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From:
Bob/Sue Brown <[log in to unmask]>
Date:
Sat, 28 Aug 1999 15:14:07 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

This is from Sue, the celiac, not Bob who is healthy as a horse:

I want to tell my celiac story because I have seen so many questions
recently about gastritis, hypoglycemia, candidia problems, slow stomach
emptying, etc. and as a celiac I've dealt with them all and am now
feeling "normal"...i.e., as good as or better than most of my friends.
However, with a bit more effort than they, most likely.

I believe I had celiac disease as early as two or three years old; I
discovered mine at 34 and have been almost (as best as I could do given
the knowledge I had at any particular time) gluten-free for the 26 years
since.  But not necessarily healthy or feeling good for all of those 26
years.  I suffered from stomach problems, constipation, hypoglycemia,
food intolerances, skipped heart beats, muscle and joint pains,
irritability and on and on.  Not all of them all of the time, but sort
of a rotating menu of problems. My doctor was not knowedgeable about
celiac disease but helpful about food intolerances in general.  This
list has been my salvation!!

Here is what I have put together for myself that seems to work.  Maybe
something will be of help to you.  And keep in mind I needed all of it:

1)  Pancreatic enzymes (from health food store, not prescription kind
which don't work well for me)to help digest food (assume my villi
haven't regenerated)- once I started taking these, I no longer had
hypoglycemia.  Also stomach seemed to empty normally.

2)  L-glutamin - an amino acid that helps repair stomach lining.  Once I
started taking this, I stopped developing new food allergies; some old
food allergies went away.

3)  Nystatin (prescription drug that kills candida in intestinal track
but isn't systemic) and acidophilus to control candida.

4)  No milk because it too seems to damage gut.

5)  Gluscosamine sulfate (sometimes chondroitin added) for arthritis.
Close to a miracle for my knees.

6)  Monthly Vitamin B12 shots (not sure I need them but afraid to stop)

7)  Allergy shots for mold, pollen and inhalant allergies

8)  Allergy medicine and mucus thinner to help with allergies and keep
sinuses from stopping up

9)  A slew of vitamins and minerals including multiple vitamin/mineral
three times a day, extra cod liver oil, vitamin E, calcium, folic acid
and B6.

10) Avoidance of rice as it stuffs me up terribly.

11) Exercise to help with gut motility and depression.

Because of needing to avoid rice, I must make most of my own bread-type
products which are of buckwheat or chick-pea flour.

Lots of work sorting this out, some work to keep it up---but other than
that I lead a very normal life. And that's a great thrill to me!

I am very concerned about my children and grandchildren inheriting some
of my problems.  So far one son has a much more simple-seeming celiac
problem, other two kids seem fine, and three young grandchildren are
problem-free.

Hope this is helpful to those of you who find that avoiding gluten isn't
all it takes for you to beat celiac disease.  And encouraging to those
of you who have been working at it for a while and still haven't found
the answers.  Maybe one or more of my solutions will work for you too.

Best wishes,  Sue

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