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

08/12/04

Hello to Everyone,

On 8/2/04 I posted an inquiry for genetic testing. First let me thank
everyone who responded, it was quite
helpful to read the responses in forming my own opinion and decision. A
summary of responses is below.
I am not in the medical profession so I won't be entirely accurate in
terminology so I'll refer you to the recent consensus statement on Celiac
Disease from NIH for further information.

http://consensus.nih.gov/cons/118/118cdc_intro.htm

For me, I've decided not to pursue genetic testing. I'm going to count my
self lucky that I have GF diet and my improved health.  I am glad I posted
the question and learned about the testing so now I can pass on the
information to my sister who has CD symptoms and she has two children.

Thanks again for your responses and assistance.

1. Genetic testing isn't 100% full proof. It won't give a definitive
diagnosis. It will establish the probabilities. Not every genetic marker
associated with CD has been identified. The two genetic markers (DQ2 and/or
DQ8) are the most prevalent in those with CD. Therefore, a person negative
for DQ2 or DQ8 is extremely unlikely to have CD but there's still a
possibility as not every gene has been identified. If you have DQ2 and/or
DQ8 you are predisposed to the disease, but you still may never get it.
People from both sides (those with the genes but don't have CD, and those
with CD that don't have DQ2/8) of these test results wrote in. Many of the
responses were from people who had genetic testing along with other family
members.

The quoted statistics as to precentages and distributions of the genetic
markers in general population and in people with CD were all quite
different. Again I refer you to the consensus report. I didn't do any
further research.

2. Other recommended labs that offer genetic testing as well as other CD
tests, perhaps at lower costs than the quote of $300 from Kimball Genetics.
           Finerhealth.com
         http://www.enterolab.com/  This lab offers a pkg of test, focusing
on a intestinal absorption test through stool samples.
          http://www.prometheuslabs.com/  contact Jennifer Swalwell
([log in to unmask])

3. Instead of paying for tests, participate in a research study that
included genetic testing.

4. Genetic testing may be of benefit for your own family, ie children
inheriting the gene predisposition to CD.

5. Before any test, ask yourself "what am I going to do with the
information?" If the information, won't change anything, why do the test?
This made sense to me. I'm not going to start eating gluten no matter what
the results.

6. Even though it's 50 years old, the only definitive clinically proven 100%
gold standard test, is the gluten challenge and intestinal biopsies. Genetic
testing may be useful in deciding whether to proceed with gluten challenge.
For me, this refers back to no5. And the gluten challenge is just out of the
question for now anyway. I don't know how I'd survive it.

7.  Listen to your body. If you're better without gluten, don't worry about
tests and doctors, stay away from gluten.

8.  Once again the book "Dangerous Grains" was recommended. I haven't read
this book, but it's been recommended to me often.

9.  Concerns about medical records and qualifying for health insurance.
      Several people responded that getting health insurance with CD on your
medical chart could be difficult if not impossible. Several said that it has
made them uninsurable (particularly in purchasing insurance on an individual
basis).  One person suggested having the results sent to a personal friend
who is an MD, to keep them from your medical records. The gene test is not a
Diagnosis of CD. Labs may report the results as "in the presence of
symptoms, it is consistent with CD." One person said on medical forms, they
list celiac disease (diet controlled). And found that it most often
interpreted as a diet problem and not a medical issue. General strong
consensus CD diagnosis is not something you want in your medical file.

10.  Suggested posting on http://forums.delphiforums.com/celiac/start   for
further information and recipes.

11.  Count yourself lucky, that the disease was 'treated' early enough and
GF diet is working. Things could be much worse.

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