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Subject:
From:
Nancy Lilly <[log in to unmask]>
Date:
Wed, 3 Dec 1997 21:43:43 -0000
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<<Disclaimer: Verify this information before applying it to your situation.>>

First - thank you to those who contacted me with your support & good
wishes.  And I seem to have mistakenly given the impression that I
was:(1) still gluten free or (2) on a deliberately low gluten diet.
Neither is the case.  I think I may average close to the two bread slices
a day.  It's just that I am frequently surprised that most of my meals
are gluten free.  After all, if I have a GF breakfast & dinner, plus GF
snacks, and yet eat a sandwich for lunch I've hit the "two slice" level.
I ate at that level for four months before my biopsy, (although it was
really difficult at first - I had programmed myself very successfully to
stay away from gluten and every bite gave me a case of the guilties.)

Anyway - there were eleven responses to my Gluten Challenge Postmortem.

1. Three people are in that limbo between symptoms and diagnosis.  I wish
you luck, Laurie, Valerie, and Ken.

2. Four people questioned the validity of the biopsy/diagnosis, basing
that on length of time of the gluten challenge and also whether the
pathologist and/or doctor had suffient knowledge to read the info
correctly, plus the fact that there is still so much unknown/unconfirmed
about the disease.

3. One person questioned whether there might have been a recovery from
the disease.  He felt that I should have had blood tests.

4. And there were three responses sharing history, experiences & symptoms.

Again, thank you all so much.  I must admit, I keep waiting for the other
shoe to drop.  I would never say an unqualified "I don't have CD!".  All
I can say is that so far I'm healthy & enjoying life.  Something
obviously caused the severe symptoms I had for so long, and obviously my
five or six GF years helped heal my system.  I wish I could have received
knowledgeable medical help when it was needed, and gotten answers instead
of a run-around.

 What makes me the angriest is the hell that many people have to go
through because they do not have the opportunity to work with a
knowledgeable and caring medical professional, because of lack of money,
or insurance & HMO regulations, etc.  Check with your local CD support
group - sometimes there are ways around these things, and I wish I had
tried harder to find a solution from the beginning. (Then again, at that
point I was so sick & confused it's a wonder I did anything.)

Anyway, good luck to all & have wonderful holidays.  I will be away from
my computer until January 5.  If anyone needs to e-mail me, please do it
directly, as I'll have to turn off my list mail for the next four weeks.

Nancy

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