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It is important for any parent worrying about Celiac disease in their children
to realize that the blood tests to screen for it are not 100 percent accurate.
They will miss a considerable number of celiac kids.  My daughter was one of
them the first time she was tested; her celiac wasn't picked up until over
four years after her symptoms were very obvious, with the result that lots of
damage was done to her body.

Here is just one of many peer-reviewed academic articles talking about this:


Also, if the blood work is positive (EMA test or tTg) it is pretty much
guaranteed that a child has celiac, even if the biopsy initially comes back
negative.  The damage to the intestine is patchy, and if insufficient biopsy
samples are taken, they might miss a damaged area.  Also, sometimes the sample
needs to be re-examined.  I know of one parent whose child's biopsy was
initially labelled as okay--the doctor asked for the sample to be re-examined
and the result was then changed to a positive diagnosis.

Barbara, Mum of Claire 10
dx'ed dm age 2, celiac (finally) age 9
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