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From:
William Elkus <[log in to unmask]>
Date:
Sat, 11 Feb 1995 03:00:30 GMT
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<<Disclaimer:  Verify this information before applying it to your situation.>>

A number of you have commented about your concern about antibody
testing reliability.  I have heard Elaine Monarch at the Celiac Disease
Foundation (CDF) comment that while there is spotty reliability in labs
which do not perform this test regularily, that there are some very
good labs which can be trusted.

I hope that the Celiac physicians on the list will be able to post the
names and phone numbers of the labs which they regularily use for this
test.  While it is inevitable that there may be some false positives
and false negatives (Joe Murray just posted a great summary on this a
few days ago), we could at least use labs which minimize the errors.

In Los Angeles, many people use Specialty Labs  (310) 828-6543.  I do
not have the professional knowledge necessary to recommend them over
any other lab.  The main reason I know about them is that my son's G/I
uses them exclusively for this test.

Dr. Betty Bernard and Elaine Monarch have negotiated a reduced fee for
CDF members of $75 for those who walk into the lab and pay in advance.
Specify test code #1076 and CDF account identification code #36121.  If
your doctor draws the blood and ships it to Specialty, they charge $155
but then you have the chance of getting insurance reimbursement.

The following is excerpted from the Spring 1994 CDF newsletter's
summary of a speech given to CDF members by Herminio Reyes PhD,
Director of Medical Publications and Marketing for Specialty Labs:

"Symptomatic or Active CD represents only 30% of the gluten sensitivity
disease spectrum.  There is also Potential CD, Latent CD and Silent CD.
Symptomatic CD has the most severe symptoms and abnormal pathology.
First degree relatives are potential celiacs, latent celiacs include DH
patients, people with no symptoms of CD on a gluten containing diet and
those who become antibody-positive with gluten challenge.  Silent CD
can be someone with no symptoms but whose antibodies ... are elevated.
...."

"Based on a study of 340 proven Celiacs, if tests for IgG gliadin
antibodies, IgA gliadin antibodies and IgA endomysial antibodies are
(all) positive, there is a 99.3% chance that you have the disease (a
high positive predictive value).  If all three tests are negative,
there is a high negative predictive value for the absence of the
disease of 99.6%."

"..for the 1537 patients tested at Specialty Labs in 1993 (presumably
because of either the doctor's suspicion of Celiac or desire to rule
that out), 1192 or 78% were negative for all of the antibodies, 4% were
positive for all of them....14% that had only IgG antigliadin, 12% that
had only IgA anti-reticulin antibodies, 10% that had only IgA
endomysial antibodies, 6% that had only IgA anti-reticulin antibodies,
and then there were other smaller percentages that were positive for a
combination.  Note that looking only at gliadin antibodies would miss
16%.  IgA gliadin antibodies increase or decrease in response to the
presence of the absence of gliadin a lot more quickly than the IgG
gliadin antibodies."

Bill Elkus

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