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I was gathering all my medical records recently to find out the following.
One of the Celiac blood tests, the anti-endomysial test, was reported to me
as negative by both my allergist and Gastroenterologist only to find out
that the test was never performed.  My allergist told me that she thought
the anti-endomysial and tissue transglutaminase were the same test when she
read the results of the tissue transglutaminase test.  Although, she ordered
all the tests including the anti-gliadin test last October, Quest
Diagnostics-Nichols which did the tests substituted tissue transglutaminase
for anti-endomysial and didn't inform my allergist.  Then, my allergist made
the error of thinking they were the same test. Finally, my hospital records
reported the results for the tissue transglutaminase test directly under the
name of the anti-endomysial test title;  With this confusion in records, my
Gastroenterologist misread negative results for both tests.
From this point on, the tone was set. During my horrible journey to get
diagnosed, I endured 3 gluten challenges with the doubt cast by negative
Celiac blood tests over my head as well as my Gastroenterologist's head.  At
the international Digestive Disease Week conference I attended in May, one
of the major points was that other doctors in addition to
Gastroenterologists have to have a greater awareness of Celiac Disease.
This experience with the blood test records is one example of the lack of
knowledge among even specialists like my allergist who didn't even know that
the tissue transglutaminase test and anti-endomysial antibody tests were
different tests.  This adds only insult to the injury further done by the
gluten challenges.
P.S.  My allergist offered to redo the anti-endomysial test which most of us
know wouldn't be applicable after 6 months on a strict gluten-free diet.

Laura




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