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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.

Self Diagnosed...now What?
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5 posts in this topic

I stopped eating wheat products last August at the suggestion of a friend and felt much better. My blood tests in September though were "inconclusive" according to the MD. I have not seen the actual reports. After seeing the GI for a pre-endoscopy appt, I was told I'd have to go back to gluten for 4-6 weeks. I only made it two days before I was in such pain I went back to a gluten-free diet. Now that I've discovered gluten sensitivity though, I'm wondering if there are other tests I should have, or dietary supplements I should be taking? Is it OK to just acknowledge g sensitivity or do I need to pursue positive testing for celiac? From reading this forum, it seems that I should be asking someone for a bone density test. Which kind of MD do I go to for that? My own MD asked me which blood tests they needed to perform... didn't make me feel very confident.

Thanks!

Lori

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No one every said that you need a doctor to tell you that you should avoid something. If you have a diet that is working for you and you are feeling good on it than just go with it and don't worry about a dx unless you need one for another reason.

If you want a dx, (I don't blame you if you do) You could do the enterolab stool test which says it is sensitive enough to pick up gluten even after it has been eliminiated some times for up to 2 years. There website is www.enterolab.com It is none invasive and a test you do at home and then send it back to them. I would recommend the gene test and stool test. If the stool test comes up clear it may be because you have been gluten-free. But if the gene test shows that you have the gene that Celiacs have then you can know that you are probably gluten senstive from how you were before going gluten-free.

Another thing to note is some doctors dx celiac disease by using a gluten challenge, which sounds like you did and are sensitive.

By the way, your doctor may not know very much about celiac disease, but be happy he was willing to ask what tests you need. A lot of doctors won't even admit they don't know something like that. The blood tests probably won't show anything because you have been gluten-free to long.

Hope this helps :)

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I've opted not to go any further than dietary challenge. And due to the few occasions where I have gotten "glutened", I've come to recognize the response my body has (it's different the first time, as opposed to how I am if I constantly eat gluten... it's an interesting pattern), so I'm comfortable with a dietary challenge having determined this. And my GP is willing to take it as a confirmation as well. Some of my other doctors are more skeptical, but I don't really care, as it's up to me to manage it, not necessarily my asthma doc or the like.

I'm not sure about other tests, as I haven't looked into it as much as I should...

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I agree with Tiffany. My doctor accepted the dietary challenge, now it is up to me to eat right for me. Even if my doctor had not accepted it, the outcome would have been the same. I had already changed my diet, was feeling better, and refuse to go back.

So, Now What? Now eat right for your body, and take care of yourself.

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Thanks for the reinforcement folks - I guess I'll just continue on my road of trying to learn a little more every day. This site certainly helps with that! Last night I printed a list of gluten-free products that I found here...Wow! 42 pages of food that I CAN eat :P

Blessed be,

Lori

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