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How I react to gluten… what happens to you?

Posted on May 29th, 2011 by Alison Read 349 Comments - Add Your Own »

Wonder what happens when a girl with celiac disease eats gluten? Read on!

There was actually a time that I wanted to eat gluten just to see what would happen to me. I had been gluten-free for many years, and I didn’t know how my body would react. I also thought it would make for a good blog post! Well, here it is, but not intentionally. I have been “glutened” three times in the past year. I’m not talking about a tiny bit of cross-contamination — I accidentally ate gluten. And paid for it.

First there was the muffin incident, and although there was no obvious gluten, there is no doubt in my mind that there was a significant amount of it in that muffin.

One bite of glutenMonths later came a lunch out with colleagues to an Italian restaurant. One of my colleagues ordered the “gluten-free pasta” that turned out to be not gluten-free. Oops. I found out after I had eaten one bite of her pasta. Just one bite.

And the last time was a few weeks ago, when I ate gluten at lunch. The owner of the restaurant believed something to be gluten-free, but it turned out to be an appetizer made of semolina (which is wheat). This time I ate with my colleague and nutritionist Sheila Wagner, who is gluten-intolerant, so it was interesting to note the differences in our reactions.

In all three instances I reacted almost the same way:

  • Anywhere from one to four hours after ingesting the gluten, I began to feel nauseous and my stomach started hurting.
  • The nausea got gradually worse until I ended up vomiting and having diarrhea.
  • After that I was practically comatose. I could barely walk and had an uncontrollable need to lay down and either zone out (I caught myself staring out the window and I had no idea how long I had been doing it), or go to sleep as though I have been drinking alcohol and need to pass out for a while until I sober up.
  • I fluctuated between feeling hot and clammy to feeling chilled and shivering. This combined with achy muscles made me feel as though I had the flu.
  • After sleeping, I came to and felt sober again, although one of the times I remained spacy for hours after, and even a little bit the next day.

Sheila reacted in a totally different way when we ate the same meal:

  • She had a headache by the time we left the restaurant and began to feel bloating that she has not felt in a decade.
  • She awoke at 3:30 am that night with a “blaring” headache, stomach ache, a little nausea and an elevated heart rate (like she drank a bottle of booze).
  • She couldn’t go back to sleep and the headache got much worse. Her brain felt very slow, her bowels were also slow, and she had a low back ache and left neck pain.
  • She also had phlegm in her throat and sinuses.
  • She continued to have soft tissue and joint pain the entire next day and her headache persisted for about 24 hours.

All this from gluten!

In a way I feel lucky that my body gets rid of the gluten right away, so my symptoms don’t persist into the next day like Sheila’s did. I have heard from some of you who feel it for days, even weeks. If you’ve been gluten-free for a while, it would be interesting to hear what happens to you if you accidentally (or on purpose!) eat gluten.

How do you react to gluten?

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  1. So good to learn I am not dying from an incurable disease. I have only been gluten free for 4 months and been glutened once in that time – just last week. This is my story.
    Last year I developed terrible pains in my abdomen which the doc said was diverticulitis. And I felt nauseous almost every day. I was exhausted. I had every test and ultra sound known to the medical world and they all found nothing. So of course I also began developing an anxiety disorder about my health. Finally I ran into my ‘other’ doctor who has a bit of a bend for unconventional treatment and the first thing she said was “have you been tested for gluten intolerance?” Which I hadn’t at that stage.
    This was the genetic test. My results showed 3 sets of heterozygous genes for gluten sensitivity.
    That was good enough for me. I stopped eating it immediately. Within 3 days I notice that my stools were brown instead of pale orange, which they had been for years, and were more solid.
    I still had irritable bowel syndrome and by this time I had developed eczema as well. Now the IBS is almost cleared up and the eczema is more manageable. I was 55 when I found out and the doctor said that hormonal changes in menopause mean the immune system just doesn’t cope anymore.
    So last week I asked if I could get the vegie burger at a cafe in gluten free form. No worries they said. (I live in Australia). As soon as it arrived I was suspicious. The bread was fine but the burger …? But then I thought, what harm will it do. I was a bit scared but ate up.
    That night around the middle of the night I felt tenderness in my hips. I assumed it was because I have lost a lot of weight and I had been lying on one spot for too long. I also had a pain in my neck, again, thinking it was how I was sleeping. I felt a bit nauseous when I woke a couple of hours later but went back to sleep. However, in the morning it had really hit me. I was fully nauseous, aching hips and neck, phlegm and exhausted. I couldn’t eat but managed to drink fluid. Had diarrhea once. Spent the entire day in bed aching, cold, sweating, and so on as if I had food poisoning. What made me realise that it must be the gluten was that my eczema flaired up. I also had heart rate increase and palpitations. It took a couple days to get back to eating properly and even longer to feel semi-normal again. A week later, and I am still more tired than usual.
    Can’t believe how toxic this stuff can be for those of us who have some form of senstivity.

  2. I’ve never had diarrheal/stomach pains from my gluten issues… I think that is false. When I ingest gluten about 4-6 hrs later I have symptoms of brain fog, flu (feel like crap), headaches and if I’ve had any alcohol I’ll throw up!
    I’ll also get strange pains in my joints and stabbing pains in my temporal lobe. I think it’s sad it takes sooooooooo long to diagnose and that doctors are so ignorant. It took at least a year before are started to feel normal again…. Now I wake up every morning feeling GREAT!!!!!

  3. Also…. For years I had terrible sinus pains and thought I had sinititus but alas…that ALL went away when I gave up gluten. I can BREATH!!!!!

  4. Anyone else experiences a burning head. My head feels like it is on fire whether I eat a very small amount of gluten or large. It’s hard to focus when it feels.like it is boiling

  5. I used to have sinus problems, head fog, memory loss, fatigue IBS, anxiety, depression, pssoriasis. Since giving up all grains except occaisional rice and corn I have felt more healthy and energised but when I have a little bit of my sons toast or some pasta at an event for example I get an instant headache, sore burning swollen throat feeling, bloating and feeling tired and depressed. It is hard when everything around s has so many different ingredients that you cannot see so the only option is to cook/prepare everything myself. Even the gluten free products made me sick.

  6. I have been gluten free for six years until yesterday.Went to a cafe and was served mashed with gravy by mistake.I moved it to the side and requested my french fries.There was a small amount of gravy on the pork chops ; but I scraped it off and thought it would be ok.After one bite I got the hiccups and started to gag and belch.In minutes the mucus and phlem was so bad it was gagging me.I ran to the parking lot and gagged and chocked to the point that I though I would choke to death.Another customer saw me and came to see if I needed the rescue squad ; but I could tell that the reaction was starting to subside.Once My throat cleared I was able to drive home and several hours later ate a gluten free meal.I have been belching a lot ; but that is starting to subside.
    This is by far the fastest and most violent reaction I have ever had and I hope no gluten ever passes my lips again.

  7. I am on week 6 of bloating, dizziness, constipation, major joint aches, indigestion etc from being glutened @ Claim Jumper. I didn’t know symptoms could last so long! has anyone else suffered as long or longer. is there any relief in sight? I’m getting worried.
    And oh! The gas!!!! #toxic

  8. I was diagnosed as being highly gluten sensitive this Spring and have been gluten free for about 7 months. I accidentally ate a piece of regular toast a couple of weeks ago and had no ill effects. I asked my naturopath about it and he said that sometimes a tolerance can be built up so I decided to eat a donut three days ago and have been paying for it ever since. It started with flu like symptoms including congestion, muscle and joint aches and exhaustion. The congestion went away after the first day but then the intestinal cramping and diarrhea began. More exhaustion and gas. Am now on day three and am beginning to feel a little better. Diarrhea and most cramping is gone but I’m very tired.

  9. I react exactly the same way as Sheila, except my bloating is worse than the headache. It’s “lie in the fetal position and rock and cry until you fall asleep” bloating. The headache is dull and aching. The joint pain is almost like I’ve sat or slept for too long. The amount of time it lasts depends on the amount of exposure really. Generally speaking, a minute bite of something containing gluten will affect me for 3+ days.

  10. I had an incident where as soon as a ate a few cheetos it hit my stomach which started knotting up. Then I felt sick and couldn’t say anything. My husband kept trying to say something to me. I barely said anything. He told me that I really wasn’t making sense and looked like I was going to pass out. He wanted to take me to the ER. I refused. I went to the bathroom and started moving my bowels and I felt a little better. My blood pressure was up so I took my blood pressure med and sat down. My husband called 911. I told them I think it is gluten. This seems to happen when I haven’t moved my bowels and something hits my stomach just right. Once it moves through me I will be fine. They took my blood pressure and it wasn’t too high and neither was my blood sugar. I refused to go to ER. In hours I felt better but very tired. I moved my bowels 3 to 4 times in a few hours and first thing in the morning. I was just very tired. I was told I looked white as a ghost. Once I went to the bathroom the first time color was coming back but I felt very cold. I have question gluten for a long time. I believe it is the cause of hypothyroidism. I haven’t been diagnosed with it but believe the gluten is the cause of it. I am looking into become gluten free. I also runs in my family. Any help anyone has or tips I appreciate it.

  11. Does anyone get different symptoms with separate “glutenings”? I was diagnosed with celiac 4 years ago – at the time had symptoms of bloating, numbness, tingling in legs, muscle twitching, MRI that showed white spots, joint pain, etc. Still trying to figure out what my gluten reaction is. Sometimes I’ll have diarrhea and think maybe I was glutened. Other times I’ll have leg and body twitches at night and think that I was glutened. Can the body reaction be different each time? Has anyone else experienced different reactions each time?

  12. where do I begin…
    ringing ears, foggy eyes, sneezing, bloating, heart palpitations, heat flashes, flu like symptoms, slight pain in the knees, slight headache, slight itching, tiredness, patchy skin, thinning hair. heavy arms and legs, shortness of breath, irritability, loss of interest, sensitivity to pesticides and household cleaning agents. Well I will never forget date 11/11/2011, a day before, I had a wheat bread with peanut butter and jelly sandwich went to classes as I was taking college course, I felt the most horrible feeling almost all of the above. I associated my feelings with just feeling extremely low. I was scared.I felt like my whole left side was numb – that lead me to my first visit to the emergency room. I did every test you could think of, all came back negative. I started following up with my regular visits to doctors,I was told may it low blood sugar so I was advice to eat more pasta to bring up my sugar level. I did, and continued to feel even worst. I did the celiac test etc, etc, all negative. I ended up in 3 emergency rooms, brain scan and heart scan still nothing. I started researching on my own, and changed my diet completely. I did a lot juicing and eating raw vegetables,within a year I felt close to normal again. I am a school teacher and I witnessed kids who ate wheat breakfasts and lunches goes from being normal kids to hyperactive and irritable children. A few kids unknowingly expressed slight headache after eating such meals provided. I ended up on this site because today I could hardly speak to the kids at work without feeling like I am going to pass out. I prayed an ambulance would not be called due me to passing out. My heart feeling like a heavy brick in my chest, raced vigorously, shortness of breath. I thought about going to the emergency room after work, but decided to do some researched first, which lead me to this site. After reading the experiences of others,suddenly I remembered I had a nice bowl of pasta 2 days prior. It all made sense to me again. thank you all for sharing. Regular doctors don’t seem to have a clue.

  13. Wow – thanks for sharing your experience B. Lewis. I’m sorry you didn’t feel well and hope you are feeling better. I have to ask — are you normally gluten-free? Is eating a bowl of pasta unusual for you?

  14. Perhaps if someone is looking at this in 2015, this is what happens (or has happened) to me.
    Was conpletely gluten/wheat free for two months straight. I magically gained weight for the first time in years. Then i decided to have some pizza. And that pizza also turned into butter tarts. Not so good idea. About an hour later, i got severe nausea and cold/hot sweats and chills. Morse code tinnitus in my right ear. Stomach cramps. Diarreah. Racing mind and wxtreme anxiety. Brain fog so bad it felt like i was floating above my body. Acne on my face, my paoriasis is coming back. Its ridiculous. That was five days ago. Im still having watery diarreah after everything i eat. My two months of weight gain progress is going to fly out the damn window.

  15. I have been gf for over 4 years. Unless by accident (that I do not know about), I have not had any. But something is causing me extreme fatigue, dizzy, sleepy, confused and oh the itchy prickly skin. Especially face, head and neck area.
    I think it is grain… any kind even gluten free. Corn and rice I have in like chips, or something. It makes me so miserable I am going to have to give it all up. Seems like any carbs make me want to fall asleep within minutes after eating them. Anyone know what causes this?

  16. I accidentally got glutened on Sunday- it is now thursday i am finally feeling 90% better NOT 100%! what happened immediately was belly burps i call it- where my belly begins to gurgle and flop, i should of known! on monday i felt pretty good, went to grab lunch and also grabbed a sugary soda that i sip a few and throw away- those few sips i am sure amplified all that ended up happening with my body. I went back to work and turned my head i was so dizzy it felt like my eyes were wobbling! i walked down 3 flights of stairs at end of day and felt like my shoulder was being ripped from my bone. At home i was freezing cold and then hotter then heck this went on for 24 hours, horrific headache where plot how to cut my head off to survive it! but the worst was the joint and muscular pain, every joint every part of my body hurt like i was dying! it was an all out attack on my immune system and it was horrific! i am on day 4 of coming out of this my legs are still in a lot of pain, my feet are burning hot on bottoms and my right arm feels like it is broken or i pulled muscle off the bone. I want to know why in the world anyone would ever EVER want to eat this!!!!!!
    why do we have this!? who would want to feed this to children?? it is horrible. GLUTEN IS EVIL!!!

  17. Omg…..i have been having what i call episodes just like you described exactly i cant belive it i am so glad i stumbled on you page !!!!!! Thankyou so much for posting this i will now go and look at starting the testing

  18. Not sure if gluten is my problem. My doctor said “You might have a bit of gluten sensitivity there”. 16 years ago. If I ingest a white flour hamburger bun with other foods (fries) without taking a digestive aid, (Beano being my aid of choice) I burp up a foamy slimy ball of I don’t know what. The next time I “burp” it is vomit. Without Beano or Digest More I start yawning an hour or so after eating. Then irritability kicks in. Cannot sit still. Just want to get my clothes off and get into bed. Then the gas is enough to make me not want to leave the house. I literally wake up in the night to fart. And a stabbing pain in my upper back sometimes. And the sneezing! 20 times yesterday after eating a cinnamon bun the day before. I made them. Wanted to try. When I went on Atkins a few years ago the gas stopped. What took me so long?

  19. I’ve been gluten free for 5 years. I tasted about a tablespoon of cupcake batter today (I’m baking for my church group), and within minutes I got heart palpitations and feel flushed and sweaty. I was tested for both celiac and gluten-sensitivity last year and the results were negative (blood). This happens every time I bake with regular flour. I have no problems when I use GF flour. Interesting…

  20. So interesting to hear about these symptoms that are so new to me. I started a gluten free diet 3months ago. I lost the belly bloat after a few days and my joints didn’t ache as much. I never thought it was the gluten. Anyways, last week I had wheat products (bread and pasta) on three or four occasions. I was so sick. I was bloated, sharp pains in my stomach which seemed to move down to my abdomen area in the following days. So painful to the touch. No bowel movement for 3 days and trapped gas. On one of those days I felt like I had the flu, so achy and tired. After all that I’m gonna be more careful now.

  21. I was tested for gluten intolerance a year ago,(after I had cut it out of my diet three months before) it was negative. I’ve had two bouts since where I’ve had say a week or two of lightly taste bread and cake with gluten in, now I’m bedridden for the last three days with brain fog, nausea,slow sticky bowel and no apetite!weak as a kitten and almost comotosed with fatigue! I swear it’s gluten, the docs have tested me,had camera in every orifice twice over for blockages, had laparoscopy for adhesions last year, and they keep trying to tell me there’s nothing wrong with me and put me in the IBS category! It’s sooo frustrating, I think the docs think I’m exaggerating when I say I feel as tho I’m going to die from the attacks! I’ve been researching gluten and now scientists are researching it for Cot deaths which after having the fatigue and brain fog I can see how easily it could kill a poor baby, if mother is breast feeding and eating gluten, or formula milk with gluten in! If it can take me to my knees and bed for a week ( I’m normally very fit and strong and hardworking, never sick or bedridden, avoid docs at all costs) I can quite easily see how it can be very dangerous for newborn babies who are normally sleepy anyway for the first six months of their life!! I’m 55yrs old if I had my life again I would have never fed gluten products or lactose to my children! Never!

  22. After many test it was revealed by trial and error I cannot eat gluten but every now and then it slipps into your meal. Then came the attacks first they were uncontrollable stomach pains leading to vomiting and
    Diahreer and 4 days in hospital recovering now 4 years down the track the pains Still come but don’t seem to be as bad,I know when an attack is coming as I start belching the most disgusting smell and taste and over about a 4 hour period it gets worse then comes the vomiting and diahreer again. Does anyone else have the belching problem it is so bad my husband is nearly sick with the smell. After 24 hours I seem to come back to normal but very tired for a few days. We use to dine out a lot but no matter how careful you are you still don’t know how things are cooked in kitchens and cross contamination of foods can play a big part in gluten intolerance. I’m so over it 😔.

  23. I glutened myself yesterday ate some fries that had apparently been cooked in the same fryers as the breaded items on the menu. I get a little different symptoms. I can tell when I have ingested gluten, because I get sever anxiety and panic attacks. Then the next day it catches up with my stomach and pretty much gives me IBS symptoms. After that It leaves my stomach in awful pain for the next several hours. The anxiety is a killer and leaves me feeling spacey and off for a couple of days. No fun! Need to cook at home more 🙂

  24. I get allot of the symptoms of your friend neck and back ache bad stomach ache and unfortunately i will feel like im dying and vomiting (no eating or drinking pretty much) for a week its pretty severe and its happened twice now i do not plan on letting it happen again

  25. Previous history of IBS, most common symptom was bloating and gas. Cut out white bread. This helped, but small amounts of wholemeal caused bloating. Two years ago, felt tired, bloated, began to get dull headaches, so gave up gluten as friend suggested. I began to feel amazingly healthy, had more energy, headaches ceased, slept well, and anxiety reduced. Gradually, I began to eat the odd wrap, a slice of cake, and thought the gluten sensitivity had gone! I still felt well, until about two weeks ago, when I began to experience a feeling that my ears had blocked, plus the gluten headache appeared. I began to feel anxious, and wasn’t sleeping well. Bloated tummy etc. I am now back on a gluten free diet. Silly me, thought the gluten sensitivity had left me!!! Found this site, thanks for all the helpful comments.

  26. I have been having problems off and on for years, finally getting way worse in March 2016. In the beginning, probably in my mid-30’s, I would have occasional toxic gas. And stomach cramps/diarrhea. Not every time I ate, but mainly when I ate out. I thought it was due to rich food/grease/etc. Chinese food would not sit well, I would typically run to the bathroom before leaving the place. Pizza Hut was the same. Then about 3 years ago, in the fall, I would get this red, swollen, painful rash on my face. Typically in a “beard” pattern. It felt like needles from the inside, and like it was on fire. I was able to control with proper skin care, and added Prosacea ointment (homeopathic treatment for rosacea).

    I wasn’t sure what the deal was. Was it cold weather, was it gluten, lactose, MSG??? I had no idea. I thought at one point the rash was due to my flu shot I had received a week prior. Well, fast forward to March of this year. Had some beers out the night before, and pasta. Face rash in full force, along with joint pain (which is always there, but flared significantly), bloating, diarrhea, foggy feeling and restless legs. Then I decided I would do an elimination diet. I tried the “cabbage soup diet” for a week. DRASTIC improvement in everything and the face rash left rather quickly. the day after the diet was over, I tried one bite of garlic bread and symptoms were back full force. My doctor told me, after seeing my pictures, that it could be celiac disease, and if not eating gluten makes you feel better, just do that. SO I had kept as gluten free as I could, and kept a food diary. Had a few slip ups, and every time the reaction was worse than before. I went to an allergist in July to see if they could help me. They ran an IgA blood test. the areas that lit up (even though she said not significantly – also I was trying to eat GF for a few months now, so possibly that affected the tests) were wheat, barley, brewer’s yeast. Hmm. So I guess I will continue to try and eat as best I can but it is so hard!!!!!! I can barely eat anywhere but home, because of the risk of cross contaminations. I would love to feel normal again. Even my sense of taste and smell has changed since March when I really flared up. Does anyone have any ideas at all for me??????

  27. Found out I was gluten intolerant at week 14 of and exclusion diet to get rid of acid reflux. Acid reflux is the caused by coffee. On week 14 i baked cookies, whole wheat bread, whole wheat pizza dough, and pop open a home brew. Got into the cookie, and beer then my world was rocked! Head starts to spin, then to a migraine, and my whole GI track fires off. It feels like I am being physically kicked from the top of my head to my groin. It lasts about 6 hours. The pain is so bad that if I had a gun, I would be dead. Basically every neuron in my body get’s immensely pissed off. After the 6 hour I am a zombie for the next 24. Can’t eat, vomit, feel like my brain after a concussion. It has lead me to whole plant based diet (vegan). Vinegar is the most processed food in my house. Can not eat out. Take all my food on vacation. Stopped world travel at 54 countries.
    Change my entire world!

    Dr. Tom O’Bryan is a great source of information and inspiration. Good luck!

  28. I have been suffering with sore and swollen throats for about a year. Also a lot of burping. Also a lot of problems I think are IBS. I have not been tested for gluten . After reading this I think that may be the cause. I also had every test and scopes done to. Having a lot of Anxiety. Any input.

  29. I am 46. The past few years I have been dealing with menopausal issues. I have suffered since the age of 15 from IBS and in the spring of 2016 I had my allergy issues retested after 15 years when my doctor retired and a new one took over.Both were giving me problems during this time- increased stomach trouble, and constant phlem, hives, and swelling facial issues that kept me on the edge of reaction every day. They decided I would benefit from shot therapy. It went fine for 6 months. In the fall I started having anaphylactic reactions to my shots, so they did more testing. Celiac and gluten sensitivity both came back negative. Meanwhile my weight and blood pressure both began to skyrocket. Desperate, I have started avoiding gluten (FODMAP diet) and processed foods. I have dropped over 10 pounds in about a month in a half. However today I had a strange issue occur. My husband and I went to breakfast and I gave into a craving for a biscuit and gravy. About 3 hours later I thought I was having a really severe hot flash, but I also had body aches, dizziness and nausea with extreeme gas and bloating. I had my husband take me home immediately and I laid down feeling sick and slept for almost 4 hours. I feel better, but still slow, heavy and gassy. This sounds like I read in the other posts. Is this reaction common even if you don’t have celiac or gluten sensitivity? SHould I add gluten back in, allthough it is helping my IBS off of gluten? Am I missing something they have not tested me for??

  30. Has anyone ever had their lymph nodes swell up in their neck and armpit? I went to the doctor and they said there was nothing serious going on, and they weren’t quite sure what was causing it. Been swollen for awhile and have not been sick. I am gluten intolerant, and I have had gluten 3-4 times in the past month.

  31. I been trying to go gluten free for a couple months now and hasn’t been easy, but this last time I went for two weeks. I ate some cookies and my throat was sore and stuffiness. The sore throat is new my usual symptoms is stuffiness. My dr said was sinusitis, but I didn’t think that. Also IBS and feeling tired a lot and anxiety. The days I wasn’t eating gluten the symptoms was a lot less. The sore throat this time I actually thought was strep was that sore. I’m going to try harder to not eat gluten

  32. Reading everyone’s symptoms makes me not feel so alone. I recently discovered I was gluten intolerant. It took about a month of being sick on and off for no reason. Started with severe nausea and then vomiting. Every time I had pizza, I felt terrible. It was either the gluten or the cheese. Gave up cheese for a few and no difference. Then gave up gluten and started feeling better. Decided to have half a waffle when I went out to breakfast one day and was out for 2 days basically. Exhausted, nauseated…like I had the flu. Then fine. I was gluten free the whole next week until I had some french fries from the habit burger that had just a very slight coating of something. Had to leave work and went home vomiting. And now a sore throat is included in all of this. Like a bad sore throat. So now I’m trying. I have given up on most things and feel fine about it. The thing I miss the most is beer. I loved craft brews. I have tried gluten free ones but haven’t yet found one I like. I’m also a type 1 diabetic and hear that and gluten sensitivity/allergies come with it frequently. It overlaps a lot so maybe that is what hasn’t made it terrible to give up some things. I just am feeling like I am so high maintenance right now and am even more scared to travel. I would hate to feel like I have if I was on a trip…

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