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I received many responses to my request for help understanding my negative
genetic test.  Thank you all for your support and willingness to share your
experiences.  Here is a brief summary of the information that I received.
1.Many people reminded me that other genes may play a role in Celiac and
that 1-3% of diagnosed Celiacs do not have the DQ2 or DQ8.  Unfortunately,
most physicians that I have encountered have dismissed this and even the
Consensus Conference didn't acknowledge it (except via one audience member's
comment).
2. Quite a few people referred me to Dr. Fine's research and lab re: HLA-DQ1
being associated with gluten sensitivity.  Unfortunately, the same problems
exist here as mentioned above.
3. Three people said that they too had a negative genetic test, but were
continuing gluten free and sent encouraging words.
4. One person shared her experience with improperly prepared biopsy slides.
She has them re-read by Dr. Fassano.  She also stated "DR-4 has been found
more often in celiac patients with cancer by a a British researcher whose
last name is Holmes."
5. Several people suggested that I have a wheat allergy (but I have been
tested multiple times for this and it is always negative). One person
included this link which is helpful for understanding
allergies/intolerances/Celiac -
http://www.intelihealth.com/IH/ihtIH/WSIHW000/7945/24481/286282.html?d=dmtContent
6. DQ1 and DQ3 were also reported to be implicated in Celiac by several
people -- although I can't seem to find any research to substantiate this
(other than Dr. Fine's re: DQ1 and gluten sensitivity).
7. A few people mentioned seeing a homeopath/naturopath - however, with
idiopathic anaphylaxis, I avoid taking all avoidable medications -
especially ones that are not regulated by the FDA - so this is probably not
the best approach for me at this time.
8. Quite a few people shared with me there experiences with viruses and
suspected immune system damage.
Thank you all for taking the time to respond.  I am very grateful.
Best wishes,
Sara

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