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H listmates,

Do I have my facts Wrong? I just came back from the gastroenterologist who
stated that I definitely do not have celiac disease.  He based this on
negative biopsies.  3 samples were taken.  I have GF for 11 years.  I was
never officially diagnosed.

My history included illness since childhood.  I did not grow from 9 months
to 2 ½ years old. (I am a tall female now 5’7”) I had separation anxiety,
learning disabilities, poor concentration/attention deficit, bone and muscle
pain, depression, cavities in all my teeth, chronic constipation, etc.  By
forty, I had symptoms of severe malnutrition, which included, anxiety,
depression, raw tongue, mouth sores, heart problems, night blindness,
anemia, severe bruising, body odor, weakness and chronic fatigue, etc.  When
referred to a nutritionist by an astute doctor, and put on low dose
vitamins/minerals 8 times a day much of the vitamin deficiency symptoms,
including life long depression cleared up.  No one knew anything about CD.
A few years later I was put on an elimination diet and I discovered that
gluten and soy were at the root of my problems, and that without them I had
no more pain, poor concentration, etc.  Additionally, 2 of my children so
far tested, my brother, cousin and 3 (so far) of my grandchildren have been
diagnosed with CD.

I explained all this to the doctor.  He said that he could not consider that
I had celiac disease unless officially diagnosed.  During the endoscopy he
noted the following:

“There was a paucity of duodenal folds with ridging seen suggestive of
celiac disease”

The biopsies came back negative.  Therefore the diagnosis that I do not have
CD.  I tried to explain that I understand that if one keeps a strict GF diet
(I seldom even go out to eat because the slightest gluten keeps me sick for
4-5 days) that the villi should regenerate.  That I have been told that
doctors test to see if one is in compliance with the diet by doing follow up
biopsies.
He was adamant that there would still be inflammation present in the deep
layers of the intestines and these would show if I had CD even if I was on
the diet.  He sited Dr. P Green as his source.

Can anyone out there in the medical or research area of CD clarify whether
the underlying mucosa remains inflamed. Does having
duodenal folds with ridging actually have any relationship to CD.  I have
never heard this before.  I would like to refer him to some of the latest
research.  If I do, I will imagine that our relationship will be strained,
but such is life.

Thanks to all, Carol in NJ

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