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Hi All--

At least five years on this list, reading all of the questions about testing
and the summaries, and I find myself no smarter than I was about this issue.
If anyone can give me specific medical references I can take to a GI doc on
the following antibody question, I would appreciate your help.

Background (Condensed Version): My blood work and biopsy for celiac came
back from Mayo as "inconclusive" in 2000. There was minimal blunting of the
villa, but not diagnostic for celiac. No antibodies were found in my blood.
Symptoms were bloating, constipation, upper right quadrant pain, lesions in
the brain, biopsy confirmed glomeruli kidney damage, peptic ulcers, diseased
gall bladder, hypothyroidism, severe osteoporosis since age 30, rashes (not
DH), generalized itching and serious fatigue. Three trips to the ER later,
while eating gluten, liver enzymes spiked to 10x higher than normal. Went on
a GF diet and many of the gastro symptoms disappeared, liver enzymes
returned to normal. I still have chronic hematuria, occasional upper right
quadrant pain, lesions in the brain, hypothyroidism and severe osteoporosis.
No more bloating, less constipation, fewer rashes.

Fast forward to today: I see a new GI doc. I made an appointment because I
continue to lose weight (91 lbs., 5'1") and I can't get past the fatigue.
The GI told me that because my blood work in 2000 was normal and the biopsy
was inconclusive, he doesn't feel I have celiac disease. His reasoning is
that one cannot have celiac disease without antibodies. He does feel,
however, that I have an autoimmune liver disease, but because my enzyme
level is normal now, he can't do a biopsy to confirm. He also feels it's
possible I'm gluten intolerant, but do not suffer from full blown celiac.

I'm not hung up on labels. The GF diet has been extremely helpful for me, so
celiac or not, I won't go back to eating gluten. Nevertheless, the doc ran
the blood tests again, plus a whole list of other tests for liver and kidney
diseases. I told him I've been strictly GF for five years and asked how he
expected the celiac panel to be positive. His reply was that he wanted to
cover all bases. Now, I read the post re: Allison and negative DNA with
positive blood work (or I think that's how it played out). So my question is
this: I know there are many people on this list who have negative biopsies,
positive blood work, or negative blood work, positive biopsies. I understand
how the blood work can be positive, but no damage to the small intestine,
but if there are no antibodies for celiac, what damages the small intestine?


I'm not wanting to address the hypothyroid issues and fatigue or the SCD
diet and how successful that has been for some people. I'm angry with myself
for not allowing my GI to do the liver biopsy in 2000 as gluten sets off the
high liver enzymes. It also sends me to the ER with severe pain, nausea and
vomiting. I know that the liver metabolizes gluten and if one is gluten
intolerant or celiac, there's the chance of liver damage. If I'm not making
sense, please just ignore me, but don't flame me.

Any insight into this question will be tremendously helpful. ~~Ayn in
Alabama

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