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Subject:
From:
Joanne E Hameister <[log in to unmask]>
Date:
Sun, 7 Nov 1999 19:18:15 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

I feel obliged to jump into this discussion.  But not to address the
issue of whether or not one is diagnosed with a biopsy or serology or is
self-diagnosed.  If you feel better without gluten, stay away from it.

HOWEVER,
I worry about the accuracy of all the incidence and gentic testing that
is going on and attendant efficacy that the researchers are trying to
establish for the diagnostic methods.  If someone has gone gluten-free
without the benefit of a positive result from one of the diagnostic tests
and if this someone participates in one of the incidence tests, the
researchers have *got to know* he/she has been gluten-free; otherwise,
he/she shows up as a non-celiac as far as the tests are concerned.  If,
on the other hand, he/she is truly a celiac, he/she is missed in the
incidence. The researchers must be given this information and afforded
the opportunity to decide how to handle the data from such a particular
case.

It is a double-edged sword at this point.  Doctors are trying to (1)
establish a good handle on incidence and (2) promote earlier use of
diagnostic methods, particularly the non-invasive serology.  But we have
to have defensible numbers that describe the incidence of the disease
and, from those numbers, we have to have reliable numbers to prove an
accurate diagnosis.

Joanne Hameister

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