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Subject:
From:
Gail Maurer <[log in to unmask]>
Date:
Fri, 24 Oct 1997 16:38:40 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi Folks
First, thanks to all of you.  My wife has CD and as the one who plays with
the computer in this house, i,ve been the one to read your posts daily and
its been incredibly useful for us.

Next a brief history.  My wife has had stomach pains and diarrhea for more
than 20 years (shes forty).  We went to a series of dotcors and got a series
of misdiagnoses.  Finally about three years ago she saw a doctor in NYC who
diagnosed it as Celiac almost immediately.  She never had a biopsy done but
the results of going GF and lactose free were immeduiate and dramatic.  Over
the last year things have gotten worse again and are presently at an all time
low.   The doctor has mentioned refractory sprue and collagenous sprue to
her.  Within the last couple of days  he gave her an excerpt from a book he
co-wrote about causes of diarrhea; that part dealing with CD.   The last part
of the excerpt states that some people don't respond to going GF and its
called refractory sprue.  It goes on to say that some of those with
refractory sprue have a band of fibrosi in the small intestine and thus its
called collagenous sprue.

Now what got me crazy was the next sentence "such patients often have a
relentlessly downhill course resulting in death".  As you can imagine i am
absolutely beside myself.  I'm not sure if my wife read that part and i,m not
about to bring it up yet.  I called the doctor immediately but he is out of
town until some time next week.

My questions are;
1. Can a biopsy or other test conclusively rule in or out Collagenous sprue?
2. If so, what is the test (if other than a biopsy)
3. What if any treatment exists for collagenous sprue other than the usual GF
diet
4. Has anyone had any experience with Collagenous Sprue and give us any
information about to do or what to expect

Thank you
Mark (trying to smile)

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