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From:
Kathy Robison <[log in to unmask]>
Date:
Mon, 12 Oct 1998 12:35:51 +1000
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<<Disclaimer: Verify this information before applying it to your situation.>>

About a month ago I wrote asking for some feedback on CD & Gastroparesis.
Before I summarise let me tell you that my symptoms are much improved after 4
weeks of Cisapride (Propulcid) tablets before each meal - we are still
working with the dosage - I started on 20mgs per day and am now up to 50mgs.
It seems to be doing a great job.  I am assured that Cisapride is harmless -
whatever that means - but it is certainly better than the upper abdominal
pain which was disabling me daily.  The tablets apparently help to stimulate
nerve endings and hormones in the stomach to encourage normal emptying.  My
GI has since advised that Gastroparesis is idiopathic (which he said means
that they don't know why people get it) and that I will need to be on
medication for 6 - 12 months - and my stomach may return to emptying normally
- lets hope.

I had several replies -

   Suggesting that I eliminate dairy products - which I had previously done
without change to my symptoms

   A mother whose daughter has Celiac Sprue, Gastroparesis and Diabetes is
questioning the relationship between CD and Gastroparesis - suggested that
food types and eating slowly an make a difference - she has taken her
daughter off all medication and is hoping that as the CD symptoms improve so
too will the gastroparesis.  (for interests sake - my gastroparesis developed
after I had been gluten free for 6 months and second biopsy was normal.

   Celiacs seem to develop other problems with their stomachs ..  it seems to
go with the territory.  I too have the same problem.  Was diagnosed with
Gastropresis the same way you were.  Everyone kept on asking if I was
diabetic.  Later they discovered I had Celiac.  I still can tell when I eat
contaminated food...my stomach shuts down.  I wake up the next morning and it
still feels like my food is there.  It is neat to hear someone else has the
same stange problems.  I also have big problems with my autonomic nervous
system..

   Here are some thoughts but nothing definite.  Gastroparesis is a disorder
of the nerve control of that part of your stomach which is affected.  Celiac
can affect that part but only the lining, not the nerve.  In other words it
is associated with stomach ulcer but not stomach nerve damage.  So it seems
your gastroparesis is not related to your celiac.  But I have seen so many
"impossible" things in the 3 years I have been following this list, I think
you will get more help from the list members than you will from the doctors,
at least for now until the exact cause of the gastroparesis can be explained.

   Villi are super tiny - about an 1/16 inch long.  The inside of the small
intestine feels like velvet I'm told, and I've felt it in animals and it is -
don't picture a big hairy mass keeping your food in.  Rice flours are awfully
heavy and thick - it may be you need to lighten up that way to help your
stomach.  Best of luck and I'm glad for you got a clear diagnosis - the true
sign of a survivor is that persistence!

   I would certainly try digestive enzymes.  Your symptoms sound much like
mine before I started using them.  I now use Country Life Extra Strength
Pancreatin--4 tablets with each meal.  These have really changed my life.  I
don't know if they would be available in Australia but I think pancreatin is
just ground up dried pork pancreas ugh!)  and many brands would work just as
well.  One can get pancreatic enzyme pills (in the U.S.)  on prescription and
they don't seem to be the same thing--don't work as well as the health food
store type of preparation.

Thanks to everyone for their input and I hope this helps others as much as
it did me.

Kathy Robison
Albury, Australia

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