What celiac disease is really like

I’m mad.

And sad.

And frustrated.

And ticked off.

Mad at myself.

Mad at this disease.

Mad at those who call my disease “trendy”.

Two weeks ago, I was “glutened” in a restaurant.  I went through all the right steps, asked all the right questions, and still got sick.  Halfway through my meal, I felt the tingling in my brain telling me gluten had entered my system.  Crap.

I decided to write down my symptoms as they happened so I could give you a better idea of what I go through when that happens.  Not all celiacs react in the same way.  In fact, most of us are very different.  But for me, here’s how it goes down.

Immediate reaction: Tingling brain, pinching sensation in my brain, chills, trouble focusing my eyes, trouble focusing my thoughts, trouble getting complete sentences out.

Lingering symptoms (up to 2 weeks) Headaches (constant the first 2 days, then right after meals), swollen fingers, short temper, burning scalp, hot flashes, upset stomach, fatigue.

Today I was finally starting to feel some relief.  And then…

I freaking glutened myself.  Me, the over-careful, million questions for the restaurant manager, bring-my-own-food girl glutened by my own carelessness.  Glutened with a handful of popcorn.  Popcorn that Trader Joe’s proudly touts as “g+” meaning “no gluten ingredients”.  It’s not Trader Joe’s fault.  I love Trader Joe’s.  It was my fault for not turning the package over as I always do to search for those magic words, “processed in a facility with wheat”.

I don’t know why I didn’t look closely at this package when I’ve inspected every singe bit of food over the past year with a microscope.  Maybe I was tired of being so careful.  Maybe I just wanted to feel normal.  I don’t know.  But I do know that a handful of that popcorn sent me right back into feeling like hell.

My brain started tingling, and I couldn’t get rid of the headache.  I couldn’t figure out how to drive through a construction zone.  My brain wasn’t quite right.  I got the chills.  I was scared to drive home with my little Leila in the car.

I came in the house and started wondering what was going on with me.  Why am I reacting this way?  I didn’t eat anything weird, just my leftover frittata and a banana.  What was going on?  Then it hit me, the popcorn.  I ran to the pantry and turned the bag over.  My heart sank.  I glutened myself.

No waiter to blame, no food company to get mad at, it was me.  All me.

I sat on the bed with tears streaming down my face.

Why did I think this was going to be easy, this celiac living?  How could I have celebrated my diagnosis?

I’ll tell you why.  Because they said it would be easy.  “Just cut out the gluten, and you’ll be fine.”  “It’s not a big deal, there are thousands of gluten-free products these days.”  “You’re lucky you were diagnosed now and not 10 years ago!”

These weren’t celiac patients telling me these things.  These were medical professionals.  Doctors, nurses, dietitians.  All, apparently without the disease themselves.

The truth is, celiac disease is hard.  It is SO hard.  I’m a freaking dietitian and I can’t even handle it.

A friend asked me last week if I think I will ever have peace with my disease.  I told her I hope so, but I’m not sure what that looks like.  This is something I have to think about every time I put food in my mouth, lotion on my hands, chapstick on my lips.

So I’m going to let myself have a pity party tonight, especially knowing I have a week of headaches and hot flashes to look forward to.  But I refuse to let this all be negative.  My prayer is that by sharing my story, I can open your eyes to what it’s really like to have celiac disease.  If it’s this hard for me, a nutrition professional, think of how hard it is for those who’ve never even heard of this condition.

I hope my story helps you understand what a friend or family member goes through.  Though we all suffer differently with celiac disease, we all suffer.

Do you know someone with celiac disease?  If you have celiac, have you found peace with the disease?  Have you ever glutened yourself?  What are your symptoms when it happens?

  • Kia October 25, 2012 at 7:06 pm

    I do not have celiac but a sugar cane allergy with reactions from headache/tummy bloat to throat closure and the full anaphylaxis b.s. It sucks. It really sucks especially when you are being careful and some little things goes wrong. Hugs. Hope the symptoms subside soon!

  • Shannon October 25, 2012 at 7:08 pm

    Yes, I have celiac. Yes, I have glutened myself (seasonings that had no mention but the only possible cause). So now I only season my food with non mixed seasoning (pepper, salt, fresh lemon). Will I find peace with it? Probably not, there are times I (we) went hungry when there isn’t anything safe to eat.

    As for my symptoms I have a different order. My body tries to purge the offending food and all contents of my stomach. Then comes the fatigue which can last from a day to a week. A day or two after the glutening my brain doesn’t function like it should. To think once upon a time I thought that was mommy brain. After diagnosis, the non functioning brain happened less and less. I will still become fatigued without any other symptoms or being glutened. It sucks, I hate it. And I am here for you.

    • Louise January 28, 2016 at 4:33 pm

      Hi I was dignosed with celiac a few years ago sadly I can’t cope with the gluten free food so I just eat and suffer I get my blood checked every 3/4 months and the result was so high I don’t no what to do x

  • Lauren October 25, 2012 at 7:15 pm

    Thank you for sharing this! You articulated the (completely understandable) frustration so well. I can’t imagine having to go through your particular circumstance, but I have many dietary restrictions and completely identify with the feelings you shared here. Thanks for also shedding light on celiac disease – certainly helped me understand what some of my friends go through – sometimes it’s easy to think that all of the well-labeled food/menus lead to an easy road, but that’s obviously not the case.

  • Lindsay @ The Lean Green Bean October 25, 2012 at 7:44 pm

    oh alysa…i’m so sorry you’re going through this. i can’t even imagine how hard it is. i wish i could come give you a big hug. please let me know if there’s anything i can ever do to help you!

  • Joanna @way2gomom October 25, 2012 at 8:05 pm

    How frustrating it must feel for you to gluten yourself after all those precautions! I’m so sorry you’re going through this, and I hope you’re feeling better soon. HUGS!

  • Brittany @ LessBritt MoreLife October 25, 2012 at 8:47 pm

    Alysa.. I’m so sorry! I wish there was something I could do to help you! I have a few friends who have Celiac Disease, and know from their lives and stories how hard having Celiac can be! You’ll be in my prayers always!

  • Corrina October 25, 2012 at 8:57 pm

    I am not celiac (that I know of–haven’t been tested) but I did find through experimentation that gluten causes massive migraine headaches. Headaches I have been dealing with my ENTIRE life. I remember laying down in a dark room in first grade at school due to bad headaches. I just figured it out this summer. The brain tingling thing is such a good description. My “gluten headaches” start at the base of my head and move up. If I have a headache at my temples, I know it’s not from gluten. I still have some headaches. I wonder if it’s from residual gluten in my diet.

    Since this is so new to me, I have a lot of difficult days. Days I’m frustrated with foods my family can eat and I can, foods I prepare for them but can’t eat myself. I am hungry several nights a week because I didn’t eat well. I sometimes consume too much sugar because there are a lot of gluten-free options (ice cream, chocolate chips etc).

    It’s nice to read I’m not the only one with the frustrations and difficulty adjusting.

  • Angel October 25, 2012 at 9:08 pm

    I’m sorry, dear friend. You are definitely experientially learning about His strength in our weakness. I love you and I’m continuing to pray for you.

  • Nancy Guppy October 25, 2012 at 10:38 pm

    Hey, there. It isn’t nice is it? My biggest symptom if I eat “a bit” of wheat is what I call “emptying my head into the back of my throat”. It can go on for days and is very annoying. And the variation between loose stools and almost constipation although no one wants to talk about that. Before I found out about my disease I was having neurological pain and loss in my hands and was not able to write well for a year. Hard as an RD. I never got into the GF bread etc. that is sold as I find it “heavy” and too hard to digest. All whole grains and natural.

  • Regan @ The Professional Palate October 26, 2012 at 3:20 am

    So hard to read, but so important to share. Thanks for making it real for everyone who thinks this is just a trend. Your story sheds much needed light on the reality.

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  • Eating as a Path to Yoga October 26, 2012 at 5:43 am

    I don’t have celiac disease, but what a powerful description of what it is like to endure this diagnosis. Thank you for sharing.

  • Jen Mansfield October 26, 2012 at 2:20 pm

    Loved reading this – I can completely react, and in fact, just wrote something today that I’m sure you can relate to. Not only do we have to be so diligent on our own behalf’s,and for our own protection, but often times we have to do so in spite of criticism from friends and family who think it’s as simple as just “cutting out the food that you’re allergic to”. I too have heard the “Oh you should be fine now – everything is labeled properly”, which we know is not the case. Just because it says GF doesn’t mean it’s actually FREE of gluten – it just means it’s allowed to have trace amounts that our wonderful gov’t has deemed healthy enough to get by with. I hope you feel better soon!

  • anne October 26, 2012 at 2:22 pm

    I certainly identify with your 2 week long pain, but my symptoms are in a little different order and I won’t know the gluten is there until about 6 hours after eating it. Might be a restaurant or at a friend’s house. Either way, everyone was so, so careful and understanding. I do sometimes eat things made “in a facility that processes wheat” but I am very selective about the brand names. Some I trust, and some I have never heard of before so won’t take a chance. I might suggest you consider the possibility of additional dietary issues. I can not eat gluten, corn, soy or most fruits either. I have a fructose malabsorption, diagnosed by a gastroenterologist. The symptoms are different for each one so that helps me know what got me. Celiac disease really messes with our social life. Keep writing about it. That will help others know they are not alone.

  • Tiffany October 26, 2012 at 2:34 pm

    Great post. Learning about celiac disease through a textbook is obviously not what it’s really like to experience daily. Thanks for sharing!

  • Gale October 26, 2012 at 2:52 pm

    Thank you for this article! My daughter and granddaughter are celiacs, so I have seen all of this up close. I feel so bad for them when one of them gets “glutenized”. But they are fighters and handle it very well, especially my 10 year old granddaughter.

    Hang it there and know that you are not alone. But know this…it does get a bit easier as time goes on. My girls were diagnosed five years ago. The diagnosis saved their lives, I’m sure of it!

  • Deb L. October 26, 2012 at 2:53 pm

    Thank you for this post. As a mom of a 2 and 4 year old, I understand the feeling of being aftraid to drive a child home. For me, the symptoms, besides intestinal, are: confusion, brain fog, nerve/muscle/joint pain, hot flashes, and a fatigue that can be overwhelming.

    I thought I was alone in my fear of somehow being with my children and forgetting how to get somewhere or what I’m actually doing. Unfortunately, because I wasn’t diagnosed until after my 1st child (at 34), the lasting effects persist even now that I’m “gluten free.”

    The damage celiac has done to my brain is such that when a neurologist tested my attention span, it had dwindled down to 90 seconds! Thankfully, with the help of medication, I’m able to pay attention, play with my children, and participate in their development.

    Thank you again for sharing. From one mom to another, from one celiac to another, it means so much.

  • Jamie October 26, 2012 at 4:17 pm

    This post hits home on all fronts – first the “symptoms.” I have been saying for years that it is like I am drunk and I have the dents on my car to prove it. The kids have finally decided it is not safe for me to drive when I am under-the-influence of gluten!

    I get the part about it being hard too. It has been a really, really, really hard year for my gluten free teen. She has had 2 – 3 doc appts every week – may be when I get over mourning about it, i will be able to put it down in words. I try hard to be a good role model for her, but if there is one thing I could change . . . .

    I am also slowly but surely learning that it really is more than just about the gluten – even though we are gluten free as you can be and still live a “normal” life, we are sicker more than other people and we just have more issues.

    Blessings for your blog – may be if we keep writing about it someone will actually finally get it!

    From one Gluten Free Mom to Another!

  • Else October 26, 2012 at 7:09 pm

    I too have been suffering all week, thanks to my mother-in-law who swore blindly there was no gluten in the food she cooked but body told me otherwise. The first sign for me is always an intense stomach ache within 30 minutes of gluten entering my body. Feels like I’m being stabbed repeatedly. Best way I’ve found to deal with this is to eat as little as possible for the next 2-5 days (depending on gluten dosage). Just chicken broth and peppermint tea. Within a few days after glutening I get inflammed gums, swollen glands and large painful canker sores, which adds another 2-5 days of not eating. Somewhere in there constipation kicks in too. And I’m moody, anxious, and generally not a nice person to be around. My husband thankfully is a saint – he knows when to give me a hug and when to stay away! Usually takes 6-8 weeks to get back to “normal”.

  • Jillian {Her Split Ends} October 27, 2012 at 7:31 am

    Thank you for writing this. my mom has been gluten free for several years now {not officially celiacs but a gluten intolerance} and i’m beginning to suspect that i might have some similar issues. Reading this and hearing about your experience has been so helpful. Thank you for sharing and keep up the fight!!
    ~ Jillian

  • melissa October 27, 2012 at 8:01 am

    Wow. Your reactions to gluten are terrifying. My Mom has celiac, but compared to your reactions, her’s are nothing. She gets sick to her stomach, feels bloated, and just has an overall feeling of yuck for about 24 – 48 hours. She’s been diagnosed for over 2 years and still is not at peace with the diagnosis. She struggles every single day. It is so hard.

  • Rachel October 27, 2012 at 9:55 am

    Mine starts with a sense of dread and heaviness. It’s like I’ve put on a hooded jacket that weighs 100lbs… brain fog kicks in, and then the pain in my upper arm (usually my right) starts… it radiates down and spreads into my ribs and hip. Brain fog kicks in right as I realize, oh crap, I was glutened!

    A few days of overwhelming depression kicks in, I have to fight myself in order to get out of bed and go to work. I stumble through my days in a fog, and beat myself up for the mistakes. The pain in my limbs usually dissipates after a few days, but I remain sore for weeks. The brain fog lessens, but comes back on and off for up to a week… normally at the most inconvenient times. It’s very embarrassing to step off the elevator at work and not be able to remember which way to turn to get to my desk.

    My most recent exposure came from some mint candies that I didn’t even bother to check. A co-worker offered me a handful, and I just took them… I hate it when it’s my fault!

  • laura October 27, 2012 at 11:44 am

    i feel your frustration.. I am also considered to be an educated celiac.. if that is possible… When I am glutened I have the brain fog, migranes, stomach issues and weight loss. Hot flashes and fever are a bonus! Does anyone else get a fever? I hope you are feeling better

  • Kathleen @ KatsHealthCorner October 27, 2012 at 12:19 pm

    I am so sorry. 🙁 I have a milk allergy, but my reactions to it as postponed (stomach aches are the thing that comes first, and then my face breaks out terribly and and hurts and takes weeks to clear up), so it can get hard to know what happened to spark it. Hugs!

  • Cricket October 27, 2012 at 4:31 pm

    Yes, it is horrible to get “glutened”, I get so tired of reading, and when you order out in a restr. or eat at somebody’s house, you can’t read, you just pray. So many people don’t care either if you get sick so what, its not them, I’ll fix whatever I want when you come visit. Fine, then you won’t be seeing much of me, its definitely NOT WORTH it. One taste can leave a celiac suffering for days. Since being born, but not diagnosed ’til my senior yr (17 yrs. of age) many,many horrible days and not knowing why. Most people don’t care either, so you have something called Celiac, big deal, eat or don’t eat,but of course if you don’t eat at my house or skip certain foods, you will hurt my feelings and you won’t be invited back again. That would be fine w/me, if people don’t care enough about you to ask what you can’t eat and get some knowledge of what it would be like to be a celiac patient, then they are NOT friends. I thank God about everyday now for all the gluten free bakeries that are popping up for us, but Please,Please, be sure you are really baking it w/the correct ingredients, you will never fool a true Celiac patient and they will have many days and nights of suffering until that innocent pc.of food has com-pletely been expelled from the body and left a little more damage. Folks, it ain’t fun!!!!!!!! Respect other people’s medical/physical problems! Thank you.

  • Kandi DeCarlo October 28, 2012 at 8:46 am

    Thank you for the post. I think my son my have a gluten intolerance. For the past 2 years he has had body aches that can’t be explained, depression, tingling in his hands and now at the age of 15 he is experiencing migranes to the point that he can’t focus on anything. I am putting him on a gluten free diet for a week to see if it makes a difference.

    • inspiredrd October 28, 2012 at 10:03 am

      Kandi, I would highly recommend you get him tested for celiac disease BEFORE going gluten-free.

  • Jennifer M October 28, 2012 at 3:42 pm

    So interesting – I found this post right after I posted my rant about being “glutened” . Sorry you are suffering. And can so relate. Hope you are feeling better!

  • Rachel October 28, 2012 at 4:26 pm

    After 3 years, I have found peace about 98% of the time. I was seriously glutened in mid-July this year and then seriously glutened again on Labor Day weekend. We are talking way more than cross contamination and way more gluten I have ingested in 3 years. I am still recovering from the symptoms of gluten inflammation and subsequent nutrient deficiencies. With cross contamination, it generally takes me 2-3 weeks to recover. I am still fighting and finally scheduled an appointment with my doctor to determine what complications have truly occurred with such great exposure. I can’t wait to be back to my “regular self”.

    But I am still generally at peace with it. I’m 30 with a family history or early breast cancer. I went for my first mammogram 2 weeks ago and was called back for an ultrasound. During the time between tests I had time to freak out. If I have cancer at 30, how will it impact my career presently? I haven’t started a family. My fertility will be ruined. Who would let a woman who had cancer so early adopt a child? Will I ever have a family? There was a mass, but thankfully it was interpretted to be a lymph node. I also live with another chronic condition and have been told to expect to have major surgery in my 50s or 60s. I share this not to invite a pity party, but to put Celiac in perspective. Compared to other health conditions, Celiac isn’t that big of a monster. The treatment doesn’t have any physical side effects like a medication.

    Of course the challenge is keeping this perspective while you are in the thick of it. Brain fog. Migraines. Bloating. Irritability. Fatigue. Intestinal cramping. Fine motor and coordination deficits. Skin distress. Constipation. Loose stools. Joint pain. It’s not pretty! It’s very easy to turn our current battles into a great monster and lose perspective. You are never alone and have had the joy of many blessings. Keep your thoughts in the things that bring you joy, then you’ll see those monsters shrink. They will have no place to grow if you keep joy in your heart.

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  • janetha {meals & moves} October 29, 2012 at 1:16 pm

    Wow. I cannot imagine having to live with celiac disease. It’s so time consuming and tedious. I am so sorry 🙁 <3

  • Amber November 6, 2012 at 7:19 am

    Well I am a celiac and have been for 7 years now and find myself reading this story as well as as much as I can on the internet about the disease even though by now i know just about everything there is to know about celiac dissease. I guess its just nice to read and rilate.
    I have glutined myself as of late and waiting threw my symptoms, constant hunger, to no apetite, bloating, sharp abdominal pains and achs, then the exploshion of my undigested food out my rear. on days when i need to get a lot done i try not to eat to avoid pains and the runs to a near by bathroom but the fatige and brain fog will get ya anyways. I really like the part when you didn’t feel safe driving.. sometimes i know i shouldnt be on the road but life dousnt stop cuz your glutined so on we must go. I think the most frusterating thing is i dont even know where i ingested it.. i guess i sometimes get fed up and careless aswell.
    So will I ever have peace with my celiac… sometimes I do and I love being glutin free, gives me an excuse to eat super healthy, the food tastes good when you find the ones you like anyways, I am ok with glutin free! but I am not ok with resteront stress, going to others homes and making them feel weired cuz im not eating what they are offering and no I am not ok with the glutined effects.I use to have kids make fun of me call me dumb and slow nick named albino snail threw my high school caree, no one liked me because I was like talking to a brick wall. I WAS MALNURISHED, tired, pail, in pain. I guess being in north america it makes a simple diet hard because its a popular food product hear, there would be bread crumbs on desks for gods sake but i cant bring in my penutbutter ( though i wouldnt want to its a sruvire alergy aswell ) but because my intalerance to glutin wont need an epie pen its of to leave it everywhere so myself along with others can stew in it uncomfortably. prity much its imossible to avoid 100% all the time and people who dont suffer will never understand. so summing it up it’s 50/50 for me. sometimes im ok with it happy go luck healthy as an ox in my own life and rutine. sometimes i need an intervetion because deep down I know it has ruined my social life.

  • Becky April 26, 2013 at 9:15 am

    Thank you so much for your honesty!! Me and my two daughters all suffer with celiacs and the frustration never ends. I get tired of people telling me how “lucky” I am to be diagnosed now as opposed to 10 yrs ago. REALLY?!?! Sometimes I want to scream at them and call them over to my house at 2 a.m. when my precious 5 yr old daughter is crying because the joint pain she suffers is unbearable and even with all the careful avoidance of gluten, it still sneaks its way into our lives now and again and wrecks havoc. I think people think if you accidentally get glutened, you’ll be better in a day or two. They don’t understand that it can take months to get fully back to “normal”. So I understand your frustration and am so glad you said out loud what I always am thinking. Big hugs to you!!

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  • Anon1 November 25, 2013 at 2:25 pm

    I’m right there with you. Recovering from accidental glutening now myself. My reaction is different but for me the same every time I get sick. TBH even though I wish Celiac on no one hopefully you can help other dieticians and doctors understand. After I was diagnosed I was sent to a dietician, she opened to half a page in an old book and told me I could eat apple and cheese for snacks as if that was some revelation. She had no clue why I got so angry. 25 lbs under weight and you tell me cheese and an apple will solve my probs!

  • Dave Lou November 30, 2013 at 9:46 pm

    Thank you for sharing. I was diagnosed with Celiac’s about 3 years ago. My immediate symptoms from eating gluten are minimal compared to yours. However, my issues which are the result of going undiagnosed for however long, are constant and seem to be pemanent. For about 4 years prior to being diagnosed, I was suffering with a number of issues that at the time seemed unrelated. It started with the feeling of heat radiating from my spine down my legs and in my feet. Then my right hand started going to sleep and eventually numb. Then I started feel extreme heat in a specific area on the back of my neck to the right of my spine. Then I started feeling tingling sensations and the feeling of “pins and needles” on my neck, scalp, and hand. During this whole time, I would become out of breathe and tired with tingling sensations around my lungs and heart. Eventually, the tingling sensations and the pins and needles sensation spread throughout my entire body. No area was left out. The sensations were random and without any particular pattern. During the 4 year period, I was sent to every specialist and too many tests and MRIs to count. The only postive thing from all of that, was one of the doctors (a rheumatologist) prescribed Gabapentin for my symptoms. Even though he wasn’t able to give me a diagnosis, I owe him my sanity because to this day, I take 2500 mg of it every day and can’t be without it. Eventually I ended up in an Urgent care facility due to an unrelated back pain as the result of a car accident. The physician’s assistant on call asked why I take the Gabapentin. When I told him my symptoms and that I hadn’t recieved a diagnosis, he suggested that I be tested for Celiac’s disease because it shows up in many different ways. My Neurologist was skeptical but ran the test. After it came back positive, he researched it and found a study in Sweden that was looking for any correlation between Celiac’s disease and damage to the Central Nervous System, which they had. Now I live with the same sensations although reduced due to the medicine, plus memory loss and difficulty concentrating.


  • KenJamesO January 3, 2014 at 12:04 am

    I rarely eat out. We preaped 99% of food ourselves.

    It sucks because there is a lot of social eating that is missed but its better than feeling crappy.

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    […] learned my lesson the hard way in 2012 after eating a “no gluten ingredients” product from Trader Joe’s without […]

  • Candace Hagerty June 14, 2014 at 2:51 pm

    Hi, I am at a loss, and I am sure others have contacted you. I am very very ill. I can’t remember anything, I feel drunk on most occasions. I am getting scared because my sister died from Addison disease in 2005. She was 18 and had all the same symptoms as me. It has progressed to where I can no longer eat anything. I become very nauseated, and then can’t think. My newest symptom is now unable to move during these attacks. My feet, legs, and hands all feel like concrete. I suspect gluten, and have asked the doctor to do a comprehensive panel on me. I am awaiting the results now. I had the most bizarre experience yesterday. The family and I were out and about running errands. We decided to stop into a local snowball vendor. Pelican Pete’s. I was really excited and relived to see 100% gluten free on the side of the building. I ordered a large french vanilla with caramel topping. It was heaven, so delicious… Half way through the cup I started feeling really funny. First it started with nausea, that turned to violent dry heaves. I spent much of each red light hanging out the door of the car. I felt flush all over, and became very weak. Breathing was so hard, so painful. I lay myself back into the seat hopeful the nausea would pass, when I realized I could not lift my head. I looked down at my arm and tried to reach for the button to let fresh air in, and that too was frozen. I remember whispering in almost shock and panic. “I can’t life my head” Such strange words to ever hear come out of your mouth. The drive home was terrifying, I could not piece together why the day spent running errands could turn so horribly wrong, so quickly. Once the car stopped in our drive way, I knew I could not get out of the car. I sat there in defeat hearing myself gasp for air. My kids stood around me, offering hugs. I could not let my kids watch me die, I pushed my legs out of the car, they felt like concrete blocks, but they had to move. Standing up, the few steps to my porch looked more like miles. Each step the ground swayed in front of me, I told myself not to fall and push forward. By this time my husband had ushered all the children inside and one of my son’s buddies had shown up for a planned sleep over. My ultimate goal was to get into the house. My hand tightly grasped my chest, and the pain was so intense I thought I was having a heart attack. My chest felt like it was going to explode. My husbands arms locked tight around me, I had confidence I could make it into the house. My legs refused to move any further, I stood in front of my door begging the foreign objects underneath me to move. Looking at my own 2 crooked feet angered me. How do I get them to move? My daughter was standing before me, and the fear on her face was enough to push forward. I had to get into my bedroom. My kids can’t see me like this.They are not supposed to see me like this! Inside of my room, I lay motionless on the bed. The pain is unbearable. I fall asleep. Waking was like waking from a dream, or a hard night of alcohol. I felt drugged. I was met by my husband offering food. A small plate of food. Some eggs with a piece of toast. I ate and an hour later I was again paralyzed. I lay with only my eyes offering free movement. My stomach refused to hold the contents of my food any longer at that point. Today I am in shock, what the hell happened? I contacted Pelican Pete’s and asked about the caramel, they apologized. The caramel could have very well been the culprit. They are investigating into the matter further. I guess they did not understand the importance of having that sign on their wall, or the repercussions some of us will face when dealing with this illness. I am still awaiting my own final diagnoses, but I am pretty sure the 2 teaspoons of caramel on my treat was enough to put me into ataxia shock from gluten. I am still such a newbie to this all. I even have fears that my medical labs will come back negative, but what else could have caused all of that? Is my enemy really gluten? Will I ever get real answers? Is this what is happening to me? I hope to find out Monday. What if it is NOT celiacs? where do I go from here? I’m so confused! So sick. and now starving, 2 day no food!

  • Julianna July 13, 2014 at 3:41 pm

    It’s been almost a year since I got diagnosed and I do feel physically better than I ever have – even as a kid … But i do keep waiting for it to be as “easy” as everyone (also including medical professionals) said it was going to be
    Does it ever get easier? I keep hoping maybe one day…

    • inspiredrd July 14, 2014 at 11:15 am

      I promise it DOES get easier. If not easy, at least easier. It took me a good two years (almost three) to get to that place. Keep the faith!

  • Julia August 24, 2014 at 12:18 pm

    Wow, I honestly had no idea how terrible it could be! Thank you for sharing your story. As an aspiring dietitian, I would have probably been one of those who said, “Oh, you’ll be fine, just go gluten-free!” So I apologize to you and anyone else who struggles with celiac, gluten sensitivity, or intolerance for that matter.

  • syd October 29, 2014 at 4:51 pm

    I react this EXACT same way. Thank you so much for writing.

  • KK November 6, 2014 at 9:33 pm

    Before I was diagnosised, three years ago this month actually, I was manic depressive. I was cutting. I was in a constant state of mental distress, unable to concentrate, emotional roller coaster. I hurt constantly, too, and rubbed my distended stomach like I was carrying a baby. I couldn’t work, I quit my job. It was a really scary time. When I was diagnosised with Celiac Disease after being hospitalized because my intestines were swollen to double their normal size and I couldn’t get out of bed, I couldn’t believe the effect gluten had/has on my brain. Getting it out of my system took six months and for the first time I felt like myself again. For me, my first cue is the stabbing pains, then the rush-to-the-toilet diahhrea and then the mental fog and moodiness. The inability to maintain control over my emotions. And it varies, depending on how much gluten (and what type of gluten) I consume. I rear-ended someone a couple weeks ago (luckily very minor accident) because my brain was in a fog. It’s a horrifying and scary, out-of-body type experience. Oh, and the headaches that last for days, yep, that too. There is nothing “easy” or “trendy” about this disease and I wish the effects this disease has on the brain were more exposed so people with mental health problems can look to their diet for help.

  • Kay November 26, 2014 at 5:08 pm

    I just moved to another country to study for the year and so far I glutened myself once by doing the same thing. I felt confident that because I had previously eaten a Galaxy chocolate bar, knowing it was GF, and then tried the Galaxy caramel chocolate bar, without looking at the label. That was the first time I didn’t look at a label for a new food, and of course, it read that it might be contaminated with wheat. Tears. This past weekend I was glutened after the waitress made me feel terrible for double-checking what was in the dish by being short-tempered with me and arguing “I don’t know what I can do to convince you”, while slamming my plate down in front of my table, full of new friends. I ate the dish, even though I was skeptical about her avoidance of the topic and obvious distress at my asking if it was, indeed, free of gluten. I had to sit through that meal for an hour, as my new friends asked questions about “What will happen if it is gluten? Would it really be that bad?”. When I returned home, I was mad at myself for letting a stranger make me feel so embarrassed and bad about myself. A year after my Celiac diagnosis, and I still can’t believe how many times waiters/waitresses have been downright mean to me for asking a single question about ingredients.

  • Sandy November 26, 2014 at 7:58 pm

    Thank you for sharing this. I just did the same thing. Got glutened last week and was almost feeling better and got glutened again. So frustrating as I was being so careful – both at restaurants who, I think, were really trying to be helpful. I looked up celiac and hot flashes – I used to think they were menopause related but I now think they are a glutening symptom. My symptoms start with blurry eyesight, can’t think, brain feels dull like I can’t make connections. Before going gf, I was having full out night terrors, waking up yelling. Severe stomach pain, mushy stools, muscle pain in feet and hands, heat in my feet, swelling in achilles tendons. I had some other issues that were autoimmune in nature also. Most of that has cleared with homeopathic remedies but the glutening symptoms still come up, somewhat less severe than they used to be. I no longer get the stomach pain and night terrors. I take a homeopathic remedy made from Gluten and it seems to help the symptoms to be less severe. It is helpful to me to hear what it is really like for others.

  • caitlan July 22, 2015 at 11:19 pm

    Iknow this post is from a while ago, but I just found it and thought I would comment. I have coeliac disease – I was diagnosed at 2, now 18. It’s tough. I havent known any different so I don’t necessarily miss any foods, it’s just the whole not eating what everyone else is and worrying if I’m eating out that I might eat something I shouldn’t. I guess I would say I’m at peace with it – I don’t mind having coeliac disease, although at times it does still drive me crazy… when I do eat gluten (has only ever happened 3 times in 16 thank god) I feel really ill almost straight away and after w hole I’m sick – the last time I had something I had some sort of rice with bits of pasta in that a restaurant didn’t tell me about and I was sick five times within about 3 hours. As horrible as that is, I do feel pretty darn lucky that the symptoms don’t last a week or so… I hope you’re finding things a bit easier now and that you’re becoming more at peace with it all.

  • Amanda December 10, 2015 at 9:29 am

    Thank you for posting this, your article really spoke to me. I am a college student, who 2 months ago on literally my first day of college recieved the phone call that I’ve been diagnosed with celiac disease, not knowing anything about it. After two months I know more, but still have a long way to go. I get extremely frustrated, sad, angry, all of the emotions you listed. That feeling of slipping because you just want to feel normal really spoke to me. I am currently having celiac symptoms at the moment, and found this page on my search about celiac disease as I often do when I am glutened, and though I am sorry you have the disease as well, it makes me feel better to know that I am not alone. Thank you again, I hope you are doing better!

  • Louise January 28, 2016 at 4:32 pm

    Hi I was dignosed with celiac a few years ago sadly I can’t cope with the gluten free food so I just eat and suffer I get my blood checked every 3/4 months and the result was so high I don’t no what to do x

  • Kate April 26, 2016 at 6:42 am

    I have Celiac and I have felt all of the things you’ve described, and it’s very comforting to know I’m not the only one who has emotional issues when it comes to this disease. I get angry and confused and impatient to the point where I have to tell my boyfriend when I think I’ve been glutened so he doesn’t think I’m an evil jerk.

    When I’m gluten free, I feel amazing. I used to be a very athletic person, playing several sports, but suddenly when I was about 14 I had to quit almost all of them because I was inexplicably overweight and all of my joints hurt (making it very difficult for me to run). In high school I was diagnosed with IBS, but not before my doctor told me my stomach problems were because I was wearing my pants too tight. Aside from the fact that his diagnosis was insulting, he thought my pants were tight because I could never find a size that fit me due to all the bloating. At fifteen, I had significant stretch marks on my stomach from how fast it would bloat. I would go from a size 14 pants up to a size 18 just from what I thought was eating too much and being “full.” I thought it was normal to feel that way. In college I was diagnosed with anxiety and depression, angry all the time, terrified and confused for no apparent reason. By the time I discovered I had Celiac at 25, I weighed well over 300 pounds and felt sick all the time, in my body and in my head. No matter how much sleep I got, I would go to work and literally fall asleep at my desk over and over until the early afternoon. The pain and sickness was so normal to me that I didn’t know what it felt like to be healthy.

    I’ve been gluten free for a couple of months now, taking pictures of myself every week. The difference is ASTONISHING. The bags under my eyes are all but gone, I have color in my face and I can’t wear pants that were skin tight on me anymore because they FALL OFF while I walk. When I get glutened now, I notice big time. It is completely awful, but my days without gluten feel like I’ve finally gotten my life back.

  • brent May 4, 2016 at 6:03 am

    This account being a coeliac describes my life too. Being a coeliac for the past 9 years, it has gotten easier but still very hard, scary and getting glutened is the worst feeling ive ever experienced. Still I keep going and hope one day I will be cured.