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Thank you to everyone for the many valuable responses and personal stories
I received.  Your advice has helped encourage me tremendously to take the
steps I feel are necessary in order to insure that my children’s tests are
done as accurately as possible.

Most everyone who wrote me said that it is important for all first degree
relatives to be tested and to NOT wait for symptoms to appear.  Many had
experiences where the person being tested had either no symptoms or minor
symptoms.  One person said in their experience “there are many subtle
symptoms and varying degrees of CD – many who ultimately tested positive
had no GI symptoms.”  Another wrote that some in their family had no
symptoms, but when they were biopsied after positive bloodwork, their
villi were damaged.

More than once I have been told that the Total Serum IgA is important
because some Celiac’s are IgA deficient and if that test is not done,
their results could be a false negative.  Some people have not had the
whole panel done and felt confident in the results.

Prometheus Labs – many who wrote felt that Prometheus Labs is the best way
to go.  I have even heard more than once that they are the most effective
and knowledgeable lab in the country when it comes to blood testing for
Celiac.  They test for the entire Celiac panel which includes:
Angti-Gliadin IgA
Anti-Gliadin IgG,
Anti-Endomysial (EMA) IgA,
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA

If you do something called CeliaPlus, Prometheus will do the above Celiac
serology, and, if the results are negative, they will follow-up with the
genetic test so you will know whether or not Celiac could still develop.
I was told that the serology only is $290 and the serology plus genetic
test is $730.  Prometheus will submit to your insurance if you provide
them with the information, however, at this time, I am not sure how much
of the testing will be covered by my insurance.  I received enough info
that supported my feelings that Prometheus was the way to go and at that
point I just went ahead and ordered the tests.  I am sure you could find
out ahead of time what your coverage would be.

I was told that I would need a doctor's written order to take to a lab.
The lab will draw the blood and send it to Prometheus for testing. If your
doctor is not familiar with sending testing to them, Prometheus will ship
you their specimen transport boxes at no charge.  They can look up for you
what hospitals in your area are familiar with shipping to Prometheus.  I
live in a small town, and although my hospital has not done this before, I
called and spoke with them and they have been more than happy to
accommodate the request.  There will be a blood drawing fee, but I am not
sure yet how much that will be.  One lab told me $20, the hospital has not
given me a figure yet.

Their website is www.prometheuslabs.com and has some detailed info about
the Celiac Disease Serology.

The lady from Prometheus who has helped me with all this is Kathy Strahorn
and her e-mail address is [log in to unmask]  I did everything
through e-mail and received prompt responses from her.  She was very
helpful and answered all my questions and explained exactly what I need to
do and what the lab needs to do.  Please feel free to contact her if you
have any questions or would like to order the kits for testing.  My kits
arrived yesterday and I am set to have their blood drawn on Thursday.

If you live in the DC area, two people there have been helped by another
Prometheus representative Jennifer Swalwell at
[log in to unmask]  I started to contact her, but had already
sent an e-mail via the Prometheus website and that was answered by Kathy.

Enterolab
A few people have used Enterolab in order to check for a sensitivity to
gluten, however, I was told it would only show a sensitivity to gluten and
not actually Celiac (you may need to verify that in case I
misunderstood).  One person warned that the doctors did not accept the
Enterolab results they had received.  Their website is www.enterolab.com
and you can find detailed information about testing and pricing as well as
read a very interesting article by Dr. Fine, “Early Diagnosis of Gluten
Sensitivity:  Before the Villi are Gone.”

Kimball Genetics
One person suggested using Kimball Genetics for testing if I were paying
out of pocket, but I did not research them since I had decided to go with
Prometheus at that time.

Research Study
One person told me about a research study where if 2 or more first degree
relatives have been biopsy diagnosed with Celiac, the stuffy will do blood
tests for free.  The tests they do are IgA tissue transglutaminase, IgA
endomysial antibodies, and Serum IgA.  You can contact them at:
University of California, Irvine; 224 Irvine Hall; Irvine, CA 92697-7550
phone number 1-866-956-9662

Please feel free to contact me if you have any questions.  I will post
again in a few weeks to let everyone know how the Prometheus experience
went and to let you know the test results.  Thank you, again to all who
wrote!!!

LISA in Wilkesboro

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *