<<Disclaimer: Verify this information before applying it to your situation.>>

*One person wrote me that she found it was not celiac
after all*: When my daughter was dxd with CD, I was
absolutely sure I had it too. After all, my grandmother
had it and I had been suffering from IBS all my life. So I
got tested - and the serology was negative. I didn't
believe it. I was so convinced I had it that I had an
endoscopy done and my biopsies were still negative. It
turned out that my "celiac" symptoms were from soy and
when I eliminated soy (in all forms) from my diet my
symptoms went away. (This is not to say that there aren't
people out there who have CD and aren't diagnosed
properly. Just sharing my own experience.)
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*Thanks also to those who had info/opinions to share too*:
This girl needs a new doctor and a second opinion.....and
an endoscopy... in my opinion.....
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In situations as your student, I recommend that they have
Dr. Fine's testing. The should get the stool test and the
gene test. Some people won't do it because their
"insurance doesn't cover it" but hey, that is what money
is for. By avoiding the testing for that reason hurts only
the person that is sick and going to an MD that is not
helping...
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I believe you are on the right track. Maybe what you are
seeing (and the doctors aren't recognizing)..is GSS.
Gluten sensitivity syndrome prevents proper digestion
therefore causing disorders such as
bipolar/schizophrenia.... IBS is a blanket diagnosis to
cover any inconclusive abdominal/digestive disorder...
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I think I read somewhere a few years ago that the tests
are only 75% correct if negative. And of course the "gold
standard" biopsy can be wrong if read wrong or from the
wrong place. If you watch carefully you will see me
throwing my hands up.
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...you might find these interesting...
False Negative Serological Results Increase with Less
Severe Villous Atrophy
       Dig Dis Sci. 2004 Apr;49(4):546-50
Celiac.com 08/27/2004 - Dr. Peter Green and colleagues at
the Department of Medicine, Columbia University College of
Physicians and Surgeons, New York, New York, conducted a
study designed to determine the sensitivity of the various
serological tests used to diagnose celiac disease. To do
this they looked at 115 adults with biopsy-proven celiac
disease who fulfilled strict criteria which included
serological testing at the time of their diagnosis, and a
positive response to a gluten-free diet. Out of those
studied, 71% had total villous atrophy, and 29% had
partial villous atrophy.

Serological results indicated that only 77% of those with
total and 33% of those with partial villous atrophy
actually tested positive for celiac disease, and it did
not matter whether the patients presented with classical
or silent symptoms. All patients who were positive for
anti-tissue transglutaminase had total villous atrophy.

The researchers conclude: "Seronegative celiac disease
occurs. Endomysial antibody positivity correlates with
more severe villous atrophy and not mode of presentation
of celiac disease. Serologic tests, in clinical practice,
lack the sensitivity reported in the literature."
from www.celiac.com Copyright © 1995-2004Scott Adams

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