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[IP] Re: Celiac disease

Hi Pam,

My daughter with Type 1 also has celiac.  I first suspected celiac when she
was five years old as she had many symptoms including very erratic blood
sugars, but unfortunately either the doctor reading the result made a mistake
in interpreting the EMA test or else it was a false negative, but they said
she did NOT have celiac.  I asked for a repeat celiac screen a few years later
and this time the tTG blood test, which is the only one done where we now
live, was very positive.  Her tTG was greater than 100 (this is how they
reported it) where normal is zero to 20, and her gastro doc said she would
have had celiac all her life.  She was consuming only tiny amounts of wheat
when she had the tTG done, as she had decided several years earlier, around
the time of the first negative screen, that she did not want to consume any
wheat as it gave her a tummy ache and refused to eat almost everything with
wheat.  After her diagnosis, I had the entire family checked and it turned out
that my husband, her Dad, also had celiac.  His tTG was greater than 200.
Both were biopsied and confirmed.  My advice is that you should have the
biopsy to confirm things and to find out how much damage there is to your
intestine.  Then you will never question the diagnosis.

My son also had a gastric emptying test, but he doesn't have diabetes.  He ate
the radioactive scrambled eggs and could walk around between the xray times.
The results of this test showed normal emptying.  However, when he was
biopsied for celiac, the doctor found a lot of undigested food in his stomach
from 14 hours earlier, when they would have expected an empty stomach.  The
gastro doc couldn't really explain this, but my interpretation is that a test
of scrambled eggs on an empty stomach is not a very adequate real world
scenario.  Just something for you to consider.  My other son (non dm, non
celiac) also had a huge amount of undigested food found in his stomach at
biopsy, I figure with him why bother to have the gastric emptying study, I
already know that his food is not digesting as quickly as it should.

Best wishes,
Barbara, mum of Claire 12, dx'ed dm at age 2
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