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What Is The Severity Of Your Reaction To Gluten?
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Hello, I'm new to this site :)

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

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Hello, I'm new to this site :)

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

I am two months past eatting gluten. My reactions seem to be getting "more defined." When I was eating gluten I would just feel so tired all of the time. I couldn't tell I was reacting at all. However, about 4 days after going gluten free I started realizing my body's opionion of gluten. I react to gluten in the air or cross contamination. My first reactions were mostly dizziness and fatigue. Some reactions I experienced diarhea and nausea. Lately I have felt like glands are swelling in my neck, coughing, or horseness. I also notice swelling in my abdomen and legs, but I can never pin point when the contamination occured. Most of my symptoms are fleeting, I notice them and they are gone. They do seem to be getting more severe.

I hope you do not learn to cheat as your cousin does. Eat well and be careful. Your body will appreciate it! It is not much fun to disappoint your body. :angry:

I am glad you found out young and wish you the best.

Diana

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My niece is a diabetic coeliac: she cheats: she spends a lot of time in hospital.

My eldest is a symptomatic coeliac - reacts almost to a whiff of the stuff: her sister is an asymptomatic coeliac - no external reaction at all. As their gastroenterologist pointed out, looking at their biopsies, the external reaction [or lack thereof] is one thing: the most important thing is the internal damage - and that is the same for both, regardless of symptoms/no symptoms ..

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Welcome! I've been gluten free for almost a year. With cross contamination I get stomach gurgles and a lot of gas... it puts me in such extreme discomfort. My mom tries telling me it's normal to get gas and I'm like, 2-3 hours worth of constant burps and painful bloating? Eh not so normal.

A few times when I think I was legitimately glutened I got REALLY tired. I never take naps and if I do they're 20-30 mins. After gluten exposure I'm out for about 2.5 hours. Luckily I usually feel better when I wake up.

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Vomiting within three hours. Panicky and light headed.

richard

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I've been off gluten for four years now and my reaction to gluten now is the same as it was then. Mine is like a week long cycle that seems like forever to get through. My stomach hurts almost immediately after eating it and depending on how much I eat I might throw-up. Then my insides will proceed to hurt for about two to three days. Because of this stomach pain I have a very difficult time sleeping and I'm tired all the time no matter how much I sleep. I get cramps in my muscles and all of my limbs ache. I get rashes on my legs and sometimes my arms and I'm extremely moody and irritable to the point where I have to lock myself away just to get through my day without screaming at anyone.

My younger brother also has celiac and his reaction doesn't make him nearly as sick as I get. He cheats often to and isn't all that careful when it comes to cross contamination. But I don't care. I feel better when I am not sick with gluten. His insides rip themselves apart just like mine do, and I'm actually thankful I have a reaction because it makes it easier not to cheat. Maybe if he got as sick as I do he wouldn't cheat. But he's a grown man. He can do what he likes.

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I'll have been gluten free for a year in Septemeber. When I have gluten my reaction occurs within 10 minutes of eating the stuff and I'm in severe pain for at least 3 days. I'm crabby and irritable because of how uncomfortable I am. I wish I could just take a nap and escape the discomfort for a few hours but the pain is so intense that it makes it nearly impossible to fall asleep no matter how tired I am...

I only eat certified gluten free food that's made in a dedicated gluten-free facility so I have no idea how I am with cross contamination, but with every other aspect of ingesting gluten I am super sensitive. I am hoping that with time my reaction wont be so bad, but I have heard mixed experiences where the pain subsides for some or stays just the same for others......

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I'll have been gluten free for a year in Septemeber. When I have gluten my reaction occurs within 10 minutes of eating the stuff and I'm in severe pain for at least 3 days. I'm crabby and irritable because of how uncomfortable I am. I wish I could just take a nap and escape the discomfort for a few hours but the pain is so intense that it makes it nearly impossible to fall asleep no matter how tired I am...

I only eat certified gluten free food that's made in a dedicated gluten-free facility so I have no idea how I am with cross contamination, but with every other aspect of ingesting gluten I am super sensitive. I am hoping that with time my reaction wont be so bad, but I have heard mixed experiences where the pain subsides for some or stays just the same for others......

My symptoms increased in severity for 5 year until my boyfriend forced me into a gluten-free diet, which was the catalyst for my diagnosis. After only one day into a gluten free diet I had completely stopped vomiting, which was mind blowing. Now 2 years into being gluten free I rarely get "glutenized" but when I do the result is devastating. The last time I checked my reaction (a year ago) I ate half a frosted mini-wheat and within 9 mins I was down n out. First I start to get uncomfortable, my stomach becomes distended and I become unable to go to the bathroom. Its as if my entire digestive tract shuts down. I become very awkward about bending my abdomen or anyone coming into contact with it. Then vomiting which persists long after my stomach is empty. Accompanied by on and off again cramping and pain in my trunk region. After a night of drinking tainted margaritas in Hawaii last year I spent 8 hrs in the hotel shower vomiting, crying and passing out. I was sick for around 18 hrs and lost 2 days of vacation. I have not gotten sick from hidden gluten for 6 months!

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Hello, I'm new to this site :)

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

I'm 14 and have been gluten free since I was 22 months old. I have diarrhea and depending on the amount I eat pretty severe vomitting. And overall, I just feel terrible after eating it.

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Not diagnosed (yet, bloodwork tomorrow) but I know when I eat gluten filled foods I panic, lightheaded, light sensitivity, dizzy, upset stomach, then usually after all thats over I get gasious, stomach rumbling, the normal IBS symptoms.

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Not diagnosed (yet, bloodwork tomorrow) but I know when I eat gluten filled foods I panic, lightheaded, light sensitivity, dizzy, upset stomach, then usually after all thats over I get gasious, stomach rumbling, the normal IBS symptoms.

Good luck with the bloodwork!

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Good luck with the bloodwork!

Thanks a million man.

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Hi:) I'm new to this site as well as to being gluten intolerant. I am 18 years old (nearing 19 now) and had been complaining for many years about aches, an always upset stomach, and incredible headaches. We thought at first that I was lactose intolerant because I noticed my stomach beginning to hurt immediately after breakfast (I would eat cereal or grits almost every morning) and we thought the dairy was causing the problem. It was in fact my favorite cereal (Frosted MiniWheats). Now that I have been gluten free for around 4 months now, I have noticed that my symptoms are more severe when I do slip up. I become extremely dizzy and my head starts hurting almost immediately. Stomach issues usually take 2-3 days to get rid of. Does anyone know why my symptoms would be getting worse? Is it just because my body isn't used to the gluten anymore..?

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Eh. I'm sick for weeks and then I get sick a lot more often, I can't eat sugar, my digestive track is a mess, and I'm not better again for years. I've never actually eaten gluten afert i was diagnosed, but I know what it was like BEFORE was diagnosed.

B)

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Hi:) I'm new to this site as well as to being gluten intolerant. I am 18 years old (nearing 19 now) and had been complaining for many years about aches, an always upset stomach, and incredible headaches. We thought at first that I was lactose intolerant because I noticed my stomach beginning to hurt immediately after breakfast (I would eat cereal or grits almost every morning) and we thought the dairy was causing the problem. It was in fact my favorite cereal (Frosted MiniWheats). Now that I have been gluten free for around 4 months now, I have noticed that my symptoms are more severe when I do slip up. I become extremely dizzy and my head starts hurting almost immediately. Stomach issues usually take 2-3 days to get rid of. Does anyone know why my symptoms would be getting worse? Is it just because my body isn't used to the gluten anymore..?

Your immune system fights against gluten. When it has been gone from your diet, those little immune system "soldiers" get all rested. Then, when gluten enters your system those well rested "soldiers" can attack with full force. That's why your reactions are stronger now.

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When I get glutened, I typically don't notice anything for at least 5-6 hours, but then it hits. Hard. I get diarrhea, gas, constipation, I'm typically very tired, and achy. I get miserable enough that even though I'm not a diagnosed celiac, I never cheat intentionally. Yes, I occasionally get accidentally glutened, but when I do, I can tell. Yuck. <_<

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I can point to exactly four serious glutenings in my 10-year gluten-free journey. One was very early and I had no reaction. The next was a few years later and I just made it to the bathroom 4 hours after the offending food. Next was a few years ago and I spent several hours trying not to barf and spent the next day on the couch feeling weak and foggy. The last was just a few weeks ago when I ate a Rudi's hot dog bun that was not gluten-free (MY bad in not being more careful reading the bag!). About 2 hours after I ate it I spent the next 3 hours sitting on the john w/ a waste can in my hands as my digestive system completely purged itself from both ends. I've never been that sick!! Since then, I've "gone off" some foods and had to take it really easy for the next day or 2.

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Hi:) I'm new to this site as well as to being gluten intolerant. I am 18 years old (nearing 19 now) and had been complaining for many years about aches, an always upset stomach, and incredible headaches. We thought at first that I was lactose intolerant because I noticed my stomach beginning to hurt immediately after breakfast (I would eat cereal or grits almost every morning) and we thought the dairy was causing the problem. It was in fact my favorite cereal (Frosted MiniWheats). Now that I have been gluten free for around 4 months now, I have noticed that my symptoms are more severe when I do slip up. I become extremely dizzy and my head starts hurting almost immediately. Stomach issues usually take 2-3 days to get rid of. Does anyone know why my symptoms would be getting worse? Is it just because my body isn't used to the gluten anymore..?

This is a late response but in answer to your question, when you are exposed to something so long it can actually weaken your immune system by exhausting it essentially. Once the immune system has a chance to "relax" and build itself up again, it can attack with more force. This is why it may seem as though it is worse than it once was.

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i feel pretty sick and really tired im 16 by the way :)

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16 oh wait Im 17 now my stomach hurts for 5 days and I can't sleep well. I start having horrific arthritis symptoms and I get very tired. Oh and I bloat.

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Had my first obvious (accidental, of course) gluten-related reaction in my life this week. I was diagnosed as a silent celiac and had never felt ill (when I say ill I mean GI issues) until now. Wow - what a change! I began eating a pudding cup and 15 minutes later had an instant migraine, my sinuses became very plugged, I vomited and had D. I re-checked the dumb label and somehow had missed "wheat starch". No clue how I missed that but sadly I did. Symptoms lasted about 48 hours then I developed several canker sores on my lips. That too is unusual for me. Anitihistamines took care of that, thankfully. So, now I know I react badly to gluen after being gluten free for nearly two years. Interesting! In fact, as I mentioned on another thread, I am actually relieved I had a reaction so I know now that I do react so know what to look out for. It can be tough not knowing whether you have been glutened or not, even if you are as strict as you can be!

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Instantly ulcers appear in my mouth, bloating, diarrhea, vomiting, skin rash (sometimes fine rash, sometimes hives), irritability, anxious, brain fog.

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Hello, I'm new to this site smile.gif

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

Hi Kaitlyn!

I am 22 and have been eating gluten free since August of 2012. My reactions to gluten have gotten slightly more severe since I stopped eatting it. I have had severe cramping and other gastrointestional upsets from gluten my whole life (Though I didn't know what was causing it untill I was 21...). Now in addition to that my throat swells when I eat it :P The pain lasts an hour or so and I have to take an antihistamine for the throat swelling. I am sorry the reaction lasts so long for you! I know how bad that pain can be! :(

- Shayna

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i barely get anything from slight contamination, but if i accidently ingest a noticable amount. I get cankersores, then about 6-24 hrs later i might get some diarrhea, and ill be tired for a few days.

If you do ingest gluten i recommend taking some glutamine, i used it as a training supplement, but it turns out that it helps re-line your intestines and get everything going to the proper speed again.

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    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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