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Date: | Fri, 10 Feb 1995 12:18:33 EST |
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<<Disclaimer: Verify this information before applying it to your situation.>>
First my question:
Does anybody have any reccomendations for a laboratory doing the
antigliadin antibody tests? And while I'm asking...any recommendations
for a 'celiac aware' gastroenterologist in the New York metropolitan
area (besides the group at Valhalla)?
Now the long winded explanation:
Our oldest daughter(now 6) was diagnosed with celiac at age 3.5 after
not growing or gaining weight for almost a year. Because she was a
tremendous baby (10lbs 6oz) and grew rapidly even at her sickest she
was still bigger than most kids her age. Her symptoms were so classic
that we actually made the diagnosis ourselves from a table of symptoms
in a medical book. However not wishing to gamble with our daughter's
health we sought medical opinion. (This of course was after we had been
to 6 different pediatricians who all said it was intestinal flu that
would clear up in a week or so). We spent a week in hell after a
nuerologist upon a cursory examination said "It's probably cystic
fribrosis, we'll do some tests" and then left the room without further
explanation.
Fortunately the gastroenterologist in the same group wanted to test for
celiac and suggested the biopsy and blood test. We foolishly went
ahead with the biopsy before the positive blood test came back. We
were also told our daughter would be asleep during the procedure--until
five minutes before it started--they said she had to be awake for her
gag reflex to function. At this point they showed us the non sterile
instrument of torture they were going to put down her throat. Well the
good news is that the biopsy was positive (only to confirm the blood
results which we were told about weeks later when we 'asked") and the
gluten free diet has worked perfectly.
About the same time our younger daughter (by 18 months) began having
loose stools. Not wanting to put her through the same nightmare we
immediately put her on the GF diet with her sister. We told the GE
about what we had done and he suggested a blood test. Only after it
came back negative did he inform us that being GF this was the expected
result!!! Years passed and when our younger daughter was to start
kindergarten we decided in fairness to her it was time to find out for
sure. Last June we started her on a gluten diet and 2.5months later
did another blood test. It was negative and since then she has
continued to gain weight and grow. However in the last month she has
been complaining about vague stomach pains (that actually wake her up
at night). In an uncanny coincidence she has also been craving her
sister's GF food. So we want to repeat the blood test (and want to
avoid the biopsy like the plague). Recent posts about test reilability
and the difficulty of diagnosis have got us thinking.
There have been so many stories already posted here that I feel we
could have written from our own experience--that I apologize if it
seems we're sounding the same tune over and over. But it's a great
comfort knowing that others are going through the same thing and look
forward to any advice offered in reply.
Joe Zaccardi
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