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Hello listmates.  I posted this question several weeks ago:
     My daughter is our only diagnosed Celiac.  The rest of our
immediate family and my parents have all been tested as a result
of her diagnosis. We have all tested negative... My one son had a neg.
biopsy... I, though, have many of the symptoms of CD... I have been
tested for many possible causes but was negative.
     This past month, I have experimented on eliminating wheat and
have noticed an elimination of almost all of my symptoms...
it seems to me that I definitely benefit from no wheat.  But, I would
like to know if I have Celiac Disease so that I know whether I should be
cutting out all gluten.
       Any suggestions on what to do to get an accurate diagnosis?  ...
Or, should I just believe that I don't have CD and stay away from wheat?

I received many responses.  Most suggested that I just go on a gluten free
diet if it makes me feel better.  Many wanted to know why I felt the need to
have a test.  A few, thankfully, suggested I go to Dr. Fine's research and,
also, use his enterolab for testing.  The book Dangerous Grains was
recommended by several people. And someone suggested I do research on
whether gluten sensitivity and CD were actually the same thing.

I want to address why I felt I needed a test. I am surprised that you, who
responded to me, of all people, who know how difficult and expensive it is
to follow a gf diet would actually question why someone might want to avoid
it.
But, since you asked, here are my reasons:
I want to know if I need to be as diligent about watching every little crumb
like
I do for my daughter; I don't want to increase our monthly food bill any more
than it already is if it isn't necessary; I have relatives who exhibit
symptoms of
CD but refuse to get tested or acknowledge it, but maybe if I test positive
then
they might take their own symptoms more seriously; I showed relief of
symptoms from eliminating only wheat, so why would I want to give up the
other grains if I don't medically need to?  On the other hand, an accurate
test
might
 show me that I do need to medically eliminate the other grains as well.
       Now here is the action I took.  I made an appointment for next month
with the GI associated with my local Celiac Support Group. I ordered 3 copies
of Dangerous Grains, to share, but haven't received it yet.  Tonight I
watched a
video of a presentation by Dr. Fine which was so very, very helpful and
answered my questions. Now I know that a person can have Gluten Sensitivity
without it having gone to the end stages resulting in Celiac.  This could
result in
a neg. blood test and/or a neg. small intestine biopsy.  So I am going to
have
the fecal test done at entero lab, which has a better accuracy of detecting
the
early stages of Cd, which is actually not CD, but just gluten sensitivity, if
I understood his research correctly.  He likened CD as a heart attack of the
colon and gluten sensitivity as the heart disease which could be controlled
so
as to prevent the heart attack (CD). My husband and I are probably going to
take
the rest of our children and ourselves off of gluten, but may get Dr. Fine's
tests
done on everyone first for a base level, so we can make sure that we are
improving later.
Thanks to all who responded so I could benefit from your experience and
knowledge.
Laurie

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