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How I react to gluten… what happens to you?

Posted on May 29th, 2011 by Alison Read 335 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 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?

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