Confused

[shjames]

Hi,

I searched the postings for an answer to my questions, but I'm still confused, so forgive me if these questions have already been answered. My dd was tested (serological) for gluten sensitivity, and all the results came back negative--non detectable levels, in fact. She was also tested at Enterolab for gluten, milk sensitivity and genetic markers through their stool test. Naturally, those tests were completely opposite in the results! She tested positive on the antibodies, and also positive for casein sensitivity, in addition to posessing the genetic predisposition (HLA-DQ2) for gluten intolerance. Here are my questions:

1. is it possible to test + for casein when you've been dairy free? My dd has been off all casein/whey and dairy for 11/2 yrs. and yet still tested +

2. what % of people with the gene will actually develop celiac disease--and if she doesn't have it now, should we retest every year?

3. finally.....I'm not sure which test results to believe--the blood or the stool. I don't want to damage my daughter by not treating her gluten intolerance if she truly has it, but the gluten-free diet is very restrictive. I definitely don't want to undertake it lightly (she's only 6 yo). Advice or comments would be greatly appreciated because we're not sure what to believe at this point.

Thanks for your time,

Shelly

[tarnalberry]

There isn't a lot of published research on the accuracy and reliability of the stool tests, so there isn't a good answer for your questions. It is known, however, that blood tests can certainly be negative - it particularly depends on which ones she had done.

As for the diet - the big question is: Does she FEEL BETTER on the diet? At the end of the day, THAT is the most important test. The diet need not be restrictive, actually; many of us have probably tried a number of new things that we would never have tried before otherwise! :-) But it takes time and practice to get it that way.