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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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tama_chan    0

Hello everyone,

I’m a 20 year old male with some serious problems. I’ve had constant constipation, abdominal pain and excess gas (that will NOT come out) for months and months now. Each month getting worse, and every other hour I usually have painful problems. I’ve checked with my doctor on doing these:

High fiber diets

Gas pills (Gas X, Belladonna, Hyoscyamine, Dicyclomine)

Fiber laxitives

After all these didn’t have any effect whatsoever, I went to a specialist and had a barium enema and a colonoscopy done. Both were a success but they found nothing at all wrong with me. I am still having these problems and all of my doctors have pretty much given up on me. I’ve gone to a nationalist to ask about celiac and lactose intolerance, and I’ve tried completely taking out dairy in my diet (but it didn’t help). I am going to try celiac next, but I guess my main question is:

Someone with Celiac disease, if they do eat any wheat/gluten in their diet, could have such extreme problems as gas that wont come out, and abdominal pain for HOURS and hours and hours? From what I read about celiac, it only occurs a half an hour after you eat, maybe for no more then one hour. I am having these problems every single hour of the day, but I’m not going to rule out Celiac until I’ve tried it. Please tell me your thoughts on this, because I’m a physically active male, I’m young, and I’ve pretty much lost hope in western medicine.

Thanks again,

Chris

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Carriefaith    5

Welcome!

I think it is very possible that you may have celiac or even a wheat or gluten sensitivity. It is definately worth looking into, especially since the doctors have already looked in the large intestine and found nothing. Celiac disease damages the small intestine and it need to be biopsied in order to see the damage. However, if you want a blood test and a biopsy you have to be eating gluten or else you could get a false negative result.

Someone with Celiac disease, if they do eat any wheat/gluten in their diet, could have such extreme problems as gas that wont come out, and abdominal pain for HOURS and hours and hours?
Yes, extreme gas and abdominal pain are some of my symptoms. My severe abdominal pain came after being gluten-free. Meaning when I am "glutened" now I have pain that I didn't have before I was diagnosed. I once had severe abdominal pain off an on for about 1 week after I what believe was a gluten contamination. The last time I believe I was "contaminated" I also had this pain and it was so bad I literally couldn't move. It was scary. Everyone responds differently to gluten when they have celiac disease, some have no sypmtoms, some have most of them, and others have only a few.

I hope you find an answer soon. Keep us posted.

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tarnalberry    314

No, symptoms can often last for much more than an hour. Your plan, of trying the diet, is a good one - the dietary challenge is a test in and of itself. I'd encourage you to read up well before starting it, so you're confident you've elimintated all hidden sources of gluten, but giving it a try is on the right path.

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tama_chan    0

Thanks for all the information everyone! I am going to try this out and see if it helps. Would I see a change in several days if I was on the diet? Or does it take longer?

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KaitiUSA    7
Thanks for all the information everyone! I am going to try this out and see if it helps. Would I see a change in several days if I was on the diet? Or does it take longer?

You may see a difference that soon but do not go expecting that. Different people vary with the amount of time it takes for symptoms to go away. It took mine 6 months to get better and a few more months to get back to normal. It also depends on age, how long its been undiagnosed, how much damage there is, etc.

Hope you feel better soon :D

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Guest Eloisa   
Guest Eloisa
Hello everyone,

I’m a 20 year old male with some serious problems. I’ve had constant constipation, abdominal pain and excess gas (that will NOT come out) for months and months now. Each month getting worse, and every other hour I usually have painful problems. I’ve checked with my doctor on doing these:

High fiber diets

Gas pills (Gas X, Belladonna, Hyoscyamine, Dicyclomine)

Fiber laxitives

After all these didn’t have any effect whatsoever, I went to a specialist and had a barium enema and a colonoscopy done. Both were a success but they found nothing at all wrong with me. I am still having these problems and all of my doctors have pretty much given up on me. I’ve gone to a nationalist to ask about celiac and lactose intolerance, and I’ve tried completely taking out dairy in my diet (but it didn’t help). I am going to try celiac next, but I guess my main question is:

Someone with Celiac disease, if they do eat any wheat/gluten in their diet, could have such extreme problems as gas that wont come out, and abdominal pain for HOURS and hours and hours? From what I read about celiac, it only occurs a half an hour after you eat, maybe for no more then one hour. I am having these problems every single hour of the day, but I’m not going to rule out Celiac until I’ve tried it. Please tell me your thoughts on this, because I’m a physically active male, I’m young, and I’ve pretty much lost hope in western medicine.

Thanks again,

Chris

I agree with everyone about the symptoms of Celiac but when you get this bad you really got to eliminate things. The book that the forum recommended to me was Breaking the Viscious Cycle which immediately helped me when I was feeling bad. My husband had colon cancer and suffers from similar symptoms of what celiac does and the book has helped him too.

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Jnkmnky    1

You should have the blood work done before eliminating gluten from your diet. Try to get an appt for a blood draw on Monday morning. I've found I don't need appts for blood work, just a call ahead, and show up early in the morning. I would want the blood work done. My opinion.

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KaitiUSA    7
You should have the blood work done before eliminating gluten from your diet. Try to get an appt for a blood draw on Monday morning. I've found I don't need appts for blood work, just a call ahead, and show up early in the morning. I would want the blood work done. My opinion.

Completely agree here. Do not start the diet until you have all the testing you are satisfied with done. If you decide to go gluten free and then get tested it can cause false negatives unless going back on gluten for an extended amount of time. You should request a full celiac panel with the following tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

A gene test would not be a bad idea either because 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene

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tama_chan    0

Thanks again everyone, I'm going to call in with my doctor first to try the blood work. This has been going on for months now, and it's just getting worse and worse, so I hope this can give me some relief. I always assumed before that celiac was more genetic, and found it odd that I could have this because both family lines in my blood have never had digestive issues. But I guess that isn't the case. ^_^ anyway thanks again.

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julie5914    0

I also recommend getting referred to a gastroenterologist if you haven't alerady. I have found that family docs like to treat your symptoms, whereas the specialists want to find what is causing your symptoms and start taking care of that. Your doc has tried to rule out some things in causes with the colonoscopy and things, but there are still many other things to consider, celiac being one of them. Doctors have been telling me for years to eat more and more fiber, so I ate tons of bran, everything whole wheat, and oatmeal or shredded wheat every morning. I was damaging my intestines every day because of their advice. You do need to stay on gluten to get tested - confirmation of the disease is important in my opinon. But just 2 slices of bread a day is enough if you are really in pain from it. Get your fiber from Benefiber powder. It dissolves quickly and it tasteless and pretty much invisible.

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Carriefaith    5
I always assumed before that celiac was more genetic, and found it odd that I could have this because both family lines in my blood have never had digestive issues.
Sometimes people can have celiac with no symtoms or very few symptoms like fatigue and anemia.

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KaitiUSA    7
I always assumed before that celiac was more genetic, and found it odd that I could have this because both family lines in my blood have never had digestive issues. But I guess that isn't the case. ^_^ anyway thanks again.

It is genetic and your family could have had this in the past and just not known about it. You could have had people in your family who have carried the gene but just never had the celiac "activated" and then passed the gene down to you and yours was "activated" You don't have to have any symptoms at all so that has made it hard to diagnose along with the doctors lack of knowledge about it.

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Nevadan    0

I'm new to this too, but just for the record, I've had abdominal bloat, gas, and constipation for over 30 yrs. I've asked several family doctors about the gas in particular and was always told "eat more fiber" so I dutifully ate wheat bran cereal topped with Allbran Extra Fiber every morning for years. Recently things seemed t be getting worse and the gas was becoming a social problem. I also was diagnosed with osteoporosis (after my older brother was diagnosed even though I had no symptoms) about 5 years ago. I follow the osteo news and saw an article recommending that all celiacs should have bone density tests, and being a (non-medical) scientist by education it seemed logical to me that the converse might be true, too. So, having very little confidence in medical doctors (except for commons ailments, accidents, etc), I did quite a bit of research on celiac disease and decided to go glutin-free for a while to see if it made any difference and voila, two days later all my symtoms were gone. I then went to my GP doctor and told him what happened and reminded him of my osteo and he only looked politely interested and said, "celiacs usually have diarria, but if you feel better, don't eat glutin" and suggested no further testing." Based on that I decided to pay for Enterolab (even though I have serious reservations since they are not peer reviewed nor is there an independent test to verify their testing results) tests which are available without a doctor's order and to also remain glutin-free. I shipped the samples to Enterlab today so won't know their results for a while, not that it matters since the gluten-free diet made such a difference already.

Hope this rather long story helps.

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    • What does this result mean exactly?   Endomysial Abs, IgA Negative   Negative Transglutaminase IgA <2 U/mL 0 - 3 U/mL Negative 0 - 3
      Weak Positive 4 - 10
      Positive >10
      Tissue Transglutaminase (tTG) has been identified
      as the endomysial antigen. Studies have demonstr-
      ated that endomysial IgA antibodies have over 99%
      specificity for gluten sensitive enteropathy. Immunoglobulin A (IgA) 518 mg/dL 87 - 352 mg/dL
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