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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.

Re-Doing Bloodtest 3 Years Later?
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7 posts in this topic

My daughter is now 5 1/2 and I have suspicions of celiac disease. My mother has it, and I have "suspected" celiac and have been 100% gluten free for a year and half. My daughter was tested at 2 years old due to family history and her small size, but the bloodwork was negative.

She is still extremely small for her age, maybe moreso now than she'd been at 2. She has phases of diahrea, but then it always passes. She complains of tummy pain, but it always passes, lethargy at times.... She's not "sick" like my mom and I were, but I always question it with her...

If her bloodtest was negative 3 years ago, is it worth redoing? Can it change?

Thanks for you help!

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Has your daughter been on a gluten free diet with you?

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No. I'm the only one in the house. So, the test should be accurate....as accurate as they are, anyways!

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It couldn't hurt to do so.

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If a fist degree relative is + it is suggested that a person get tested/retested every 3-5 years OR if/when symptoms present. Also, blood tests in kids can often be off. I would absolutely retest.

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My youngest son and I both have celiac. We were told to test my other son every two years, or sooner if symptoms develop. While this sounds simple enough, my younger son had almost zero symptoms when he was diagnosed. Our only clue was a drastic change in behavior. My older son is 10 and due for his "check up test" next week. It is hard to know if he has symptoms or it is just "normal" for him. (he is growing slower than younger son, has moody outbursts, occasional tummy trouble, etc.) Everything could be perfectly fine but it is natural to suspect gluten. Continuing to test him will (hopefully) put my mind at ease.

ODS did have an endoscopy, even though his original blood tests were negative and he had almost no symptoms just because he had some weird issues with his tooth enamel. Kids (and adults) can have it with no symptoms at all - and blood tests are frequently wrong. Everything came back normal so he has continued to eat gluten for the past two years (less than before, since I cook gluten free, but still has some daily.)

I would do three things:

First check to see that she got the full panel of tests three years ago. Just knowing the "bloodwork was negative" does not really give you the full picture. (Both my sister and brother had "negative bloodwork" and were told they do not have a problem. When I asked them what tests were done, they both only had the TTG IgA test done. Not the complete panel. They continue to eat gluten based on this and they both have classic symptoms of intolerance.) You may find that her original tests were not done fully, and/or that her levels were on the high side.

Second: get a new blood panel done. Celiac Disease can be triggered at any time in your life so maybe she didn't have it then, but does have it now. Or, maybe her antibody levels were not high enough three years ago to be detected, but they are now. You can also compare the two tests to see if the levels are going up or staying the same.

Third: after I was sure the complete panel was done, I would try out the gluten-free diet and see how she responds. I would try the diet even if all the tests come back negative.

We thought our son only had a behavior response to gluten. That improved immediately once it was removed. Over time we noticed other things. He shot up three inches in the first month, he sleeps better, his skin is better, no more dark circles under his eyes, his hair even got thicker suddenly. He is like a new kid.

Now, if he accidently get gluten, he is sick for days. The behavior comes back, but so do stomach cramps, and other classic symptoms.

Cara

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My symptoms were just like your daughter's, they would come and go but were usually at their worst in the evenings. I would get her checked.

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