 2013. The relief I felt when I started to change my diet and life was immense. My family is very supportive (although I did have to explain about cross-contamination), but work is another thing. No one here seems to understand that it is a serious issue. No matter how much I try and explain. I get the eye rolls, the “aren’t you going to eat birthday cake” with the glare because I am apparently not participating because I am anti-social, or if they want to go out to lunch (I prepare all of my meals because lets face it I would rather be assured of the ingredients, utensils, containers, and preparation) it becomes a big deal because I do not want to go because of the fear of cross-contamination. I have tried the “gluten-free” foods offered at a multitude of restaurants and there as only been one that I did not get sick at. No one gets just how ugly you feel after ingesting gluten. Nevermind the bloating, stomach pain, headaches, and the wonderful other symptoms! My boss’s father is also a Celiac and he is the only one who seems to understand. But the others……I don’t know what to do anymore, it’s not like it helps my already depressed mood. Any ideas?

  • Tharrell April 11, 2014 at 3:29 pm

    OMG…I feel your pain…I was diagnosed 13 years ago. Talk about feeling left out in the cold because no one had ever heard of Celiacs. I had a new friend a year ago ask why I was such a picky eater. Really?? I love food…I miss alot of things and if I had my choice I would eat just about anything. I explain how I was at my worse 5’6 less than 100 lbs and being diagnosed with everything from Lupus, MS, and depression…I’m not willing to go backwards.

    • InspiredRD April 17, 2014 at 9:34 am

      Ugh yes, the picky eater things makes me so mad. I am NOT picky!!

  • Janie April 15, 2014 at 8:11 pm

    Thank you for your heart. I know your feelings, your pain, your sickness. I get so sick of explaining it to everyone, all the time. I get so tired of the people thinking I am on a ‘trend.’ NO, this isn’t a trend, this is my life, health. I was glutenized yesterday and feel so lousy today. I said it 100 times, too yet, but apparently, she didn’t listen. Now, I am down for a couple weeks. Ugh.

    • InspiredRD April 17, 2014 at 9:33 am

      So sorry you were glutened. Take time to rest and heal. Hope you feel better soon.

  • Pam April 20, 2014 at 10:08 am

    Icy fingers, really? I have that and blue around the tips of my nail beds. Hmmm.

  • catina April 23, 2014 at 10:43 am

    Thanks so much for your honesty. I am 40 years old and just diagnosed with celiac a month ago. Finally after all these years and crazy diagnosis after crazy diagnosis i know what is wrong. But unfortunately im learning the hard way, my doctor gave me diagnosis over the phone and said eat gluten free. So needless to say i have made many mistakes and have been sick constantly in the last month.

  • Katie Borton April 24, 2014 at 6:33 am

    My Mom has Celiacs. I was tested a few years ago and told I was negative. However, I was also told that I will likely develop the disease as I already have a genetic connection, a different auto-immune disease and lactose intolerance. After being on a strict diet that removed all forms of grains from my body for weight loss purposes (I’ve lost 138 pnds), I was able to start adding products back in. My reactions to wheat were as severe as you discussed above. I get sick, like cant concentrate, numbing pain in my stomach, swollen to the point my clothes don’t fit…sick. I talked with my doctor and she said the severe reaction means I have a sensitivity and should maintain a gluten free diet. I understand that my problems are not as severe as those who are suffering with Celiacs, but I also get discouraged by people who treat what I am going through like it is the cool thing to do. I have no choice. Three days ago, I unknowingly ordered a gluten filled light frappechino from Startbucks. Within hours, my body was so swollen my clothes wouldn’t fit (1.5 inches in my hips and 1 inch in my waist), my abdomen was sore to the touch, and I needed people to repeat things so I could understand what was going on. After looking into it, my husband and I realized it was the Starbucks. Anyway, I posted a Facebook Status asking for prayer and I ended up so discouraged. People kept posting about their gluten free diets by choice or they have to watch how much they consume (I cant even be exposed without swelling up like a marshmallow puff form of myself). Others told me to drink water to flush the toxins out (not exactly how an allergic reaction works). I wanted to cry and yell all that the same time. Thank you for your honesty, it encouraged me and spoke to my struggling heart.

    • June May 18, 2014 at 3:55 pm

      Yes I feel sorry for your bout cause I know how bad it feels. I even keep clothes a size bigger in the car as we have to visit specialist away from home alot and if by accident I get gluten the first thing I feel is my stomach growing litterally pants getting tight in minutes. Also being lactose intolerant and with a nut allergy makes finding food somewhat a challenge, no almond meal for me. When people say just a bit wont hurt, I now say no it probably wont hurt as I COULD die. Then they get it well sometimes anyways.

  • Suzy April 27, 2014 at 5:51 pm

    I do not have CD, but several other autoimmune diseases which make my body hypersensitive to Gluten. It’s hard to explain to people and it gets really tiring. People think I’m on a “special diet”. No, gluten will not kill me eventually, but the absence of gluten in my diet has dramatically increased my quality of life. My Dr tested me for sensitivity and I was off the charts. I have been GF for a year and went from 2 shots/day and 40 plus pills/day to around 6 meds a day…and I know it’s the gluten, and I can tell when I have accidentally been glutened. Sometimes I almost wish I had CD, bc people minimize the role that gluten plays in my health, and I get that blank stare…do I just avoid certain situations and say no ghank you a lot. Because if it’s not actually CD, then it’s all just a fad diet…trust me, I would give my first born for a bagel, yes, even a year later. I live knowing I am doing the right thing for my body and that’s all that’s important…still painful to feel like a freak 🙁

  • Ashtonp April 28, 2014 at 2:47 pm

    Thank you for posting this!! My husband and all three of our children have celiac disease and I have seen first hand how gluten affects someone with celiac disease! I am so sick of people judging me for my family being gluten free, yes it is a fad, but we do it so my family is healthy! I wish people could see all those nights of 106 fevers with my toddler! Or the sudden change in my daughters attitude and her crying because she doesn’t know why she is being so mean and why she suddenly can’t remember things because her mind is “foggy”. I wish people would just understand how much it hurts when they call my kids “weird” because they can’t eat the cupcakes that the mom brought to school for everyone else and how much that sucks for a kid to be left out!
    Glad we are not the only gfree people out there doing it for necessity!

  • Caroline April 29, 2014 at 6:21 pm

    Yes! I think that’s how we all feel. I now understand how food can make a person behave crazy. I have allergies, asthma, low thyroid, and just recently type 1 diabetes… at 50, like 4 months ago! I stumbled upon the auto immune paleo diet through my own research. My endocrinologist said I had to make no changes in my diet… Just take more insulin. When I asked him about gluten free he said – ya- that’s probably a good idea…really? I also react to corn – so I am going grain free. I am not overweight, and I exercise a lot. My husband and I cycle a lot in the summer and enjoy the extended supported tours over 6 days, 400 miles, camping etc… But this year I am afraid to go because I am afraid to eat. The choices are meat eater or vegetarian. I always ask about plain unseasoned choices, with no sauce, dressing, marinade etc… I can pick out what i think is ok, and mention that this is not a choice, this is a food allergy/intolerance necessity. But alas- Most folks just don’t get it – they think we are hypochondriacs, complainers, whiners.

  • Emerald May 2, 2014 at 4:24 am

    Thanks for your site. I am early 40s and diagnosed with coeliac disease 7 years ago. After a shaky start I am pretty confident I can manage my diet quite well. That said I inadvertently contaminated myself in a careless action a few days ago. In addition to the physical digestive symptoms, I also have difficulties focusing my eyes, and mood symptoms. Today during a work meeting I had tears streaming down my cheeks much to the shock of my colleagues. Thankfully I could make the link and ensure them that nothing dramatic had happened.

    Also by any chance has anyone found stress exacerbates coeliac symptoms even if you think your GF diet has been pretty strict?

  • Mercy May 6, 2014 at 8:33 pm

    I have a friend who is gluten free and gets major fatigue problems when she encounters gluten. Thanks for posting this.

  • Angie Vayda May 15, 2014 at 7:02 pm

    I read an article today on FB about how “Gluten Free” makes you feel better, is only in your head… I am not diagnosed ciliac, but can almost say with all my thousands of symptoms I have it… I am waiting to get on my husbands new insurance to go to a doc. I have had a hell of a time getting a doctor to test me for it. I have gotten the run around for 4 years.

    They claimed I had Carpal tunnel, then nerve damage, then I had lupus, or RA, I am very irregular, and always in pain. All these tests came back negative. Who do I go to to get tested? I have been to an Allergy specialist, an internal medicine doctor, a primary care physician, and my ob even. All of them tell me to just eliminate the gluten and I will be able to tell. I want answers gosh darn it…

  • Shelby May 20, 2014 at 8:04 pm

    I’m only 16 but went 10 years without knowing and I now have Juvenile Rheumatoid arthritis because it was not taken care of by doctors. I not only have Ceilacs but I have a wheat allergy, when I’m around it my throat will automatically swell shut and I get told its fake because its not a sever thing. When people are now using it as a fad they don’t understand how much it hurts the rest of us who actually have it. Glad to know there are other people out there frustrated by this new fad!

  • Andrea May 23, 2014 at 2:10 pm

    Thank you so much for this post. I was recently diagnosed with celiac disease, being extremely malnourished and having several doctors miss this diagnose, because of that I have severe problems with my small intestine not excepting any nutrient and having no iron at all along with other problems. I have been so down through this process of trying to introduce not just the gluten free lifestyle but to introduce food back into my body with getting sick every time I eat anything. Your inspiring words helped so much to give me hope. Thank you.

    • InspiredRD June 4, 2014 at 9:09 am

      Thank you Andrea. It gets better, I promise 🙂

  • Jessica Pero May 24, 2014 at 8:23 pm

    I have not been tested for Celiac but am *definitely* gluten intolerant and, I have been told, most likely have Celiac. I have a couple of questions and I’m hoping you can shed some light on the subject. First of all, the testing for Celiac- they WANT you to eat gluten before being tested, correct? (I’m not willing to do that. I have 4 little ones and I can’t put myself or them through it). The mood swings…OH. MY. GOODNESS. This is so me but I never put the pieces together before. Did that come on suddenly for you or gradually? I have had these issues for a good 5-6 years but it gets unbearable when I get “glutened”. I have fibromyalgia that all but disappears when gluten is out of my diet. I get migraines when I get “glutened”. I also am vitamin D deficient (working on that) and have recently learned that protein is a key in my diet- if I don’t have a lot of protein, I feel like crap…not sure if that could possibly be related? My 8 year old daughter has a constant runny nose, has urine “accidents”, and is extremely emotional (worse than a pregnant woman) when she has gluten. These stopped completely when I took her off. I was actually surprised, but glad to know the cause. My 9 month old son broke out in pimples all over his face when he was accidentally given gluten, too. My other two children and my husband seem to have no issues. We have not been tested for Celiac but again, I’m pretty positive in myself that it is there. Is it worth testing for? Either way, I’m not going to eat the stuff…it’s just not worth it. Ever. :/ What should I do from here?

    • InspiredRD June 4, 2014 at 9:09 am

      All of what you are describing could be caused by gluten. I know Shauna’s daughter (glutenfreegirl.com) has accidents when glutened. If you’re not willing to go back on gluten for the test (I don’t blame you at all – ugh), you have two options: Have your family tested for the gene (you can have a lab come to your house and swab everyone), or Go gluten-free for good no matter what. If your kids are still eating gluten, you could have them tested (blood test). For you, I just don’t think it’s worth it if you aren’t going to eat gluten no matter what. I hope that helps.

  • Roxi Phillips May 30, 2014 at 4:56 am

    I was just diagnosed yesterday… so here I go. Life changing. I’m bouncing between tears of understanding why I’ve been so tired, so achy, so grumpy, to tears of fear of potlucks, birthday parties, holidays, to tears of joy from finally having an answer. I just keep telling myself, It is what it is, and I’ll be ok! I guess I’m on a new journey and I look forward to getting my health back! YAY for a diagnosis! I’m glad I found your blog and FB page.

    • InspiredRD June 4, 2014 at 9:05 am

      Yes YAY! and WAAAAAH! at the same time. It is overwhelming at first, but I promise it gets better over time. Let me know if you need anything!

  • june May 30, 2014 at 6:51 pm

    thank you for this write up, I have two daughters with celiac and this helps a lot to understand how they feel.

    • InspiredRD June 4, 2014 at 9:04 am

      Thanks June, I’m glad I could help.

  • Trina June 2, 2014 at 6:26 pm

    Celiac disease.. I fight with that diagnosis on a daily basis. It is hard..
    I just wish people could understand that.

    • InspiredRD June 4, 2014 at 9:00 am

      As Gluten Dude would say, keep fighting the good fight 🙂

  • Laura June 7, 2014 at 10:27 pm

    Oh man, do I ever feel you! Thanks for writing this post. The way it’s become trendy to make fun of people on the gluten free diet is killing me. They are adding so much insult to the injury of having celiac disease. xoxo

  • Hope Romine June 15, 2014 at 1:17 pm

    I totally relate to all you mentioned. I think holidays are tricky going to families houses for the holidays.They act like they under stand but im pretty sure they dont i do sometimes feel like a burden if i cant eat what they have i sometimes feel like a whiner but i always bring something from home just in case… more voices like yours it will eventually be more understandable for others…

  • Anna June 19, 2014 at 8:59 am

    I don’t have celiac disease or villus atrophy but I do suffer the same symptoms you describe when eating eating gluten, making me feel sometimes even more of a fraud.

  • Karen Gardiner June 20, 2014 at 9:20 am

    My 6 yr old son was just diagnosed yesterday. I am in tears right now after reading this. I had some understanding of CD before this but we had no idea and where not expecting this diagnosis at all. We where expecting a diagnosis of Juvenile Arthritis. I have shared his recent diagnosis with a few friends and everyone single person I have told has said oh it will be okay its just a matter of you changing his diet. NO, no it’s not. There I am learning there is so much more to CD. Our social life, HIS social life, everyone else in the house’s life will be effected by this. There is no more let just go out to eat tonight and just go to whatever place we can find that looks good. Birthday parties, sleep overs, soccer games and playdates everything changes so please stop telling me that it will be okay it’s just changing his diet because it is not. We have about a month before we have to switch to GF. He has to have a scope with biopsy 1st and we have been told to keep things normal until then. Thank you so much for this and I will be sharing this so maybe my friends and family will get a better understanding of it’s not just diet.

  • Kori June 25, 2014 at 8:06 pm

    I started my gluten free journey about a year ago. The ticking time bomb of moods, the avoided your family because you don’t want want to say something you’ll regret, having someone talking to you and just staring at them because its like the words are hitting glass wall. You can see the words but they don’t make sense. Exhaustion, fatigue hitting you like a truck over a blind corner and you can’t stay awake standing up. My Dr always told me it was “normal teenage hormones” “here is some medicine for your ADD” “just get your sleep schedule in line” “ill give you a steroid shot for that rash you keep coming back for, hopefully it will help this time” It is scary as a young adult to not know why this is happening to you. To be told you are making these things up. Reading this post was like reading something I have been feeling for years. I have not been diagnosed because I do not want a “pre existing condition”. My sister came back negative but we both can tell if we have been glutened. That’s all the proof I need to avoid it. As a server if someone tells me of an allergy I will make sure to do my best of informing them and my grill line of the allergy. So I want to give you hope, some of us do understand but yet we are never safe from it.

  • Angela July 9, 2014 at 8:53 pm

    Thank you!!!

  • Guest July 9, 2014 at 10:51 pm

    I intuitively decided to try an elimination diet due to a variety of issues I was having and researching on my own. I had no health insurance and was distrustful of the medical field anyway after some bad experiences in the past of having to diagnose myself because specialists never talk to each other or think enough about how all our systems are linked. I was stunned by the differences I saw and felt within two weeks! It took me a good two years to really figure out what I was doing and how to fully beware of gluten. I was scared of the reactions I’d have when I accidentally ate some – particularly scary was the lymph nodes in my neck swelling within 15 minutes to 3 times their normal size and being able to feel that swelling as it was happening (I mean, anaphylactic shock is swelling in the neck/throat, after all!); particularly miserable was my skin breaking out for a month after and being 100% constipated for 2 solid weeks after. Yes, it is possible. I know that my case is not nearly as severe as some people’s, and for that I am incredibly grateful. But it is hard to deal with all the feelings of isolation, separateness, and distrust and fear (which you try to play down so as to not come across as an hysteric, but which are very real and exhausting to contain and cope with). It is hard to see the disbelief in people’s eyes when I explain my reactions and how I know beyond the shadow of a doubt that I can not eat gluten or I will only get sicker and sicker and will probably have a shorter lifespan for it. Part of me doesn’t care what anyone thinks, but as someone who was always proud to be low maintenance, to be willing to eat almost anything, to be very laid back and game, it is like I have to now become a different person from who I’ve always thought of myself as. No one can really understand the frustration and pain of not being believed about your own body and feelings unless you have been there. Our food sources have only been industrialized for a relatively short time. We can’t possibly know all that goes on between a source and our tables. We don’t know how ancient foods have been altered. We don’t know how pesticides, which are also only relatively recently been widely used, affect our systems. There is so much we don’t know that I just don’t get why people have such a hard time taking others’ physical issues seriously and being respectful, at the very least. This is not fun. I would never choose this for myself. I have no choice. I’m not stupid. I’m in touch with my body. I have seen again and again how I know it and can figure it out better often than any doctor. And everyone should know and believe the same about themselves. Your health depends on it. Doctors help, but it begins with you. I don’t want to be diagnosed because I can’t imagine having to eat gluten frequently for 6 weeks to 3 months just to take a test to confirm how sick I know I am after eating gluten for 6 weeks to 3 months. It’s a real catch-22. But I worry about not knowing the state of my small intestines, my nutrition levels (I was low on iron in the beginning and couldn’t give blood), etc. The symptoms do not all resolve quickly after quitting and my energy is still not what it used to be. I’m not quite right, but I’m a lot better. Once I get my health insurance, I’m sure I’ll have to prove I have a problem by making myself sick again in order to have any subsequent tests covered. Great. Can’t wait.

  • mardifromOR July 9, 2014 at 11:12 pm

    THANK YOU so very much for posting this! Having CD can be a tough road, and for years I couldn’t understand what was happening to me. I also went to many Doc’s all telling me…this is in my head, or add more FIBER, or it is menopause, or I needed to lose weight and take psych med’s!!! Boy am I glad Doctor’s understand now, and we have choices in restaurants and people who actually understand how ill I could get! I love your descriptions…when I read it I got watering eyes, knowing others experience this! When you are not alone, it makes the journey a bit easier!! Best of Luck to you!!!

  • Nicole Proffitt July 10, 2014 at 4:20 am

    couldnt of said it better myself 🙂 thank you, you are defiently not alone.

  • Madison July 10, 2014 at 5:44 am

    This is so perfect! Thank you so much for managing to put these feelings out into words.

    • InspiredRD July 10, 2014 at 12:58 pm

      Thank you Madison 🙂

  • Letitia Baker July 10, 2014 at 6:34 am

    By the way, in addition to Celiac there is something called “gluten ataxia.” It’s not the same as Celiac – I understand it’s a different inflammatory pathway that affects the nerves/brain instead of the gut – so if a person has gluten ataxia he or she might test negative for celiac. Then again it’s probably possible to have both problems. I was confused for years by the psychiatric and neurological impacts of being “glutenized” – – my teeth would clench, my short term memory would go – – back spasms – – falling “up” stairs – – I even got pulled over by the police one day for driving too slow! I was in my 40’s when I finally figured it out. All these problems go away when I avoid conventional baked goods. I don’t need an official diagnosis to know a GF diet is best for me. Best of luck to everyone!

    • InspiredRD July 10, 2014 at 12:58 pm

      Oh wow! Good to know, thanks!

  • Carrie July 10, 2014 at 8:29 am

    I want to cry my eyes out reading this! And though I am sorry others feel this way I am a bit relieved because EVERY single bit of this is sooo me. And even though you are right that there are some really fabulous people and supporters out there it is still a lonely feeling at times to go through being “glutened”! Thank you for the reassurance that every time I can’t leave my bedroom/bathroom for days, end up in the hospital for a week, or feel like crap for a good month after that I am not the only one.

    • InspiredRD July 10, 2014 at 12:57 pm

      It’s so good to know we aren’t alone! XOXO

  • Amby July 10, 2014 at 12:03 pm

    I wish someone had told my family to get tested BEFORE we tried going gluten free, none of us (all the girls in the family) has an official diagnosis and we can’t go back on Gluten just to get tested (not unless we want to lay there for 6 weeks wishing death would take us already) and most people don’t understand (or want to believe) that symptoms can and do last longer than just a day.

  • Simon July 10, 2014 at 3:29 pm

    I want you to know this is inspirational, well written and you’re a credit to that Coeliac community you talk about.

    Well done you. :o)


  • Cathy July 10, 2014 at 3:42 pm

    I shared this article last night with Actress, Jennifer Esposito on her facebook page. She posted it and it had over 500 shares by those who read the article. Just thought I’d pass that along…I think you really wrote a great piece that demonstrates how many of us with celiac feel but don’t know how to express.
    The facebook page is called Jennifer’s Way. Thank you! 🙂

  • Debra July 10, 2014 at 4:55 pm

    THANK YOU!!!!!

  • Alecia July 10, 2014 at 7:13 pm

    I agree to all of this!! Its bad enough to have to figure it out but its a slap in the face when people just think your on a diet or have some wierd allergy. I just always say I have Celiac disease not an alergy cause i cant stand it!! Yea I always tell people look if by any chance i get glutened dont come around me becuase I cant promise what i say will be nice or how i will act because it is a wierd reaction. Its so nice to read a blog that so honest because sometimes i feel like every ones reaction to gluten is just stomach pains where mine is all migranes and moody scaryness. Thanks for posting this!

  • Kara @ Just1Step July 11, 2014 at 5:27 am

    I know I’m way late in commenting, but I’ve read this post several times since getting diagnosed with celiac disease, and it’s really ringing true to me right now.

    I got glutened last weekend, and the symptoms started Sunday. It is now Friday and my midsection is still a mess and I’m still exhausted. Of course I’ve had a myriad of other difficult symptoms. It’s so disheartening.

    So thank you for your honesty and for sharing. It makes me feel a little less alone.

  • Tiffany W July 11, 2014 at 8:45 am

    How would someone who’s eaten gluten their whole life know if they might have celiac disease?

  • neisha August 11, 2014 at 4:04 am

    I absolutely hate when people go oh here we go like its ethier I get sick or feel nornal 🙂

  • Sarah Olencewicz August 14, 2014 at 2:36 am

    yep, yep and yep. Yes, I need a new chopping board, yes I would like you to wash the knife and why would you not change your food handling gloves for me? No I don’t want my pasta boiled in the water the regular pasta has been cooked in – and while we are on that, why am I paying for an entire packet of the stuff for one serve? And for the love of God, could the GF option for a cake NOT be orange and almond or flourless chocolate cake…

  • LeeAnna August 18, 2014 at 1:42 pm

    I know this post is pretty old, but as a 17 year old who was just diagnosed a year ago this is so good to hear. Because its not easy. I feel horrible whenever I tell my friends that I need special food or I can’t eat at their house. I’ve cried over it multiple times. My family will even forget sometimes and I’ll find myself not eating with everyone. It makes me angry because of how jealous I am. It hurts my feelings when people say “oh yea I tried gluten-free, it only lasted a little while” yea try your whole life. I don’t have a celiacs support group… I don’t even know anyone else where I’m from that has it. Sure I know people who are gluten intolerant, but it’s not the same. Thank you for your story.

  • Christa August 20, 2014 at 3:14 pm

    I just got diagnosed by my gastro doctor. I am completely overwhelmed and have four children. I am concerned about them too. ONe has the bloated belly and explosive bm’s. I am glad to find your site.

  • Alex August 20, 2014 at 5:56 pm

    This post described more of my symptoms spot on. I haven’t been tested for Celiacs because my doctor never even entertained the thought of gluten being the root of my problems. As a 17 year old, I definitely did not want to go through a colonoscopy to try and find anything that would explain my frequent trips to the bathroom, why I got up in the middle of the night on average 4 times just to go the bathroom, and why I felt like my insides were cooking themselves. I was so moody and rude to everyone that I would get angry with myself because I didn’t know why everything that was coming out of my mouth was so uncalled for. Since my mom took gluten out of all our diets, I have felt so incredibly better despite being glutened from mixed peanuts at my grandparents. It’s so frustrating because my grandparents think that all of this is the equivalent of a cold; that it’ll go away. It sucks being only 17 and having to deal with this because all my friends want to do is go out and eat and I can’t. I feel so guilty because whenever I go over to my girlfriends house, I can’t eat anything they make. It’s difficult and people need to realize that this is our lives and we never asked for this.

  • stephanie September 11, 2014 at 4:55 pm

    This beautifully written truth = me! Well written and on point. Thank you for putting our lives into words.

    • InspiredRD September 14, 2014 at 7:48 am

      Thank you Stephanie.

  • Shelley September 13, 2014 at 9:50 pm

    I wish my 3.5 and 5 year-old could get these words out.

    • InspiredRD September 14, 2014 at 7:46 am

      Yes! I’m sure that is incredibly frustrating.

  • cathi October 6, 2014 at 5:10 am

    Thank you. I don’t feel alone.

  • Peter October 6, 2014 at 6:29 am

    Stop self diagnosis. Stop reading all the bullshit you see on internet, then believing it to be true. Why are you people so gullible? If you’re a true Celiac I understand and empathize with you. But let’s be honest here, many of you are running around screaming ‘gluten-free, gluten-free’ just like in the 90’s you were screaming ‘no carbohydrates, no carbohydrates’ praying to the Atkins gods because you consumed a carrot (no word of a lie, “she wouldn’t eat carrots because they contained carbohydrates”).

    Then there is the guy that says, ‘ever since going gluten-free’ I’ve lost 20ibs. Yet, he failed to mention that he’s been going to the gym, running a mile…. for the same amount of time.

    Stop getting your resources from Wikipedia, About.com, WebMD… STOP SELF DIAGNOSING, go see a doctor—A REAL DOCTOR, a MD, get properly diagnosed. Or go see a shrink.

    • InspiredRD October 6, 2014 at 9:56 am

      Um, Peter, why are you so MAD AT THE GLUTEN FREE PEOPLE? Some people can’t afford to go through the testing, or their doctor told them to go gluten-free before they got tested, so the tests were inaccurate. Some people have non-celiac gluten sensitivity and feel exactly the way I feel when I get glutened even though they don’t have celiac disease.

      • Mike Carey January 31, 2015 at 9:21 am

        I can help anyone with health issues by finding and eliminating the cause.
        I have been given a unique gift and perhaps I
        can help you or someone you know. I am
        able to tap into cellular memory to determine the cause of most health problems
        as well as the natural remedy. I have done
        this successfully for the past 18 years, and I do it over the phone via a
        toll-free number. Yes, it works and is
        extremely accurate. Please visit my
        website for more information. God
        Bless! Mike Carey


    • Jan October 29, 2014 at 1:01 pm

      I have searched for 5 years and gone to Drs. trying to find what is wrong with me and not one Dr. tested me for Celiac or even mentioned it until I went to the last Dr. and I was tested. I was not Celiac but I have found out I have extreme sensitivity to Gluten and I feel better than I have in 5 years.You would not be so closed minded and understand that people have allergies and sometimes you have to keep pushing to find out what the problem is, I think very few people could stay on a Gluten free diet if it was just a “FAD” and self made up, it isn’t an easy thing to do, but it is SO worth feeling better.

  • M2LA October 7, 2014 at 1:06 pm

    I just had a blood test done and my antibody level was “abnormally high” according to the doctor. I’m waiting to get an endoscopy in order to get a 100% accurate diagnosis. Anyway, I’m A-symptomatic and wouldn’t have known unless my orthopedic doctor didn’t see signs of osteopenia and osteoporosis. I have anemia and they were never able to figure out why I was anemic, but my body responded to the IV iron drips, so they never tested for anything farther. Come to find out, it’s more than likely because I have celiac disease.

    I’m super stressed out about it and this is partially why. I haven’t gone gluten free yet, as instructed by my doctor, so I can get the most accurate endoscopy result.

    Any support I can get will be great at this point. My spouse is being supportive, my family is supportive, but I’m the one freaking out. I don’t know how to change my diet, to such an extreme. Thank you for this article, as this is the type of thing I’m nervous about.

  • Jan October 29, 2014 at 9:44 am

    I agree with everything you said, my problem is a little different. I was tested for celiac and the test was negative but my Dr. wanted me to try a gluten free diet and I feel so much better than I have in 5 years, I actually feel like a normal person again. I am not doing it to lose weight or because it is a fad, I am doing it because I have searched for 5 years to find out why I have felt so bad . My struggle comes when people find out and say oh well you don’t really have to do it , you don’t have Celiac…..YES I DO have to do it, I have a severe sensitivity to gluten and it makes me feel terrible and pretty much puts me in the bed ! If someone has a shellfish allergy people don’t give them a hard time, people need to realize this a real thing.

    • InspiredRD October 29, 2014 at 5:11 pm

      Jan, I am so glad you are finding relief. I hope my words didn’t minimize your need to go gluten-free. I totally agree with you!

  • Sometimes it’s ok to break the rules November 10, 2014 at 1:40 pm

    […] there are times when I want to say yes, but I just can’t. Days when my body forces me back into bed and doing anything is […]

  • Jan November 12, 2014 at 8:02 pm

    Yes,yes,yes. I particularly like the waitress eye roll. Recently I had “gluten free” pasta from a well known Italian chain. Took a week to feel normal. A half a bread stick takes two weeks.. A long two weeks. Extreme fatigue, bloating (always lovely)…in the bathroom every 15 mins. I don’t want this, don’t want to eat like this. I have too. I went decades undiagnosed. I have never had nausea with this…stomach pain and lower abdominal issues, rashes, neuro probs.
    It ticks me off as well… Turning celiac into a fad thing. Ignorance.

    • InspiredRD November 20, 2014 at 8:28 pm

      Oh no! I haven’t ordered GF pasta because it makes me way too nervous!

    • Mike Carey January 31, 2015 at 9:19 am

      When you get rid of the things that are compromising the body, the body heals itself and gluten is rarely an issue.
      I have been given a unique gift and perhaps I
      can help you or someone you know. I am
      able to tap into cellular memory to determine the cause of most health problems
      as well as the natural remedy. I have done
      this successfully for the past 18 years, and I do it over the phone via a
      toll-free number. Yes, it works and is
      extremely accurate. Please visit my
      website for more information. God
      Bless! Mike Carey


  • mallory November 13, 2014 at 5:05 pm

    Totally agree. Well said

    • InspiredRD November 20, 2014 at 8:28 pm

      Thank you, Mallory.

  • Kali January 2, 2015 at 5:53 pm

    Thank so much for this post. It is a relief to know that somebody out there has the same symptoms as I do. Most people believe that Celiac and Gluten Intolerent people only have stomach issues or a skin rash… Your Dr. Jekyll and Mr. Hyde analogy is perfect. After consuming gluten I feel hot, skin goes flush and sometime my arms get mild hives then I turn into “the Hulk” as I like to call it. I get mad and irritated at the drop of a hat and over seemly nothing. It’s really bad. I used to feel like an awful person before figuring out what the problem was, like a possesed person able to be aware of what was going on but unable to control my temper and actions (maybe Bibical folks were reacting to their high grain diets?) Depressed and in pain, luckily my own mother was able to help me when the doctors thought I was simply mental and were ready to put me on antidepressants.
    My mother has Celiac and after trying out a gluten free diet my symptoms dissipated until after the first month one day I just “woke up” and felt “human” again. It sounds utterly illogical to anyone not suffering from this disease, but it was awful to not know what was going on or why. Still get “glutened” now and again by accident. Still need to tweak my diet and believe dairy products are the next item to be eliminated. Going to request a through allergy test at my next doctor’s exam. It is difficult when food becomes your worst enemy. It sucks when people tell you that you must be gluten free due to a trend not a REAL medical condition. And all of the “gluten free” products on the market are an annoying crutch for those who desire old comfort foods they miss or the trendy. A lot of potato chips are GF, but it doesn’t make them healthy to gorge on with wild abandon. Some so called GF products have made me sick. So thank you Alysa for sharing your personal journey, I can totally relate.

  • Erica Gates January 21, 2015 at 12:23 pm

    Wow. That was so on target. All of our symptoms are different but the over all part of this article is SO true! Thank you for sharing this. I will be letting my husband read this.

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  • Sam April 2, 2015 at 4:31 am

    I found your blog from Google images. My eyes are looking like that, hooded like with thyroid but I’ve been tested negative. I haven’t been tested for celiac if there is a test but I basically get quite a round face next day and mild stomach pain sometimes. It’s the face bloat and roundness I can’t stand and I can’t lose weight at all even though I east real food nothing processed no rice pasta cereal are rarely legumes although I think I’m fine with them. When I eat bread its my face I have a problem with. And my stomach is huge though I’m not over weight

    • InspiredRD April 2, 2015 at 8:35 am

      There is a test! Go get tested before you go completely gluten-free. Ask your doctor for the celiac blood panel.

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  • Rachel April 9, 2015 at 9:14 am

    Nothing makes me more frustrated then when people say, your only in this to loose weight. I was diagnosed with a wheat allergen and a gluten sensitivity only a year ago. I felt very sick every time I ate, and thought it was always normal. Till I needed to be tested for seasonal allergies to only find out how sever my gluten senstivity and wheat allergy really was. Once I started eating gluten free I feel like a new person.

  • Tannnnn Veee April 20, 2015 at 3:20 pm

    I personally think treating it is super easy but that is just my experience.

  • andrea April 20, 2015 at 10:54 pm

    Absolutely beyond worded correctly. You did an amazing job describing how we feel

  • Sharon Green April 21, 2015 at 12:04 am

    Thank you for posting this! You describe what it’s like so perfectly! (Dr Jekyll and Mr Hyde here too, along with the GI symptoms, joint pain and the anxiety, depression, brain fog and endless fatigue). It isn’t easy having this disease, especially when there are some in the medical profession who don’t even take it seriously! No I’m not on a fad diet! I’m not a health nut! I have a disease that makes my body try to destroy me if I eat gluten! <3

  • joyce April 21, 2015 at 2:48 am

    This article described how I feel perfectly. My family does not understand how I feel.

  • Sarah April 21, 2015 at 5:35 am

    I wish I could be tested. In Canada, it’s a 2-3 year wait to see a specialist, another several months to get an appointment for a biopsy, and another several months to get the results. We went through all of it with my husband. It was so long and drawn out. He was one of those unlucky people with a negative blood test and a positive biopsy. I discovered I can’t tolerate gluten when I started cooking gluten free for him. Every time I eat it, I get sick. And it’s frustrating because I don’t know if I have Celiac Disease or just gluten sensitivity, and it’s a huge pain to have to explain this to people. I wish I could have just gotten a biopsy before going gluten free (and believe me, I *never* “cheat”). I hate this country’s so-called “healthcare” system.

    • InspiredRD April 21, 2015 at 8:48 am

      Oh goodness, that is super frustrating! My sister wasn’t able to get a diagnosis either, but she knows she needs to eat gluten-free for life based on her symptoms. I know it can be hard to explain to people when you don’t have the official diagnosis.

  • jprime April 21, 2015 at 9:15 am

    Great post. My wife son, sister and brother in law are all Celiacs. The struggle is real.

  • Cindy April 21, 2015 at 3:25 pm

    My daughter has it and what I would like people to know is that she can eat food. People are always asking me what she eats. It makes me nuts.

  • Lorae raeder April 21, 2015 at 6:27 pm

    Well said! For some, it is a fad. Sadly, not so for my daughter. 3 emergency room visits and a year of every test imaginable to try to diagnose her based on all her odd and unique symptoms. Finally, diet changes! She is now healthy and happy!

  • Casey April 21, 2015 at 7:59 pm

    I agree 100%!!!! i happen to also suffer from Dermatitis Herpetaformis along with Celiac so along with everything you described I also get to break out in the itchiest rash. One that probably wont go away for a month….It’s not like I don’t want to eat the bread or pasta it just literately feels like i’m dying to do so. Sorry i’m not sorry that I am a picky eater!!!

  • Sev April 21, 2015 at 8:31 pm

    I feel the same freaking way!! Even my two beautiful young kids are more aware and respectful of that painful disease! I get to a point than even eating home hurts! Like you say, Gluten Free has become a trend and it really doesn’t help us, who are seriously sick. I tend to refer to it as a nut allergy that has instant affect on my body and mind. I wish this to no one and I hope everyday that my kids don’t inherit that from me….. Thank you so much for sharing, this is how I feel too and never got the courage to say it out loud!! It sucks!

  • Liz Glynn April 22, 2015 at 3:26 am

    I have to tell you, this was a very raw and real post. I do not suffer from celiac; however, I have battled my own issues and know how frustrating it is when people don’t take it seriously. I think more people like you need to stand up for what is a very real disease. I applaud you! Thank you.

  • Briana Lyn Delaney April 22, 2015 at 6:51 am

    I do not have celiac disease HOWEVER, I get it. I am sensitive to CELLULOSE in vegetables…by body cannot process it witout help (like tomato in a sauce are ok, because they are basically “pre-digested.” Celiac disease get lots of attention these days. When I mention my issue, which sucks for getting the recommended nutrition, it gets chalked up to “not liking vegetables/fruit.” That’s not it. I have tasted some very good ones, and been in pain or had diarrhea from hours to about a day afterwards…Also wearing me down and keeping me in bed… At least people recognize what you have as real!

  • Maria April 22, 2015 at 1:11 pm

    I can’t thank you enough for posting this. It was perfectly explained. I am sharing it because it’s exhausting. It would be easier to live like a hermit and just cook for yourself but thst is no way to live. But trying to “be normal” while trying to eat out is impossible. This is my new normal and it will never change or get better. And if I let my guard down I get sick. And who would willingly sign up to be sick for a month. Well again thanks for being the voice of many and thsnk you for allowing us to share it,

  • Ellen C April 22, 2015 at 4:24 pm

    I couldn’t have said it better – it only took the Dr.’s 40 years, a hysterectomy and gallbladder removal to diagnose me. I don’t ever leave the house without something to eat in the car just in case. No one can understand the fear of getting caught somewhere with no food you eat.

  • Lezlie April 23, 2015 at 6:29 pm

    I love that you said, “all Celiacs are different,” because that is so true. The hardest thing I have to explain is that I could have no symptoms at all and still be damaging my insides. This could, over time, lead to something very serious like cancer, and eating gluten just isn’t worth that to me. Even getting a little bit through cross contamination isn’t OK, ever. There are some people that will never understand this, no matter how many times I say it. Thanks so much for sharing.

  • justalocalreader April 25, 2015 at 2:27 am

    I’d like to know what you meant by celiac eyes? Your eyes don’t look different so would you please clarify?

    • InspiredRD April 26, 2015 at 8:21 pm

      My eyes are tired and swollen in this picture. Much different than my normal healthy face. Just something I notice if I get glutened.

  • Jess @ Crunchy Hot Mama May 3, 2015 at 7:38 pm

    Preach it! This post is me to a T! I get so frustrated having to explain and defend myself (been diagnosed for over 33 years) with my disease. While it is a pain in the arse, I will say I appreciate having it-in the sense that I get to monitor every thing that goes into my body. It’s come a long way since I was diagnosed so while I’m glad to have the gf options, like you said, it gets frustrating that companies are just jumping on a bandwagon. Maybe if enough of us speak up, we will be heard and respected. Here’s to the other celiacs out there during Celiac Awareness Month…we will not be silenced!

    Check out my post on my frustrations: http://crunchyhotmama.com/2012/12/04/gluten-free-is-not-a-fad/

  • Tony May 9, 2015 at 2:50 am

    Thank you for taking the words out of my mouth. this has not been a problem in my life; however, the biggest blessing in my life! Now I know what has caused my IBS, etc. I am enjoying life and loving every minute!!!!!! Gluten-free

  • Heather June 26, 2015 at 3:20 am

    As a dietician with Celiac, maybe you can help. i have diabetes along with Celiac. I need new ideas! Thanks for your words! I feel the same way, and have similar symptoms when I get Glutened!

    • Alysa July 3, 2015 at 6:00 pm

      Hi Heather! I think your best bet is to go the whole foods route. Are you on Pinterest? There are some great ideas on there!

  • Andria July 4, 2015 at 10:17 am

    I want everyone in my life to read this. It hurts me to go out with friends and see “that look”, the oh-she’s-on-that-fad-diet look. I understand your passion and I completely empathise with you. How immediately it hits , how long it lasts, how I feel. Thank you for this. I’m going to share it with everyone in my life so they can understand that I’m not trying to lose weight, I’m trying to save my life. Thank you for pouring out your soul, it certainly made a huge difference for me.

  • Pauline August 11, 2015 at 12:28 am

    I am reading all the comments from 2013 through last month. I was diagnosed with Celiac 10 days ago. The doctor says my blood work is off the charts positive. I have multiple vitamin/mineral deficiencies. I am worried about being a pain at Christmas and Thanksgiving and the next family (of 16 plus people) lunch out. Is it easier to miss out? Bring my own food? I read about cross contamination, but wonder do I have to really worry about that??? Can my fries be in the same oil as breaded chicken? My husband says its fine – I can’t imagine that such a minuscule amount of anything can be a problem. What I’ve read says this is a big no no. I’m worried I’m being over paranoid, and that I’m just being annoying for the attention. Then I worry I’m not being paranoid enough – that it doesn’t matter how self centered people think I am. How do I even know if I’ve ingested gluten? My symptoms, well other than my Iron deficiency anemia I don’t think I have symptoms. I mean I have all the symptoms listed but can explain most of them away or just conclude that my whole family is like that so its normal. Fatigue and such can be linked to my anemia. Depression runs in my family. Digestive issues, I (like 90% of my family) have a sensitive tummy and it doesn’t take much to need the bathroom to myself for a day or not need it for a few days. Tummy aches, nausea all normal in my family. Are all of these the Celiac? Is my whole family Celiac? Am not concerned enough? Do I need a dietitian? This is how I feel and wish I could find the answers. My biggest frustration has been that ‘every celiac patient is different’. How does that help me find the right path? You post is great. I’m just sharing my short little 10 day window of this new life.

  • Susan Sowers September 28, 2015 at 8:26 pm

    I have Celiac and felt better after going off gluten. However, some of the stomach problems persisted. My GI doc said I could have problems with lactose and/or fructose which is common with celiac. I went off lactose but no change. I then went off fructose and that was certainly it. I feel great now but fructose is in all fruit and most vegetables. It’s well woth the trouble though. Loved this article – I’ll save it and send copies to all my friends. THANKS.

  • Teresa October 11, 2015 at 3:54 am

    I have been diagnosed with Celiac Disease, it is extremely difficult. Every time my husband or anyone invite me out to dinner, or want to eat out at a restaurant I feel a rush of panic, anxiety and absolute fear come over me, then when trying to research or choose before leaving for the restaurant I begin to feel this horrible dread and become overwhelmed. I am so relieved you have shared your feelings, thoughts, and experiences, because no one that does not have Celiac Disease can or will fully understand how very difficult it is. I too have experienced a lot of your symptoms as well as my nerve endings making me want to literally crawl out of my skin, and not to even mention how long it takes to buy groceries, because it requires reading every small print of every label when purchasing anything even the things that read Gluten Free. So from one Celiac to another, THANK YOU, I truly appreciate all that you shared

  • Anne Windsor October 12, 2015 at 11:17 am

    I have had celiacs for a long time now. Mine is so bad I never eat at a restaurant ( even gluten free) and am very careful with “gluten free ” products . One put me in the ICU for 3 days as I now go into anaphylactic shock on top of all the fun intestinal tract illness. I cook everything myself and feel soooo much better. There are a few gluten free products that I use but they must be made in a totally gluten free facility. I have stayed well this way now for about 6 years. I even call all the manufactures of food and medicines both OTC and perscription., but it becomes a routine after a while and you feel so much better it is worth it.

    The bad part is my family. They are great but I feel bad I can not join them at a restaurant or a friends house for a meal.They feel guilty.
    We all have something and it could be FAR worse.

  • Jaime A. Heidel October 20, 2015 at 4:59 pm

    What a great article! My personality and ability to concentrate are affected when I eat gluten, too, so I understand. I’d know that “celiac stare” anywhere.

  • Lauren Hall (Go2GFGirl) October 27, 2015 at 2:45 pm

    I completely understand where you’re coming from. It’s frustrating having a disease that not until now people are finally starting to think of as an actual problem. I was diagnosed 9 years ago and it’s been an interesting journey.
    I now write for a website called Going2Natural ( http://www.going2natural.com ) I am their Go2GFGirl (Go2 Gluten Free Girl). I write articles and post recipes that are both gluten free and paleo as well as videos.
    We’re always looking for content if anyone is interested come check out the site! You can subscribe or contact us for more information.
    There is a big community of Gluten Free and Organic people out there. We’re always happy to welcome another to the journey and to help each other as we go.

    Here’s a link to my articles, recipes and videos on gluten free!

  • Bella Fojut November 5, 2015 at 5:50 pm

    I have a question. I was tested once but I was already on a fairly low gluten diet already, proboably only once a week maybe. The tests came back negative but now I notice that gluten gives me a really bad anxiety and depression hangover the next day. I have really bad OCD so it make my day even worse. Since then I have given up gluten. Do you think that it’s a good idea for me to test again and what should I do to make sure that the results are correct? Am I supposed to eat gluten the day before/ week before the test? What is the protocol? Thanks for the post.

  • Melanie Haywood November 6, 2015 at 12:12 am

    Thanks for this article. It really hits close to home. I don’t have as bad a problem as you but I often feel the same way. I have IBS and I think about each piece of food that goes in my mouth. I’ve heard that IBS is just the beginning and can lead to celiac if not gotten under control. What,if anything,have you heard? Keep up the fantastic work.

  • Alyssa J. November 6, 2015 at 7:55 am

    Alysa, thank you so much on being brave enough to talk about this. I have tried for a couple years now to figure out a way to say it but I just couldn’t. Your post has brought to tears. Finally someone understands my pain, fear, and frustrations. I feel like Celiac makes you a prisoner. It dictates your every move and how to live because of the fear of contamination. I have had people tell me oh your just like the celebrities. No I’m not like them. I have an illness they don’t. I’m sorry if I am kind of ranting here, I am just over joyed that someone understands. Thank you for being you, I appreciate your story and message. Thank you.

  • Kathy Simkins November 7, 2015 at 12:17 am

    I know exactly where you are coming from with your post. I am 62 years old and have probably been gluten sensitive my whole life but no one ever pin pointed it as part of my problems. I found by accident a little over a year ago. One tiny crumb of gluten and I can’t swallow and can nearly not be able to breathe. I have to be on my toes and take liquid Benadryl as soon as I realize that I am starting to have a problem or I just have to ride it out. I wish it was “all in my head”! Then I could eat all the things I have eaten most of my life. I never was into breads, pancakes and waffles, now I understand why.
    Within a week of going gluten free my husband pointed out that my fibromyalgia and chronic fatigue symptoms had all but disappeared. I can never go back to wheat in my diet. I still grind whole wheat flour and make his bread in a bread machine every week but if that proves too much for my system I will make him either learn to do himself or buy it at the store. I have my own toaster, butter dish and grain mill that is off limits to everyone but me. I take my own food everywhere I go. I never take a dish of anything to share because I have had one cross contamination situation at a family event. THANK YOU for all that you do to get the word out. Now I am going to check out your recipes.

  • Adrianne November 9, 2015 at 7:28 pm

    Just a small addition, I have three kids (two with a corn sensitivity and one with a gluten and corn sensitivity) and I ran across some research that has linked many cases of celiac to having a corn sensitivity as well. It’s not an easy path and my husband (who has not been diagnosed with anything) has a hard time understanding it even though he has seen first hand what happens to our kids when they have something they aren’t supposed to. Best of luck to everyone!!

  • marie November 15, 2015 at 1:36 pm

    doctor sent me for blood test,told me that it doesn’t always show up in blood test, which it didn’t when results came back ….so fully expected to be sent for endoscopy but no he gave me F.O.D.M.A.P diet sheet which includes gluten free and my insides do feel better et etc ,I haven’t followed it to the letter just the gluten and wheat bit as im sure im ok with the other stuf on it like sugar etc and as said cutting out gluten my insides are deeling better no none of that tight uncomfortableness no bloating

  • Jett December 4, 2015 at 5:25 pm

    Thank you so much for writing this. My husband has this and when gluten gets in his food I have to watch him suffer and “try to be strong” for sometimes months at a time.It takes him away from me and its so scary to watch all the muscle he works so hard to build just disappear during a flair up. It brings me to tears when people roll their eyes at him or tell him this does not exist and he is “over reacting.” I want to punch them in the face and ask them to not be able to spend time with someone they love for a month; ask them to imaging having your partner in life come home looking like a sheet of white paper and struggling to even do the dishes or do anything but be ill, go to work, and sleep. Ask them to be able to see this person and not be able to go on dates outside the house, have them fall asleep during every movie cause their body is exhausted from being unable to process food due to someone not being careful with their food and it touching gluten. Holding them at night and listening to their insides popping and gargling like they are going to pop out from their body and having that person tear up and apologize for being such a pain in the butt all the time. If this disease is not real then my husband deserves the biggest Academy award in the world and his own TV series, cause his blood pressure spiking and all the noises that come from his innards are pretty darn convincing! Open your eyes people. THIS IS REAL AND PAINFUL.

  • Jessika December 13, 2015 at 8:32 pm

    Sing it, sister! I do not have celiac’s, but I am allergic to wheat–and although there are differences, I know just how you feel. Thank you for writing this! I wish the whole world would read it. My kids have food allergies, like me, and my in laws thought it was just some crazy random thing from my imagination until my son got sick at their house. They were completely freaked out and thought he was going to die. Like you, I’d love no never have to talk about food issues or think of them again, but it affects everything we do. I can’t stand when people do gluten free as part of some fad. It decreases the validation of people who really need it. I am glad you said it, too. Thanks!

  • Linda December 16, 2015 at 1:01 pm

    I don’t know what I am as I’m now nearly 63 and have given up getting help. My blood test was negative for celiac was negative and was pretty much told, don’t eat what makes you feel bad. Remembering my childhood, I was suffering from as far back as I can remember. Gluten makes me go very cold, shaky, visual disturbances, terribly sleepy, so much so, I could shut down into a nano second of sleep every few minutes when trying to sit and work at an office desk after lunch. When you hear those health adverts telling you to see your GP if you bowel movements aren’t normal. NORMAL! What’s that? I’ve suffered years of depression, rages at the slightest thing, feel like I have the hangover from hell if I eat sandwiches, bloating, joint pains, headaches. I could probably go on.

    I decided finally, rather than just avoid bread, I would go totally gluten free. I’m enjoying finding a new style of cooking. After 2 months I already have more energy and control over my volatile temper. Aches have improved. The best thing, after years of suffering with Piles, they just healed up in a couple of weeks and I know what is normal now when I go to the loo. Another strange thing, after years of paper thin nails, covered in those white marks, I now have strong, pink nails. My depression is lifting and now retired, I’ve stopped needing my afternoon nap. It would have been good to have a diagnosis and some help but I am looking to a brighter future.

  • Kandi December 16, 2015 at 10:12 pm

    Thank you so much for this article. Me and my sister both have severe celiac. We are always asking if there’s going to be any food at a function as neither of us can be around or touch anything with gluten in. It is so hard, but it’s definetly worth it. I found out I had it about a year ago while i was on an LDS mission in Scotland/Ireland. A lot of the symptoms that I have experenced for over 10 years are finally gone. I went to many doctors and they just put me on medicine and told me it was chronic. The symptoms got worse when i was on my mission and my sister finally told me to go gluten free (i was already dairy free). Within a week i drastically improved and was able to do other things besides be in bed all day. 🙂 Again thank you so much for this article, it totally summed up my thoughts.

  • Helen December 18, 2015 at 11:14 pm

    I am shocked, indeed. I have been diagnosed with celiac disease and have been told to eat gluten-free. Just that! I never imagined that disgusting behavior is caused by the celiac. Thank for the article and the encouragement.

  • Penny December 22, 2015 at 3:32 pm

    Thank you for writing this! I am in my second year of my Celiac diagnosis. It amazes me the family members that still don’t get it. There are family members that will grab a biscuit then pass you a bowl and ask if you want some. I can’t. I am that sensitive. Any contact or cross-contamination sets me in a downward spiral of agony. I often bring my own food to gatherings, and I feel like an oddball at all eating occasions. I often don’t attend wedding/baby showers because of others need for me to eat. I get weary of trying to explain that the fruit tray can make me sick if the fruit came into contact with a gluten surface or utensil. Thanks for letting me know I am not alone.

  • Kate Love December 29, 2015 at 9:43 pm

    Thank you for sharing this post again. It’s timely for me because my partner and I were recently invited to a dinner / game night and the hostess looked me directly in the eyes and said: “The dinner isn’t gluten free.”


    At first I considered bringing my own food. After giving it careful thought I decided that I would not go where I was purposely excluded in such an unkind way. My partner came to the same conclusion. This was distressing for us both – these were people we rarely see and he has known since high school

  • Jodi @ The Average RD December 30, 2015 at 7:08 pm

    Thank you for this post. I, too, am a registered dietitian who has recently been diagnosed with celiac. I am so far shocked at the poor healthcare I have received and all the research that I have been left to do on my own. It is very unsettling. If you have any recommendations for books or continuing education opportunities in this area I would love to hear about them! Thanks:)

  • El Rose December 31, 2015 at 5:39 pm

    It’s good to read this. I’ve booked an appointment with my doctor where I’m going to ask to be tested.
    I have suffered from headaches for years, my stomach has been doing cartwheels for at least 2, I feel tired all of the time and my eyesight fluctuates. I had laser eye surgery a few years ago and have been so scared that my eyes were going back to the way they were that I never stopped to think that it could be to do with my diet, this is the first thing I’ve read to lead me to wonder.
    I get angry sometimes and I don’t know why, everything annoys me, I find it so hard to calm down and it’s nothing to do with that time of the month. Another thing I never considered to be health related.
    I recently started to only eat one meal a day because eating makes me feel so unwell, I’m embarrassed by how long I spend in the bathroom afterwards, and on a recent holiday had to share a bathroom with my brother and his girlfriend… super awkward.

    Thank you for your article, it means a lot to me. I don’t know if I am coeliac but I know now that the symptoms are not normal and I should at least be tested. I never considered eyesight or angry as a symptom, but it would explain so so much.

  • Lorieb January 1, 2016 at 8:17 pm

    all of these comments are interesting to me. It took me about 30 years to figure out my allergies. I never did get a biopsy done, but do know they can be false negative as someone pointed out. Check out my blog posts about my process…

  • Tammy Merchant January 15, 2016 at 9:55 am

    Thank you for your “to-the-point” post. My husband and I rarely go out to eat for these reasons. I went for 30 years misdiagnosed. I went through a liver transplant and many years of illness and misdiagnosis before celiac was discovered. After my diagnosis, had to have a kidney transplant, as well. No, I know not all Celiac victims have to have transplants, my body had just suffered from the affects of eating “poisonous” foods for so long, that was the outcome. I told my mother for all those years, “I feel like I have poison running through my body and I can’t figure out why’. I did, it was the food I was eating, three times a day!
    Thank you again for sharing your viewpoint. It is a shared one, trust me. I don’t care for people joking about gluten free. I don’t like people “going” gluten free as a fad. Trust me if we could eat the good stuff, we would!

  • Kristin January 22, 2016 at 10:37 pm

    Thank you for this beautiful post. I was diagnosed yesterday and I am letting everything settle in and it is nice to have a name for what is causing my problems. I honestly thought I was CRAZY! Love your honesty.

  • Amanda February 17, 2016 at 5:47 am

    Yes, thank you for this post! Two of my sons and I were all diagnosed in the last couple months. It is scary moving into this new way of life, where every waking moment I am worried about protecting my sons and myself. Thank you for sharing your story.

  • Holly February 18, 2016 at 5:04 pm

    Thank you so much for sharing! I was diagnosed with Celiac disease in 2009 along with my son who was 2 at the time. I CAN NOT stress enough how important it is to keep pushing if a doctor refuses to test you!! I was in the hospital for 2 years, staying 4 months at a time. My son was 4 months old when I went in and I missed so much of those firsts in his life because of this disease. My case was severe and I was 21 at the time. They found 17 lesions on my brain and spinal cord from severe B-12 deficiency. I was paralyzed from the waist down. I lost all control of of my bladder. I had brain surgery and a partial lung removal because the doctors couldn’t figure out what was wrong! They put me through chemotherapy and 23 medicines a day and NOTHING got better. One nurse told me “be the squeaky wheel. You can’t ignore the squeaky wheel on your shopping cart… keep at them until they listen!” I was receiving my 9th spinal tap when I asked to be tested for Celiac and the doctor told me “it’s too rare, you don’t have Celiac”. Once released from the hospital and entering a rehab facility for a second time to learn to live in a wheelchair, a doctor agreed to test me. We did saliva sample, blood test, and stool sample. Wanna take a guess what I got diagnosed with? Yup, that “too rare disease”! Within a week of taking B-12 injections I stood out of a wheelchair for the first time in 2 years! It’s 7 years later and I avoid gluten, am off ALL chemo and medicines, and I CAN WALK!!!! I use a walker but I have my life back! Is it easy? No, but I have an 8 year old to protect now that we know he received a celiac gene from me and a gluten intolerant gene from his father. I want to make sure no one goes through the horror that I did because of something that “is too rare to test for”. BE THE SQUEAKY WHEEL AND KEEP PUSHING ON!! It is possible to get better!

  • Sasha Peggs March 26, 2016 at 9:44 am

    My daughter just had her fifth birthday and cannot eat gluten or dairy and some other things. No she hasn’t had a blood test or biopsy. It may be the only accurate way to tell but she vomits every single time she has something by accident that she shouldn’t. It would not be possible in my eyes to put her onto a diet containing gluten for 6 weeks in order to have a biopsy and get a diagnosis. I don’t care if she has an official diagnosis or not. She would be so ill, she would miss school, commonly children with undiagnosed coeliac disease become anaemic, I would be up all night clearing up sick, she would have diarrhoea, she would absorb very little nutrients from her food. So I’m not bothered about diagnosis I’m just happy she’s healthy, happy and super clever.

  • Justina March 30, 2016 at 10:44 am

    Hi, I think gluten works in so many different ways from hearing, when I was like 14 or 15,the doctors started treating me for asthma, so been treated for like 5 yrs, then one day I went to this chiropractic and she’s like you need to stop eating everything that has flour in it, cuz my stomach was pounding so hard, so I did that then one day I went on Facebook and posted “what can u eat if u can’t anything with flour in it” so then one girl contacted me, and from then on I searched and searched for gluten-free recipes so I ate everything gluten free I did a clean eating term for 8 months I’m German so as u kno we bake everything our selfs and cook so it was very difficult trying to figure it out and all the tasted some I just couldn’t do so yea by the way I did the clean eating and then also an aloe Vera juice cranberry flavor 4oz in the morning and night for 8 months, then I started eating our regular bread bcuz bread was the thing that turned out the worst from gluten free recipe so I was hungry for the regular bread and did eat it, then i noticed it didn’t bother me anything so it’s been since October 2015 that i’ve been able to eat regular again, so what I kno what has helped me is the cleaning eating I did and then the aloe Vera juice u can only get it at a sprouts farmers market it’s almost like the one they have in Walmart but much less sodium so I just did this from sprouts or natural Grocers it also has healed some of the people’s heart burn, and I’ve also been treated for acid reflux.. Thanks.!!,

  • Amelia April 13, 2016 at 2:32 pm

    Great post! I really appreciate you mentioning that we should not tell newly diagnosed patients that the GF diet is easy. I’m an RD with celiac and am guilty of doing this. I do it not to minimize the problem but because I want patients to feel empowered instead of scared. However, I agree that living safely with celiac is not easy. It’s stressful and tricky, as you describe. Just wanted to drop a note and tell you how much I appreciate hearing your voice on this — and that I will definitely think twice before telling a patient that a sticking to a gluten free diet can be easier than they may think.

    Best to you!

  • Grace April 18, 2016 at 1:27 pm

    I just want to say thank you. I’ve never related to anything so much in my entire life. I’m fourteen years old and I have celiac disease, it took doctors over 9 years to figure out what I was sick with. When I was about 6 years old, still unaware of what gluten even was, doctors told me I was dying and needed to change something in my diet fast. Almost all of the doctors I saw told me the same thing – “eat more”. That was not what I needed to hear. One doctor actually said that more McDonalds was the cure to my extreme malnourishment. To everyones surprise, it was a chiropractor that discovered my illness. He studied natural medicine and thank goodness for him because without that diagnosis, I would have died.
    I have many of the same symptoms you do, they involve mood swings, extreme stabbing pains in my stomach, back pains, and brain fog. The physical symptoms seem to last about a week to two weeks each time I get hit with gluten (more often then not, it’s from something I ordered off of a “gluten free” menu.) But the mental pain and anger never go away. As you said, this is not a fad. This is not easy. This is a life changing illness that takes a toll on every part of a person. So once again, thank you for speaking the truth about celiac disease.

  • Mache April 23, 2016 at 3:32 pm

    Thank you for writing this post. My 8 year old has celiac. we already new she reacted to gluten so we have been off gluten for years so unfortunately we can’t test the blood work. And we visited a horrible pediatric gastroenterologist that scared my daughter about the endoscopy. I wish I never went to him. And I wish I stopped his mean and loud and horrible explanation. But I didn’t. My child has been in pain for 8 months now. Lots of doctors and blood work. She is tuff. Doesn’t even flinch but we all got weary. We finally know that she has celiac and we will do the endoscopy biopsy soon. But for now there is a mix of thankfulness that we know what it is and how to help her but there is also this sad part were I know it will be hard. You said there is a community of celiac out there can you direct me to some? Thank you again

  • Melissa April 23, 2016 at 6:11 pm

    Thank you for this article and for so many supportive people out there. I have so many questions and I don’t even know where to begin. I will first start by saying that I have had coughing fits for several hours after I eat. I never had any idea why this was happening and it started to get worse over the past year. Instead of just a cough it would also be throat clearing and mucus. I also have seasonal allergies which are pretty bad. I went to the doctor to search for some answers and was told I should consider getting AllergiMed testing. They would check for seasonal allergies which I already knew I had and food allergies as well. I was told my back lit up like a Christmas tree and that I had an off the charts allergic reaction to wheat and oats. They did not give me any information on what to avoid except just don’t eat wheat or oats. I found that unacceptable because I know that gluten is in so many things. So I decided to go gluten-free. After about three months of being gluten-free my coughing stopped completely. I felt so much better and even lost quite a bit of weight. I decided to go to an allergist because I wanted to look into allergy shots for my seasonal allergies. When I showed them that I had the skin prick testing done at my GP, they told me they would like to redo it in search of false negatives or false positives. So I went in a couple of months later after being off of gluten for 2 to 3 months. They did the skin prick test on my back and told me seasonal allergies were very bad, but zero on the food allergies. I didn’t understand why one would come out so high and one would come out nonexistent. The doctor told me that it could’ve been a false positive or maybe I have celiac. I almost felt like I needed a tiebreaker test. I was so confused. I am so confused. So he told me he would do a blood test for the food allergies and also test me for celiac because he thought that could be a possibility as well. I also am hypothyroid within the past year and have gained weight in the past year as well. He told me to eat gluten for three days and then take the blood test because I had to have some gluten in my body for the test to register anything. I searched online because I thought three days couldn’t possibly be enough, could it? So I am on my second week of eating gluten and I just now started to get the coughing and throat clearing again. It is not nearly as bad as it was, but it’s starting to slowly come back. I also have that extreme brain fog and fatigue. I don’t feel as well as I did going gluten-free. So my question to anyone out there who can help me is – do I need to wait for six weeks? That seems to be what I am seeing online for this test. I don’t know where the doctor got three days from. Maybe that is correct, I just don’t know. He did tell me that the test is notorious for being unreliable unless it is an extreme high or an extreme low. He is doing a lot of immunoglobulin tests, the celiac test and also food allergy test. I don’t know if they will give me the answers I need. I do know that I feel a whole lot better off of gluten either way. Any way it turns out, I will stick to gluten-free. The doctor told me that since there is no food allergy, that it could be either celiac or a gluten intolerance. I just want to know some answers so I can go on with my life. Does anybody have any suggestions out there for me? I can’t tell you how much I would appreciate it. Thank you so much! Sorry for the long post.

  • Debbie April 26, 2016 at 8:33 am

    If you found you’re gluten intolerant… get yourself tested BEFORE you go 100% gluten free. Because you will need to eat gluten containing foods for the testing and will feel miserable if you’re already gluten free.

    • Melissa April 26, 2016 at 9:42 pm

      Thank you for the response! I already went gluten free. So now I had to go back on it for the celiac test. I just do t know how long to be on gluten before taking the blood test. Any suggestions? Thank you so much!

      • Alysa April 26, 2016 at 10:02 pm

        Hey Melissa! I just asked the Celiac Disease Center for the current recommendations. I’ll get back to you when they get back to me!

        • Melissa April 28, 2016 at 9:04 pm

          Thank you, Alysa!!! I so appreciate it!

          • Alysa April 30, 2016 at 1:05 pm

            Here’s what I found — If you are on a gluten-free diet, CDF’s medical experts recommend a “Gluten Challenge” – daily consumption of gluten equivalent to at least 4 slices of bread for one to three months followed by an endoscopic biopsy with no serology testing.
            Read more at https://celiac.org/celiac-disease/diagnosing-celiac-disease/#33lYJAu1xpKmF0OA.99

  • Erika April 28, 2016 at 6:30 am

    This is great information. I have recently learned I have a severe allergy to gluten (among other things) and tested positive for celiac in a blood test. Next step is a biopsy. I’m curious how many people really don’t have typical digestive issues, but other symptoms you don’t hear as much about.
    Such as depression, headaches, fatigue. Those are my symptoms-are they uncommon or have I just been misinformed?

  • Noera April 29, 2016 at 1:17 pm

    Wow i can imagine that it is not always easy. I myself also try to eat gluten free, which is also not always easy in social situations.

  • Pan May 3, 2016 at 11:35 am

    I have been gluten free for now a year and a half. What I find is people do not understand what gluten is an why I have to check labels on everything I eat because gluten has many names. I have an allergy to gluten and since being gluten free I have not been sick like I used to be. I can totally understand the frustrations when you tell someone especially at work where we have food all of the time. Well don’t let others get you down what really counts is that you feel better!!

  • Darrah Casperson May 8, 2016 at 4:44 pm

    Thank you so much for your comments. You are a beautiful woman who is wise and sensitive enough to let the world know how you feel and how it feels to have this problem. I am the mom of a wonderful daughter that has, what I call “full blown” Celiac disease. I am trying hard to learn everything I can about what she needs and what she is going through. Just read “Wheat Belly” and that told me a lot! Does anyone know the best places to find groups, such as on Facebook’s “The Gluten Free Life” or websites that are truly in touch with people that have Celiac disease. Thanks so much and don’t give up!!

  • Dana May 16, 2016 at 4:16 pm

    Thank you! I have dermatitis herpetiformis a “form” of celiac disease. I’m “lucky” as I don’t have the intestinal issues, but I do get the “suicide itch” and I’m miserable. I’m paranoid and only a few people get it, not my family, my friends. I don’t eat out at all! I have to prepare everything at home in my GF home. I cannot eat anything that was cooked in any item that once saw gluten. I also have to be careful of other items in relation to “DH”……iodine, iodide, NSAIDS, fish, any cross reactivity, rice, “GF” processed food items, etc. I’m terrified if someone shakes my hand or asks me to borrow a pen. I am a paranoid mess as if I get any speck of gluten, I break out in a rash that itches that I want to burn my skin off and it lasts for 6-8 weeks. I appreciate your post, thank you!

  • Chantel Klassen May 17, 2016 at 1:48 pm

    Ooh, this is a great article! My husband has celiac and has a lot of the same symptoms and frustrations you have. So often it seems like because his reactions aren’t immediate (it usually takes a few days before it affects him) and not visibly obvious then people don’t really pay much attention/believe him/take the time to be careful, it’s very hard for him to go out to eat knowing he will probably be sick for a week or two afterwards. I’ll definitely be sharing this post with some people!

  • Elise June 2, 2016 at 3:35 am

    Thankyou for writing this article! I was diagnosed celiac 4 years ago and I found the first 12-18 months so incredibly hard, that no one knew the anxiety of simple things like eating out, because so many social occasions revolve around food. I found myself many times crying in the middle of restaurants because I had one choice (sometimes none) on an entire menu, and people would still tell me I should be grateful and it could be worse. It took a long time and I was very resistant at first, but I am as strict as possible now with my diet, but when I get glutened it is so much worse than before. It was such a major life change for me as I had lived 18 years eating normally, but I’m adjusting and have a supportive partner and family to help, and I know theres always someone out there who understands!

  • Ellie June 7, 2016 at 12:03 am

    I have coeliac disease. I was diagnosed at the age of 9. I used to always get sore tummys and didn’t know why. I have a blog about gluten free living but haven’t posted anything yet. Feel free to have a little wonder around if you would like.

  • Lynn June 16, 2016 at 8:17 am

    For those who are still really sick after eating gluten free, PLEASE read this!!!


    My children and I can NOT eat certified gluten free oats, vanilla extract unless it is made from a non-alcoholic source, even though most websites will say it’s gluten free and safe… Alcohol usually comes from barley and barley co tins gluten…

    The list goes on. Recently, I am getting the gluten rash from corn, which can cause priblems in extremely sensitive individuals.

    NEVER give up!!!

    Also Diatamaceous Earth, also called silica heals the gut lining. I buy food grade in bulk from Azure Standard and add a tablespoon to smoothies and add it to cooking and baking whenever I can.

    Vitamins and minerals are ESSENTIAL to healing, BUT they have to be in balance, readily absorbed and safe. Shaklee is the BEST I can find after YEARS and YEARS of scrutinizing labels and comparing ingredients.

    I still compare ingredients when new products come out. Shaklee still wins EVERY time!!!

    I can sell them to you at cost. I am a Distributor, but haven’t ever worked the business.

    Lynn, [email protected], Lynn Winkler on Facebook.

    • Andrea March 1, 2017 at 10:32 am

      Lynn- I’m the same way, I have a severe reaction to corn and I can’t eat any grain except rice. White vinegar and grain alcohol also makes me react, though most people try to tell you it’s safe. It turns out there is a small amount of research so far that validates these reactions, but most people aren’t aware of them! So many folks with celiac would feel so much better if the word got out!

  • Penny June 23, 2016 at 8:11 am

    Thank you so much for this post. It really hits home with me. I have been diagnosed for 4 years, and it never gets easier. I went to Burger King (because it was the only restaurant around) with my family. I ordered ice cream, and the workers never brought me the ice cream, nor did they tell me the machine broke. So, there I sat watching my family eat while my stomach growled and I had to leave the table, because it was so hard to watch them eat. I feel like a total odd ball. I would love to feel somewhat normal again.

  • Lori Nedescu June 28, 2016 at 5:18 pm

    Great post! Thanks for the honest feelings…
    I completely agree with your clinical and professional stance that EVERYONE SHOULD GET TESTED!! Otherwise, it does end up being just a fad… you need proof, the medical community needs to be able to accurately collect data and the food industry needs to take it seriously….
    However, being a dietitian myself… I’m really sad to here you didn’t find it easier… As someone who should be familiar with the foods, labels, protocol… it should be easier! I have celiac. I am a dietitian. I am so thankful to be in the profession I am bc I do understand food more than the average person and that gives me a huge edge up on keeping my ‘diseased’ body in top form. I find being educated and having knowledge helps immensely. I can take the emotion out of it. Of course there are times here and there I get cranky bc I can’t eat the fried dough at a carnival or have to pass on pie during the holidays… but as a dietitian, I know what is best and healthy for me and for others with the disease… I hope you can work on counseling patients with celiac in improving and knowing that ‘its just pie (bread/fried chicken/whatever…) because in the end, it is just food and there are soooooo many worse diseases out there. I feel so lucky to have celiac and not cancer or ms or als or whatever else. It is just food and naturally GF food is wonderfully nourishing to everyones body.

  • Bernie Hall July 23, 2016 at 4:35 am

    It isnt easy being coeliac because it manifests in different ways and varying symptoms for us. I was lucky to have been diagnosed in St. Bartholomew’s Hospital in Lindon by a wonderful Gastroenterologist and had been very run down before being diagnosed, weight loss down to 7 stone 5 lbs, food eaten going through my digestive system rapidly, steatorrhoea, easily bruising, stomach pain, feeling awful all the time and wondering what was wrong with me and always suspecting the worst. Such a relief to know that a change in diet could sort out a lot of my oroblems. Now living in West of Ireland and managing the diet and we have a great group that support each other and give tips about new gf products and where to get them. However when i overdo it on eating out or chancing something, i soon get back on track as even a small amount of gluten can have a nasty effect and same with too much partying! I get a walk in most days, a half hour or so. This helps with a bad mood too and its very important for us to keep fit. And it could be far worse than discovering we are coeliac, i consider myself very fortunate to have been diagnosed as a coeliac and was advised at the start to focus on what i can eat, not what i cant eat which gives a more positive outlook on being coeliac. I dont eat gf porridge nor corn but use cornflour at times for sauces. I cannot eat eggs as i discovered when i was on the diet for a year or so that they give me a nasty pain down the middle of my abdomen!

  • Julie January 1, 2017 at 8:22 pm

    I’m 16. I was diagnosed with celiac when i was 10, a year later, I was diagnosed with hypothyroidism. Because of my celiac I have suffered from depression. I am the only on in my family with it, that’s something I still don’t understand being that it is a hereditary disorder, so sometimes I feel alone. I don’t know anyone with celiac personally. in a few days it will be my 6 year anniversary with Celiac. like the article said, I am glad that I know what makes me feel this way and I actually am proud of it in a way. Reading this made me cry, I really didnt know that everyone with celiac feels the way i do. I’m glad I know I’m not as alone as I feel.

  • Mette April 19, 2017 at 7:36 pm

    Thank you SO much for this amazing, honest and brutal description of what it’s like to live with Celiac disease. I am so thankful that I KNOW what is wrong with me (didn’t get diagnosed until I was 37 but most likely developed when I was 18 months and in a car accident – something about how my tooth enamel has formed (or rather has not), my osteoporosis and hight (or lack there of) but knowing (and living gluten free) is only half the battle, the other half is educating the world around you.