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Thank you all for the many helpful responses to my post.  It seems that bone
and joint pain are quite common symptoms, but many people also mentioned
heart symptoms similar to mine, sometimes combined with gastrointestinal
symptoms and sometimes not.  One mentioned that their problem had started
with symptoms like mine, then progressed to more severe gastrointestinal
symptoms before finally being diagnosed.  People suggested that the heart
reaction could be due to gas pressure or low potassium.  Several said it
would be important to check for allergies if the CD diagnosis continued to
be negative.  One person mentioned that Vitamin C helped to alleviate the
racing heartbeat.

Several people forwarded references to or copies of relevant research.  Some
Italian researchers have recently published data on a correlation between CD
and cardiomyopathy, an autoimmune heart condition that is serious and
degenerative.  Other research relates to the variety of symptoms of CD and
the newly recognized frequency of it.  One person sent a very comprehensive
file of research articles about the accuracy of the blood tests.  The gist
is that the blood tests are most accurate when intestinal damage is severe
and not so accurate when intestinal damage is mild.

Several people recommended the book "Dangerous Grains" by James Braly and
Ron Hoggan.  I got the book and it is a very thorough review of current
research on the many aspects of CD and gluten sensitivity and the serious
complications that can arise.  Pretty scary, really.

Several people also recommended independent testing labs such as Enterolab
or Prometheus to pursue followup testing.  I did get a copy of my test
results and am comparing them to the detailed information in the Braly book
and in several of the posts.

The question of whether to pursue an official diagnosis in light of my poor
experience with my doctor and the negative tests was well addressed.  A
common theme is the years of suffering and frustration experienced by many
before getting an official diagnosis.  Many of the self-diagnosed said it
just wasn't worth it and their bodies told them what they needed to know.
(Thank goodness one doesn't need a prescription to go gluten-free!)  I feel
fortunate to even be researching gluten sensitivity at this point.  It
seems likely that many people may have early, relatively mild symptoms like
mine but neither they nor their doctors are likely to suspect gluten
sensitivity as the cause.

Through a reference to a web page, I have found a recommendation for a more
knowledgeable doctor in my area.  I believe it would be wise to pursue some
additional consultation, maybe at least the genetic test which doesn't
require you to eat gluten, and possibly some allergy testing.  One reason is
to have better ability to persuade family members to be tested also.  In my
previous post, I mentioned my brother who was diagnosed with celiac as a
child.  My mother fed him very strictly gluten free.  Unfortunately, in
those days they thought you could outgrow celiac.  As a young man, my
brother abandoned the gluten free diet and now his health is extremely poor.
I have other siblings with potentially related problems, such as IBS and
allergies.  I'm kind of on a mission to sort this all out in my family.

Thank you again for all of your help.

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