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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 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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3 posts in this topic

I have ALWAYS had very bad flatulence and prone to diarrhea. About 3 years ago, I started having 6-8 floating bowel movements/day, diahrea, upset stomachs etc. A Celiac friend said it could be celiac, so I saw my GP who referred me to a GI specialist. My appointment was several months down the road, so she suggested I start following a gluten-free diet. I followed it for almost a year. In that time, my BM's got much less frequent and more 'normal' in other ways shall we say. I was still learning about the diet, so I don't believe I was completely gluten-free, but the more I restricted the intake, the more normal my BM's got.

When I finally saw the GI, she ordered all the blood tests, a gastroscopy,(which took place after a 6-week gluten challenge) and a colonoscopy. They all appeared normal. My family history includes: both a mother and father who had/have problems with constipation, diarrhea, EXTREME flatulence, hemerrhoids, and problems swallowing. One brother is borderline diabetes, one sister has rheumatoid arthritis, and lupus. She deals with severe constipation which she believes is totally due to her medication. My other sister has fibromyalgia. My other brother suffers from depression.

Both my children suffered from diarrhea when they were infants. My daughter was so underweight till the age of 12 that the dr. sent us to a dietitian to try to put some weight on her. She also now has BMs almost every time she goes and says she feels like there's a 'ball of dough' in her stomach when she eats certain glutens ie. pizza. She has started on a gluten-free diet and says she feels better and has more energy.

My question is this: Should I bother continuing to get a positive result from the GI's tests, or should we all just eat gluten-free and lay the diagnosis to rest? If the answer is yes to pursuing the + test results, why?

I appreciate your feedback and experience in this matter.

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Hi spchenier!!!

It sounds like Celiac/gluten sensitivity to me. To me improving on a gluten-free diet is a test but I know some others will disagree. The reason I say this is because you can have all the blood-work and biopsies out there but it does not always register positive or show the damage therefore our doctors quickly dismiss us. My GI doctor finally told me that if I wanted to go gluten-free to see if I improved that would be ok, since he had done a full work up on me and could only come up with IBS.

There is a test out there that is more sensitive than blood but not widely accepted my doctors, it is a stool panel test through Dr. Kenneth Fine at Enterolab This is how I was diagnosed, it is non-invasive, very simple and you get the results back quickly, usually within a couple of weeks.

I hope this helps you out

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I am currently struggling with the same issue. My 22 month old daughter is "most likely" Celiac. We started her on the gluten free diet prior to getting the tests done too. Her tests showed IgA deficiency so this made her tests negative. However, since IgA deficiency occurs most commonly in people with celiac or diabetes type 1 her GI was able to tell us with a high degree of certainty (based on other factors as well) that our daughter has celiac disease but can't put the "official diagnosis" on record until the endoscopy is done. The GI agreed that doing a gluten challenge for the sake of the endoscopy at this time was not wise as our daughter was seriously underweight and had finally been showing improvement.

Then my husband and I were tested and all our results came back negative (also still waiting on results for our 4 year old daughter). I am pretty certain at least one of us carries the gene if not both of us. I have many of the classic celiac disease signs (short stature, digestive problems, recurrent miscarriages, history of allergies and family history of gastro & autoimmune problems) and my husband has a nephew with Autism and a mother with Fibromyalgia. I was gluten free along with our youngest daughter and feeling much better but decided to get tested and gluten challenged myself. I'm feeling AWFUL... all for negative results (processed by Quest which I've now learned is not welltrained at processing these tests). Now I wonder if I should continue to pursue a positive result while I'm still ingesting gluten. I read a lot on this board about EnteroLabs and people getting better reliability with these tests. I'm not sure I am ready to pay out of pocket to learn that I should avoid something I know makes me feel bad anyway. I might opt to order just the gene test figuring if the gene is there that will be enough proof for me. As for my daughter, I don't plan to gluten challenge her ever. I know I did it to test but I can't see the rationale personally. She was very sick and I do not want to do her body harm for the sake of proving her villi is flattened by gluten. Her GI is very understanding and I'm sure will help us regardless of our choice to forego the endoscopy.

It is unfortunate that we should need to go to these extremes to get PROOF. I have been trying to ask myself what is my own motivation behind trying to get the PROOF. I think it has more to do with trying to boost my self-control (a recovering cookie addict here) and proving to my family that it is not in my head (and that they too could improve their own health) than actually having it medically documented. I've been doing a lot of research on the Paleolithic Diet and the foods our bodies are designed to digest. From what I've read, I am now convinced that grains (amongst other foods: potatoes, beans, and dairy) are not good for anyone regardless of an autoimmune response to them. My daughter is doing so well on this diet. It is very limiting (only meats, fish, vegetables, and fruit) but very satisfying once you get used to it. When I stopped trying to substitute the baked goodies with gluten free alternatives and took all grains of her menu her health improved drastically and she is now gaining weight steadily. I am already a bit panicked about when she is old enough for school. Right now she doesn't remember what a cookie tastes like and is not tempted with sitting next to someone eating one but in a class setting when there are parties, etc.... I am so hoping people will be more enlightened about the dangers of grains before she goes to school. My 4yr old eats gluten free at home but she does get the goodies at school (UGHHH). I feel mixed about what kind of results I'd like to see her get. While I don't want her to be celiac disease, again it feels no one will take my concerns seriously in the schools or medical offices otherwise. I would like her to be gluten free regardless of her diagnosis.

Oh this crazy world. Hopefully, the Low carb craze is here to stay and people will start asking WHY these foods are so bad for you and concern themselves more with TRUE health than with simply losing weight. And maybe..just maybe...we as adults will begin to question why we are still feeding our children foods that are causing adults to become seriously ill and overweight. Why are we setting them up like this? It'll be a long fight though...these foods are so addictive! Sorry for ranting...

Traci

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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