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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.

How Many Times Did Your Kid Test Neg Before Pos?
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6 posts in this topic

My oldest had his first test at 18 months and then had three additional negative tests (yearly) before testing positive at 5 1/2.  My daughter tested negative three times before testing positive last week at 4 1/2.  My two littlest have so far tested negative three times, so I guess we are just waiting to see now!

 

Did/does anyone else test yearly?  My oldest had unusual symptoms, so we didn't figure out what was going on quickly.  My daughter, though, had the same symptoms her big brother had, so we just knew and expected her test to be positive.  So far, the younger two have no symptoms, but we keep wondering and waiting.

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I haven't tested my daughter yet.  Have you read any of the "The Patent Celiac" blogs on this forum?  They are written by Jebby who's a Pediatrician and has four small children.   Here's one about testing:

 

http://www.celiac.com/gluten-free/blog/1038/entry-1849-should-your-kids-be-screened-for-celiac-disease/

 

Read them all!  

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I haven't.  I've never heard of her before.  I read the testing one just now.  My kids had none of those symptoms (they presented rather unusually and with my first, we didn't even realize they were symptoms for months.  My second had the same, so we knew).  My husband is, though, so that's why we do it yearly.

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None.  She tested positive straight up but was 7 before I realised what was wrong.  Before that I had people telling me that it was my fault she was sick all the time.  My mum was not very nice about it, telling me that even though I thought the house was clean, it can't be cleaned good enough (I hired a professional cleaner for a $400 bond clean a number of times thinking I sucked at cleaning but she still got sick) so because the focus was always on what I must be doing wrong, it took a while to see that it was something else.

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My three boys tested negative last year (doctors would only do the tTG IgA) but because I have celiac disease, and two of my boys have some pretty obvious symptoms, we made our house gluten-free anyway. I'm glad I did because they are doing MUCH better now even though they never tested positive.

 

I'm of the opinion that if celiac disease is in the family, and someone has symptoms, then why wait to go gluten-free? The gluten-free diet can't hurt a child and often forces us parents to feed our children better because of the high cost (and sugar content) of gluten-free substitute foods.

 

Just my opinion though.  :)

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My two youngest tested negative, as did I. We had only been eating one slice of bread a day though for 2 weeks, so not sure if that was why, but my 6 year old came back very positive on that. With my youngest two, they also have low IgA, so we were told that a negative Celiacs test could be false because their low IgA could mess the test up. Stool tests have shown that they both have very bad guts, and some of the results with my youngest at 18 months, were indicative of Celiacs. The whole house is gluten-free, it just seems the responsible thing to do.

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