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Subject:
From:
A Gilliland <[log in to unmask]>
Date:
Mon, 22 Oct 2001 12:45:10 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi All--

I didn't intend to take so long getting this summary
posted. Thanks to everyone who responded and to those
who have been so patient for the summary.

I received approx. 20 replies to my request for info
re: the connection (if any) between celiac disease and
MS. I was seeing a new neurologist and didn't know
what she would know about CD. (Turns out, she knows
nothing about CD or the neurological symptoms
associated with it - I will be giving her information
at our followup appointment in Nov.)

Most people brought up the issue of MS being
considered an autoimmune disease, as is celiac, and
the risk of developing a second autoimmune disease
increases. Several people suggested trying a paleo
diet and gave references to information that indicated
MS or MS symptoms improved on this diet.

A couple of related, but secondary issues came up the
day I had my appt. with the neurologist.

1.  My neurologist asked me if I have been tested for
porphyria. Earlier in the day, I received the
following info from a friend via e-mail:

"Celiac disease has been found in conjunction
with a large number of patients with variegate
porphyria."

SOURCE:

Twaddle S, Wassif WS, Deacon AC, Peters TJ.
Celiac disease in patients with variegate porphyria.
Digest Dis Science journal
 2001 Jul;46(7):pages 1506-8

2.  Following my appt. with the neurologist, I had an
appt. with a urologist who did a renal biopsy on me in
1985 for hematuria - just a recheck. He told me that
he was getting published information that indicated
kidney disease, manifesting as chronic hematuria, was
being discovered in celiac patients - especially
women. (He thought that in light of this information,
I was most likely celiac at age 17) It took 34 years
for the celiac diagnosis, which is still
"unconfirmed."

My neurologist did a lumbar puncture on the 18th. If
it is negative for MS, she wants me to be tested for
porphyria as this disease also causes many and varied
neurological symptoms. The testing procedures for
porphyria are complicated, however, so I will have to
think long and hard on that one. If anyone would like
to know about porphyria, the symptoms, the connection
to celiac, etc., there is a group at:
www.yahoogroups.com called "porph." (Without the
quotes) You can also get a lot of information just
doing a search for porphyria on the web. In other
words, please don't use me as a resource person - I
don't know enough to feel comfortable explaining
porphyria to anyone else.

Thanks, again, for your help. There doesn't seem to be
much new medical information re: the relationship of
MS, if any, to celiac. On the other hand, I was
encouraged to find that my urologist was more
enlightened about celiac, and also encouraged that it
seems celiac is being considered in other
diseases...we're evidently making some impact on the
researchers/medical community.

Cheers,
Ayn/Kansas

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