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Subject:
From:
Debbie Collins <[log in to unmask]>
Date:
Tue, 26 Dec 2000 10:24:28 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thank you all for your responses. 19 people responded in all.  My son
was "full of gluten"  for his biopsy and did not start a GF diet until
after the endoscopy.  It was then that he was symptom free for the first
time in 10 years.

 The general consensus was that 4 biopsies were not enough, there can be
false negatives on blood work, that not all labs and physicians are
experienced enough to diagnose this disease, and the best proof is that
the diet relieves symptoms.  It does seem that people have varied
understanding and interchange the words "intolerance, allergy and CD."

Summary-

One person had gone to an international conference on CD in Baltimore
and had learned all the latest, including the fact that 8-10 biopsies
are recommended.  Many said lot of pathologists are not well versed in
reading a biopsy for damaged villi from celiac disease. Several said I
could obtain the slides and send them to University of Maryland for Dr.
Fasano to look at. One person said the celiac experts suggest 12 to 20
samples. False negatives in both the blood work and the biopsy are
rampant, from 20 to 50 percent depending on whether he had been at all
GF before the tests, the doc who did the testing, and the lab the tests
were sent to.  One man sent me a detailed list of labs that were
competent.  I can forward it it anyone who wants this.

Apparently Dr. Fine says this: Gluten sensitive enteropathy, or gluten
intolerance is analagous to having 50% block arteries and a history of
heart disease.  Celiac is like having the full blown heart attack with
the damage already done.  So, he said it is up to you if you are not at
the celiac stage in your intestines yet. Sounds like your son is in the
50% blocked artery stage.  Just because he hasn't had sufficient damage
yet doesn't mean he won't if he doesn't stop ingesting these gliadin
proteins.  Since his symptoms stopped on the gluten-free diet, he should
just stay away from gluten. (who is Dr. Fine and what is his expertise?
I am curious.)

This site gave a good description of wheat allergy which is very
different. http://www.intelihealth.com/IH/ihtIH/WSIHW000/7945/24481/
286178.html?d== dmtContent

This site described an intolerance as the body's inability to process a
food source. http://www.intelihealth.com/IH/ihtIH/WSIHW000/7945/24481/
286178.html?d== dmtContent

Celiac Sprue is an intolerance perhaps, but more than that, it is an
auto immune disease in which the small intestine suffers damage, because
of this intolerance, unlike lactose intolerance.

You may want to have the biopsy slides re-evaluated by a celiac
expert...Dr. Fasano or Dr. Joseph Murray at Mayo come to mind.  The
new information says to take up to a dozen samples when doing the
biopsy, so 4 in not really that many.  In addition to the villi damage,
there are changes that take place in the crypts, the "valleys" so to
speak between the villi where new villi are grown.

A good support group is vital and can help find doctors that are
experienced in diagnosing.

Thank you all for your response.

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