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Dealing With Being Asymptomatic
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I am a 19 year old celiac and have had it for five years. Prior to being diagnosed, I was asymptomatic. While a lot of people may consider me lucky for never having to deal with the crappy feeling of being "glutened," it does have its downsides. For example, I am never sure whether something I ate had gluten and sometimes, I feel I exhibit some symptoms of being "glutened" but am never sure.

 

Well, today I have been feeling terrible. I have seriously gone to the bathroom around ten times today not feeling well and am itchy and sweating a bit more and I feel hot. Of course, I am wondering if maybe I did somehow eat gluten and that is the cause or if it's just regular food poisoning or just a bad bout of something. And that's my issue......I never truly got a feel for how it feels to be contaminated so when I have stomach pains or something along those lines, I never am sure whether it could be gluten or something else.

 

So I guess I am asking......can someone give a summary of how they feel when they eat gluten? How do you differentiate this from something else?

 

PS: I know the symptoms are all over the web and I have looked many times at them and it just gets so confusing. I just thought personal help would be better for me to understand the actual symptoms of the disease, as I never truly "experienced" them knowingly ever.

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I am not very symptomatic...and that said my symptoms have changed multiple times over the past two years.

The only way I figured it out was that "it" happens more than once after eating out. And that's the ONLY time I feel "it". Then, I'm pretty sure it's gluten since that's the only thing I avoid.

I've gone from a headache in 2 hours to a ball in the belly, to stomach clenching at 24 hours (and continuing for 2 weeks) to bloated belly instantly.

It's irritating.

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I am a 19 year old celiac and have had it for five years. Prior to being diagnosed, I was asymptomatic. While a lot of people may consider me lucky for never having to deal with the crappy feeling of being "glutened," it does have its downsides. For example, I am never sure whether something I ate had gluten and sometimes, I feel I exhibit some symptoms of being "glutened" but am never sure.

 

Well, today I have been feeling terrible. I have seriously gone to the bathroom around ten times today not feeling well and am itchy and sweating a bit more and I feel hot. Of course, I am wondering if maybe I did somehow eat gluten and that is the cause or if it's just regular food poisoning or just a bad bout of something. And that's my issue......I never truly got a feel for how it feels to be contaminated so when I have stomach pains or something along those lines, I never am sure whether it could be gluten or something else.

 

So I guess I am asking......can someone give a summary of how they feel when they eat gluten? How do you differentiate this from something else?

 

PS: I know the symptoms are all over the web and I have looked many times at them and it just gets so confusing. I just thought personal help would be better for me to understand the actual symptoms of the disease, as I never truly "experienced" them knowingly ever.

I am also an asymptomatic Celiac. But while I was eating gluten before my dx I felt horrible all the time. I was afraid to go to the doctor because I thought I might have intestinal cancer. After a few months gluten free I realized I hardly had a reaction anymore. But I know I have celiac, I had every classic symptom plus complications that could not have been anything else, so I avoid it at all costs. Its hard to tell when I've eaten gluten, sometimes my feet and hands ache but even that might only last a couple minutes. Several times I have had random symptoms like itchy skin. By contrast, my other allergies involve hours of intense stomach cramps, nausea, or vomiting.

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    • Hi, you can try reporting your own post.  That should alert the site admin of your request.  I don't think they can delete your posts, but changing your user name may be possible.
    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
    • Research Celiac Ataxia for potential diagnosis. Look at Milk and dairy for potential head and sinus related issues.  I stopped dairy and I can breathe now! Saturated fat may also be a problem, but it's mostly dairy!
    • It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will.  Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories.   It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next.  He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
    • I'm 43 years old. I'm married and have two teen daughters. After all these years it was one of my daughters who tonight said to me: "you probably have Celiac disease" after hearing my wife and I talking about all the pimples I always get on my arms. I never heard of the disease but I have heard about a lot of people having gluten allergies and didn't know they were the same thing. So I started looking it up on the internet. Turns out I have had all the symptoms all my life and no one has ever said anything about it possibly being Celiac disease. When I was a kid my doctor gave me prescriptions to antibacterial soaps to use for the arm pimples. Hibitane I think was one of them. And I've always had swollen looking ankles as long as I can remember. All my life people have noticed it. As a kid and teen I played lot's of sports and have broken my ankles and sprained them so my mom and I brushed it off at that and so did my family doctor when I was young.  But I always thought it was weird that the swelling continued all these years.  I have had a bloated feeling stomach all my life too and chronic diarrhea. My stomach is always hard and swollen feeling. Not ever knowing what that stuff was related too so I have never mentioned the bloat or diarrhea to a doctor. Just kind of embarrassing I guess. As my wife and I were reading about Celiac Disease on the internet together tonight she pointed out to me that that's probably why these symptoms almost all went away when I did a very low carb diet for about a year straight to lose weight a couple years ago. I had solid bowel movements, no bloat, ankle swelling went down but I thought the improvements were from weight loss and just eating healthier . But perhaps in reality it probably had a lot more to do with not eating all the wheat products/gluten products. So tomorrow I will be seeing my doctor to talk to him about it and to ask for the blood tests. I have read that I should continue eating gluten though until my testing is done. So that is crappy but I guess it's better to know for sure. Something else I think I should point out too is that I get headaches quite a bit after having big meals. Now I am thinking that may have something to do with the gluten too. I have read that some people with Celiac also get headaches with the other symptoms. It's great to see there is a forum like this to help people out with these issues. If I test positive for Celiac I will for sure be following this forum closely for advice and diet/nutrition help.
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