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

Thanks to all who sent their comments and experiences.

Reasons for negative biopsy--1. doctor doesn't take enough
biopsies, should be 6-8 or more.  2.  damage is too patchy
and 3.  pathologist may not be able to tell when there is
slight damage only severe.  Biopsies can be forwarded to
University of Maryland to Dr. Fasano, or to the Univ. of
Chicago, or Columbia University in NY.  You will be assured
of a better reading.  One person did respond and chose that
option and did get a positive reading.

One celiac's GI doctor said patchy areas could be missed
and if missed he would give patient the answer that biopsy
is negative.  Some people have positive blood tests and
negative biopsies but still go on the diet only to find out
they must be celiac as everything is much better.  Another
celiac's doctor said yes you can have positive blood tests
and negative biopsies but a child's GI doctor said it
doesn't happen very often.  Another told 20% of people with
symptoms have positive blood test and negative biopsy.  Key
is how a person feels after going off gluten.  

Some people that were borderline on blood test and had a
negative biopsy did test positive with stool testing by
Enterolab.

Of the 19 people that did respond personally with positive
blood test and negative biopsy, almost all went on the gf
diet anyway.  All felt better on the gf diet and most
doctors agreed for them to stay on it.  There was only one
exception with one younger person that had positive ttg and
negative biopsy that did not go on diet but will follow
with yearly ttg levels and if they go up, will do another
biopsy.  Another person had positive blood test and
negative biopsy but sent slides to Univ. of Maryland for
2nd opinion which was positive there.

Children's Hospital in Milwaukee tests kids in the diabetic
clinic for celiac and finding the 5% that research in other
countries suggests.  When they first started screenings
docs would find kids with positive antibodies but biopsies
were negative.  They left it up to parents whether or not
to start kids on gf diet.  Kids that opted not to go gf
(most of the time) were retested/biopsied a year later and
it was repeated the next year for those still negative.  By
the end of 2 years, all kids who initially had elevated
antibodies ended up with damaged guts.  Now parents of kids
with elevated antibodies are told "we caught it early and
start the gf diet now to prevent gi damage later." 
Abstract of this original study can be found at
Medline--The prevalence and clinical characteristics of
celiac disease in juvenile diabetes in Wisconsin.

A good place to read ins and outs of getting diagnosed was
provided as The Gluten File.  It is a compilation of
articles and abstracts about celiac disease and gluten
sensitivity.  http://jccglutenfree.googlepages.com/ also
glutensensitivity.net for more info.

In summary--It seems if most people have positive blood
tests regardless of a negative biopsy, they go on the gf
diet only to find their symptoms improve.  They feel the
blood tests are very accurate and proof is in how they
feel.

Thanks for all the great information.

Tammy


 
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