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I am a 49 year old biopsy confirmed celiac with 2 children aged  11 and
16.  I have read that my children have a 10 to 15 % chance of
developing celiac disease.  I have been discussing with my Gp and
Gastroenterologist how to test to determine if they 1) have inherited
the genetic pre-disposition for celiac disease, and 2) whether they have
sub-clinical manifestations as neither presently has any "classic"
symptons.

It appears that the best way to do this would be to: 1) do HLA testing
to determine if they have the genetic predisposition, and if positive,
then run the suite of 4 anti-body tests to determine if they have active
celiac disease.  These tests are not covered by our Canadian provincial
government medical insurance and, in fact, are not readily available
here.  I will therefore have to send blood samples to the US to get the
analysis done.

I have the following specific questions:

Is there any research  being done that would be interested in my and my
children's blood samples in exchange for a reduced rate on the lab
tests?

The celiac list posting entitled "Biopsies, Serological and other
noninvasive screening for celiac Disease" lists four US labs as being
able to do anti-body and presumably HLA testing.  Speciality Labs is the
closest and therefore my likely preference.  Does anyone have any
experience with these companies which would indicate that I should go
anywhere else?

In order to save cost, I propose to first get the HLA testing done and
then do the anti-body testing if the HLA test is positive.  I am
concerned that Speciality Labs only seems to be able to analyze for
HLA:DR3.  The celiac list posting entitled "Questions and answers on HLA
typing and celiac disease"  indicates that some celiacs are  DR3
negative and positive for DR5/DR7.  In addition another 4-5 % of celiac
are positive for DR4 and DQ8. (Dam this is complicated!)   Anyways I am
concerned that the DR3 test alone may be inconclusive.   Does anyone
know if tests for the other HLA markers are available?  Additionally, is
there much benefit in only doing the test for DR3?   Should I get the
tests done on myself first to determine which HLA marker we should be
interested in?

Finally, I am aware that the traditional approach to 1st relative
diagnosis is to get antibody blood tests done at regular intervals.  I
would prefer to know if my children have the potential for developing
celiac disease.  If they did,  I would then minimize gluten intake to
potentially reduce the risk that they will develope it.  Is this an
unreasonable approach?  Does anyone have any advice that would help.

Thank-you all for your time and assistance.

Mike Miles
Victoria, BC, Canada