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Subject:
From:
Barbara Emch <[log in to unmask]>
Date:
Fri, 7 Jan 2000 20:54:01 EST
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi Everyone,

I would like to relate my experience regarding having my son tested
genetically to determine if he had the potential to develop Celiac disease in
the future.

What helped me the most with reaching this goal was an ad in Ann Whelan's
Gluten Free Newsletter for Specialty Laboratories in California and they had
the Celiac Disease GenotypR test (#1078) listed.  In addition they had the
Celiac Disease EvaluatR (#1077) which includes Transglutaminase IgA
autoantibodies, IgG & IgA gliadin antibodies, IgA endomysial autoantibodies,
and IgA reticulin autoantibodies.

Before even considering the tests, I did some important homework.  First, I
checked my insurance to determine which local labs I could use to draw the
blood.  I then called each of these labs and asked whether they could send
the blood samples to Specialty Laboratories.  I found a hospital that could
do all of this.

It was only then, that I took my son to see the doctor and asked him if he
could order the tests, showing him the ad.  Thankfully, he was very
cooperative and ordered the tests by the numbers and I asked him to write on
the order "to be done by Specialty Labs."

An important thing to remember is, since the genotype test has to be sent by
overnight mail and frozen to 24 deg, the sample should be taken early in the
morning at 7 or 8 AM and early in the week (Monday or Tuesday) in order for
the sample to get to Specialty Labs before the weekend as they are closed
then and the sample would just sit and be unusable.  I had to go back three
times before getting this right.  My son was amazingly patient with all this
(he is 11).  I told him he was the prototype for all this as I would
eventually like to have his older brother tested some day as well, but I knew
he would not be as patient about it (he is 17).

I also checked on the prices for each of the tests in case my insurance would
not cover them and found the prices to be reasonable - $230 for the GenotypR
and $379 for the EvaluatR.

The results showed my son has inherited the Celiac Disease associated HLA
alleles DRB1*0301, DQA1*0501 and DQB1*0201, but thankfully all his other
tests were negative so he does not have Celiac Disease now.  I will probably
have him retested with the EvaluatR every three years or so or if he develops
symptoms.

Hopefully my experience might help others who would like to have these tests
done but are not sure how to go about it.

Specialty Lab's phone no is 1-800-421-4449 if anyone wants more information.
If anyone has any questions to ask me about the whole procedure, you can
write me back.  By the way, this whole process was started in November right
before Thanksgiving and I was able to get the results back only recently
because of all the holidays.

Barb from NE Ohio

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