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.
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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
Where can I buy gluten-free stuff?
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The reason they set the limit at 20ppms is that through scientific study, they have proven that the vast majority of people with Celiac Disease do not have an autoimmune reaction to amounts below that......it is a safe limit for most. Also, just because that limit is set at 20ppms, does not mean that gluten-free products contain that amount of gluten. Testing for lower levels becomes more expensive with each increment down closer to 0-5ppms, which translates into higher priced products. Unless you eat a lot of processed gluten-free food, which can have a cumulative affect for some, most people do well with the 20ppm limit.
I'm in the Houston area so I'm assuming there are plenty of specialists around, though finding one that accepts my insurance might be hard. This might sound dumb, but do I search for a celiac specialist?? I'm so new to this and want to feel confident in what is/isn't wrong with my daughter. I'm with you on trusting the specialist to know the current research.
Thats sounds like a good plan.
Would it help to know that a frustrating experience in seeking diagnosis isn't unusual With your IGG result I'm sure a part of you is still wondering if they are right to exclude celiac. I know just how you feel as I too had a negative biopsy, but by then a gluten challenge had already established how severely it affected me. So I was convinced I would be found to be celiac and in a funny way disappointed not to get the 'official' stamp of approval.
Testing isnt perfect, you've already learned of the incomplete celiac tests offered by some organisations and the biopsy itself can only see so much. If you react positively to the gluten free diet it may mean you're celiac but not yet showing damage in a place they've checked, or it may be that you're non celiac gluten sensitive, which is a label that for a different but perhaps related condition which has only recently been recognised and for which research is still very much underway.
We may not be able to say which but the good news is all of your symptoms:
were also mine and they all resolved with the gluten free diet.
So don't despair, you may still have found your answer, it just may be a bit wordier than celiac! Keep a journal when you're on the diet, it may help you track down your own answers.
Best of luck!
Run to the nearest celiac disease specialty center if you can. Especially with conflicting doc opinions. Where do you live? Honestly, I test positive to only the DGP and the newest research on its specificity is a mixed bag. My recent scope did not show "active" celiac disease but only a slight increase in IELs.
I am waiting for my post biopsy appointment with the Celiac specialist next month. But I've been through a couple of GI'S locally and honestly I feel it was definitely worth going to a specialist. Especially when you have some positive blood work but a normal biopsy the doctors really go back and Forth on diagnosis and never really know for certain. Unfortunately given the above I just said I probably still do not know for certain. Sigh. But I trust the specialist to be at the top of his game on the research and at least I can feel confident and comfortable in what his opinion may be next month.