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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 Celiac.com's FREE weekly eNewsletter   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
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CeliacMommaX2

TTG levels "negative" but still 14

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My daughter's TTG levels were elevated for 2 years, then she hit 14 (<15 is negative), then went back up to 24.  Her EMA is negative.  I just saw the article "Can Undetectable Negative Tissue Transglutaminase IgA antibodies Predict Mucosal Healing in Treated Celiac Disease Patients?" and am all worried again about her.  Does this mean she's not healing?  We are above super strict, gluten free household, keep her in a bubble and don't know why her TTG is elevated.  Her doctor is not concerned, so I am trying not to be, but I want me little girl to be healthy!

Anyone else have any thoughts on this?  Thanks!

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I would not fret.   Has she improved?  That is what counts.  In my research, celiac experts have published studies that indicate that the DGP is a better indication of dietary compliance.  Some say the TTG is useful.  Some say that the celiac tests should only be used for diagnostic reasons and not compliance.  The reality is that not much research has been done to check for dietary compliance.  They are focusing on a cure or better treatment (medication).  Heck, they are just trying to get more celiacs identified (80% of celiac don’t even know they have it).  

I think you are all doing a great job.  Her TTG came down and that is good news!  

Edited by cyclinglady

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I agree with cyclinglady.  

My daughter has had elevated ttg number for 3+ years now.   We are also a gluten free family.   My household went gluten free as soon as she was diagnosed.  My daughter's ttg has came down dramatically over the years, but we never quite hit the below range (We came SUPER close with one of our tests).  

Our doctor is not concerned.   She even thinks that her ttg is perhaps falsely elevated.   My daughter is doing well, she is growing.   Taller than me now.  So, I give up worrying about that ttg number a while back.   (I was rather obsessed about it for a while myself.   We worked so hard on this diet, and deserve an excellent grade for it!!)

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