What I want you to know about Celiac Disease

by inspiredrd on May 24, 2013

This is a very raw post 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 that 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 a 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 that 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 that 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 health care 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, and most of them aren’t doing it responsibly.  Then we get sick.

I want you to know that 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 and have to scrub my hands.  Every time someone asks if I want to meet for lunch.

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 that there is an incredible celiac community out there 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.

Celiac Awareness Month

 

Do you have celiac disease?  What do you wish people knew about it?

  • http://supportjohnhope.blogspot.com Aurora

    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

      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 :))

      • http://www.facebook.com/4healthandmore Teri

        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.

    • Alison

      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

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

    • kim

      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

        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

          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!

        • http://Www.recipesbychristine.blogspot.com Christine Fontaine

          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!

    • Laura

      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.

  • http://www.breakingupwithcaptaincrunch.com Alissa @ Breaking Up with Captain Crunch

    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!

  • http://www.katilda.com katilda

    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

      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”.

      • http://www.katilda.com katilda

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

        • chris

          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.

      • http://Www.ohgalinsocal.wordpress.com Stephanie

        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

      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

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

      • Stacey

        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.

  • Deana

    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

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

    • Sam

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

  • melissa

    well said ;)

  • Tonggu Momma

    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

      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

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

  • Erica

    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

      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

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

  • http://www.ayearwithmomanddad.com JulieK

    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

    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

    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

    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

    (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

      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

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

  • Jennifer

    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

    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

      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

        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

        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

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

  • Lisa

    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)

    • http://www.katilda.com katilda

      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…”

    • ~mel

      @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! :)

  • http://www.askleahrenee.com Leah Renee

    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

    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

      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…

  • http://www.kompromisedkitchen.com Kara

    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!

  • http://www.preciousbloom.com Elizabeth Hare

    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

    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

      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

      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

    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.

  • http://Www.thepatientceliac.com Jess

    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!
    Jess

  • Jennifer

    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

    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

    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

    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

    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

      I’m glad you said “ex.” What a jerk! :-)

  • Sarah

    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.

  • http://feistyirishwench.blogspot.com FeistyIrishWench

    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

    THANK YOU.

  • IrishHeart

    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

      A comment from IrishHeart! My day is made :) Thank you!

  • Anne

    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

      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

    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.

  • http://winging-it.me Carma

    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.

    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

      Thank you for the link!

  • Katrina

    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

    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

  • http://glutenfreeeasily.com Shirley @ gfe & All Gluten-Free Desserts

    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.

    Shirley

  • Kate

    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

    THANK YOU SO MUCH FOR SHARING THIS POST!! THIS IS ME. I FEEL THE SAME WAY BUT I AM JUST NOT ABLE TO SAY IT TO ANYONE. IT IS SO HARD TO MAKE PEOPLE UNDERSTAND WITHOUT SEEMING LIKE I’M SAYING “POOR ME”……I’m NOT SAYING “POOR ME” AND I DON’T WANT ANYONE TO FEEL SORRY FOR ME….I JUST WANT THEM TO UNDERSTAND. I HAVE MANY OF THE SAME SYMPTOMS AND AM EXTREMELY SENSITIVE TO GLUTEN (I AM CELIAC, NOT GLUTEN JUST GLUTEN SENSITIVE). MANY TIMES I CANNOT EVEN GO INTO A RESTAURANT WITHOUT GETTING SICK….JUST THE GLUTEN IN THE AIR MAKES ME SICK…… AND SO I DEFINITELY DO UNDERSTAND THE AUTHOR OF THIS POST. THANK YOU FOR SAYING ALL THE THINGS THAT I HAVE BEEN WANTING TO SAY!!!

  • http://hoosierpaleogourmand.blogspot.com/ Shannon Davis-George

    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

      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.

  • http://www.injohnnaskitchen.com Johnna

    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.

  • http://www.WebHealthWriter.com Michelle Traub

    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

    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

    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 :)

  • http://www.bluevalleymeats.com Clarice Swanson

    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:
    http://bluevalleymeats.com/uploads/Gluten-Free_Publication.pdf

  • Kay

    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

    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.

    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’

  • Pingback: Good Post about Gluten Reactions | Stephanie Bird • Professional Portfolio

  • joyce

    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

    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

      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

    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. :)

  • http://www.southerngirleatsclean.com Alisa Rhinehart

    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

    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

    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.

  • http://toxicity2purity.wordpress.com Margie

    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

      I feel the same

  • Stacy Shapiro

    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

  • http://torontoceliac.org Joni

    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

    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

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

  • http://sheshesglutenfree.com Sheila Hunt

    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

    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

      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

      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

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

  • Jasmine

    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

      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

    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

    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

    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

    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

    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

    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

    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

      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

      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

      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

    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

    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

    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

    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

    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

    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

      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.

  • Diana

    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

    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

    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

    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

    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

    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.

  • http:inthemoodfornoodles@gmail.com K

    Perfectly said!

  • Stacey

    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

    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

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

  • Lori

    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

    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

    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 beckyraeh@gmail.com
    Thanks for the ear!

  • Luisa

    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

    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.

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  • Jimmy Lee

    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

    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

    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)

  • Guest

    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.

  • Whitney Brundage

    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.

  • Live Life Celiac

    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

    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

      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.

  • Meagan

    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.

    • http://inspiredrd.com InspiredRD

      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

    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

    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!

    • http://inspiredrd.com InspiredRD

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

  • Amanda

    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

    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

    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

    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

    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!

    • http://inspiredrd.com InspiredRD

      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

    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!

    • http://inspiredrd.com InspiredRD

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

  • AAK

    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

    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

    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

    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.

    • http://inspiredrd.com InspiredRD

      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

    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

    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.

    • http://inspiredrd.com InspiredRD

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

  • Janie

    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.

    • http://inspiredrd.com InspiredRD

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

  • Pam

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

  • catina

    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

    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

      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

    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

    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!

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  • Caroline

    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

    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

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

  • Angie Vayda

    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

    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

    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.

    • http://inspiredrd.com InspiredRD

      Thank you Andrea. It gets better, I promise :)

  • Jessica Pero

    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?

    • http://inspiredrd.com InspiredRD

      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

    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.

    • http://inspiredrd.com InspiredRD

      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

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

    • http://inspiredrd.com InspiredRD

      Thanks June, I’m glad I could help.

  • Trina

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

    • http://inspiredrd.com InspiredRD

      As Gluten Dude would say, keep fighting the good fight :)

  • Laura

    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

    • http://inspiredrd.com InspiredRD

      Yes. Ugh.

  • Hope Romine

    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

    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

    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

    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.

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    Thank you!!!

  • Guest

    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

    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

    couldnt of said it better myself :-) thank you, you are defiently not alone.

  • Madison

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

    • http://inspiredrd.com InspiredRD

      Thank you Madison :)

  • Letitia Baker

    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!

    • http://inspiredrd.com InspiredRD

      Oh wow! Good to know, thanks!

  • Carrie

    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.

    • http://inspiredrd.com InspiredRD

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

  • Amby

    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

    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)

    Simon.

  • Cathy

    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

    THANK YOU!!!!!

  • Alecia

    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!

  • http://www.just1step.com Kara @ Just1Step

    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.

  • http://Tifftries.com Tiffany W

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

  • neisha

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

  • Sarah Olencewicz

    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

    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

    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

    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.

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