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Hi All--

I've been trying to write this summary for a week now,
but as I get further into the post, I find more and
more issues that I seem to feel need to be aired. (Not
to worry - I'm not up to it today) Regarding the
summary, most people suggested that if a gf diet made
me feel better, go with it. That didn't exactly answer
my question about testing one's nutritional status in
light of negative CD testing, but I understand where
everyone was going with that. There are some tests to
determine nutritional status, but evidently it's
complicated and most docs don't want to bother. One
person indicated they had had a good nutritionist at
one time that they felt was helpful.

I've been totally gf almost a month now and have no
pain at all - the good news. I go for an endoscopy and
colonoscopy on Wednesday, so any biopsies won't be
valid - the bad news. I knew this, but every time I
ate gluten, I had to go to the ER with pain and
vomiting (5 times). That said, I'm pretty sure there
won't be any kind of gluten challenge.

There seems to be some controversy whether or not one
should continue to be gf if not celiac. Why not? I'm
really searching here because my previous CD tests and
biopsy were negative (tests for malabsorption were
positive) and it appears unlikely that I'll be able to
get valid biopsy results now. Is there some evidence
that shows abstaining from gluten is harmful?

I have severe osteoporosis, neurological symptoms,
muscle and joint pain, elevated liver enzymes 20 times
higher than normal, and fatigue. All of these things
can be a result of malnutrition and/or CD, but no one
(doctors) want to bother? Am I the only one who
doesn't understand why nutrition and finding ways to
measure it isn't a priority?

My apologies for what reads like an indignant
outburst. Too many tests, doctors and hospitals lately
and more to come. Thanks to all of you for being so
supportive and willing to read my ramblings.

Cheers,
Ayn in Kansas