My 2 yo dd (the one rolling and tumbling in my siggy :) ) has been diagnosed with a few things thus far: hearing impaired, developmentally delayed, celiac disease, and possible down syndrome (no insurance no even medicaid... long story) Ok, so what I want to know is what you think of this:
The blood test (i'm not sure which one) for celiac came back positive. The other day her former doctor called to say that the manufacturer messed up and the test had a chemical that causes false positives. Ok, dd definitely has gluten intolerance, I know when she has had so much as a lick of a cookie, and being a busy 2 yo that happens more than I like to think about. Should I bother having her retested (the manufacturer will pay for it) or wait until we do the genetic testing and take the extra vial then or just not worry about it since I know she has the intolerance?? I'm just confused.
A bit more background, we didn't do an intestinal biopsy because the blood test was positive. I'm not sure i would do that on her since she is always in so much pain and that seems like recovery would be painful.
loss 2/28/03 ds 1/5/08 dd 2/8/10
When we know better, we do better. ~Maya Angelou
If she's been gluten-free for a while, she won't show positive on a celiac test even if she actually has the condition. That's because the test looks for the antibodies your body produces in response to gluten ingestion. No gluten = no antibodies. The only way to test her in these circumstances is to put her back on gluten for what's called a "gluten challenge" -- several months of gluten several times each day (see: What's Involved in a Gluten Challenge?). Many parents choose not to do this, since their children's reactions are so bad to even trace amounts of gluten.
The genetic test doesn't require her to consume gluten to be accurate, so it might be a good compromise (see: Celiac Disease Genetic Testing). She might also have non-celiac gluten sensitivity, which can have symptoms and damage just as bad as celiac disease (see: Gluten Sensitivity - What You Should Know).
Good luck -- it's a tough decision either way.
Jane Anderson, About.com Guide to Celiac Disease
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