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Thanks to all list members for their thoughts and advice over the past
month.  I am taking my daughter to Children's Hospital (Boston) on Friday to
a Gastroenterolgist.  No biopsy has been scheduled quite yet.  Below are the
details of her situation.  I want to be prepared as possible for this
appointment.  Does anyone have any additional suggestions as to what to
request/expect from this appointment?

Here is the brief history:

We have just found out that my 14 month daughter (16.5LBS) has had a
bloodwork response that seems to suggest celiac disease. (She was tested
because of inability to gain weight) The test done was Anti-Endomysial (EMA)
IgA. Our pediatrician suggests that It's results were intermediately
elevated. Our pediatrician says that so far we do not know if she has celiac
and we will go see a specialist. He suggests that there may just be
allergies to wheat and milk.  She had positive antibody rasp results to both
of those.  Additionally the doctor says that she specifically has a milk
allergy, she is not lactose intolerant so it is not related to the current
situation. She has been dairy free for 2 + months.  The total IGA serum was
8 compared to a cited normal range of 13-127 which suggests a deficiency, I
believe.  SO from what I understand between this and the fact that she is 14
months, the Transglutamine Antibody result is basically meaningless.  The
result was 1.3 against a cited normal range of 0-19.  I am not even sure
that these test results suggest celiac disease.  I do not want to hesitate
and I want to get a firm diagnosis, but it is all so overwhelming, and
opinions seem to vary.  I think her given allergy situation could possibly
confuse the issue, at least it does for my wife and myself.  I understand
that the next step might be to have a biopsy to check for damage to the
villi, but I am told damage could occur because of the milk allergy?  If we
proceed with the biopsy (which raises additional concerns), we are unsure if
the lab will be able to differentiate and make a specific diagnosis?  I also
understand a negative biopsy does not rule out celiac.

Regards,

John in MA

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