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Hi
This is my first posting to the list so I hope I am doing it correctly. I was
biospied diagnoised in Jan '97 and re-biospied in May '97. The May biopsy
show "60 % regrowth of villi". I continued to gain weight and feel better
until Sept '97. at which time I had recurrence of symptoms. My problems
included both sharp, stabbing pain and burning, muscle wasting, joint pain,
confusion, personality changes, I have lost the ability to tolerate milk,
eggs and I "react" with gas, bloating and pain to most other foods, sometimes,
and other times tolerate them just fine. I am very carefull not to ingest
gluten (seperate butter, call manerfactors, buy products the the list has
recomended, ect.) I have seen four Doctors since Nov. but none of them had a
clue. I finally went to Mayo clinic in Rochester Minnesota on 6/11
(Thursday). I had an endoscopy, actually I had two because I agreed to be in
a study, so the first endoscopy was done with a new smaller scope with out
anestic, the second one was the old way and they did another biospy. During
the first endoscopy while I was awake, the Doctor said that I had much
scalloping and a cobblestone pattern with no villi present. He said this was
typical of untreated sprue. I have been so very very careful with the diet.
I know that refracatory celiac presents itself with inital improvement on the
diet with recurrence of symptoms, but that is all the info I have been able to
find. I have not been able to get into the archieves for some reason. If any
one has any info on refacatory sprue,or any advice please write me soon. I go
back down on 6/16. Please excuse the spelling errors, that area of my brain
seems affected. I also have trouble coming up with the right word at times.
This list has been a God send for me in the amount of usefull info I get and I
appreciate all of you.
Jill in Minnesota
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