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From:
Megan Tichy <[log in to unmask]>
Reply To:
Megan Tichy <[log in to unmask]>
Date:
Fri, 15 Jul 2005 12:56:37 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Do you know of anyone who is sure they have celiac
disease, but the bloodwork came back negative?

I was doing some research today and found a very
interesting "clinical review" published April 2005 in BMJ.
It is entitled "Lesson of the week: Antibody negative
coeliac disease presenting in elderly people - an easily
missed diagnosis".

This article *MUST* get into the hands of more doctors.

My PCP, for example, tested one of my students for celiac,
and the bloodwork came back negative. He put her on meds
for bipolar and schizophrenia, and will not consider
celiac because "the serology tests are >98% accurate" --
can you believe that?

Guess what he is "leaning towards" ??? ... IBS.

She is ~100 lbs and throws up everything she eats, has
osteoarthritis, ADD, fatigue, stomach cramps... she has a
celiac cousin... and I think her bloodwork is negative
because she is bulemic.

Let me explain: Her food never reaches her intestines to
set off the autoimmune response. As Dr. Kenneth Fine
(Gastroenterologist, Baylor Univ. Med. Ctr, Dallas, and
Dallas VA Med. Ctr. ...Dr. Fine is Medical Advisor for the
Dallas/Fort Worth Chapter of CSA) points out, the reaction
starts in the intestines, then you get "leaky gut", *then*
you can detect the antibodies in the bloodstream.

I think that when only trace gluten is allowed into the
intestines (as in bulemia or anorexia, or even someone who
sub-consciously avoids gluten as I did for many years) it
allows for the full range of symptoms (a systemic
response) without the ability to detect bulk antibody
accumulation in the bloodstream.

But I found no support for this theory of mine ...other
than some of Dr. Fine's excellent work.

The article I mention above, however, clearly states that
"negative serology should not necessarily reassure the
clinician" and uses a 79 yr old man as the case-in-point.

But this negative antibody profile is much more common
than just <2% of all celiacs, which is what my PCP is
trying to tell his patients by saying that the test
detects >98% of all celiac cases.

Endomysial antibody testing is >90% *specific* for celiac
disease. Doctors need to get it through their heads that
*specific* does *not* equal *sensitive*.

Megan Tichy, Ph.D.
Texas A&M University
College Station ,TX

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