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Subject:
From:
Allen Brown <[log in to unmask]>
Date:
Sat, 18 Nov 2000 17:05:47 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Folks,

Thank you all for your kind replies. Here is the summary of the replies
I received. I appreciate the help, however, I think my mother in law is
an unwilling subject. We also just found out that she has diabetes and
has never been on the diet for it, nor has she ever told us that it runs
in her family. Picture the TV show "Everybody Loves Raymond" and you
have my family dynamics. She told a friend of mine yesterday that I have
told her what she should eat (diabetes) and she said she will listen
then eat what she wants.

It's possible that she may be more accepting of this possibility
later and I will save all of you e-mails for her to read.

Some were  very interested to hear of a connection because
they have been diagnosed.  Some misunderstood and thought
I meant Polio. The explanation (for some who asked) is in
the links that some of you sent, and thank you to those of you
who sent the links , that was very helpful.  I can at least print out
that information for her and our family.

Summary
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I don't have polymyositis, but do have another connective tissue disease
as well as Celiac Disease.  The literature I have read discusses the
tendency for autoimmune  diseases to run in families (not necessarily
the same autoimmune disease).  In addition, people with CD have a
greater incidence of other autoimmune diseases than the general
population.  I have not read anything that states a direct causal
effect, though I have read articles implying that long untreated CD can
lead to other autoimmune illnesses.

Anyway, if your mother-in-law has CD symptoms, it certainly is possible
that she has CD in addition to polymyositis.  I hope that, with
treatment, now that she has the polymyositis diagnosis, her health will
improve If you want more info on polymyositis, a good site is:
www.myositis.org/ Good luck

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How timely of you to ask.  I just got diagnosed with it and was going to
ask the group.  And the reason I was going to ask is that, while it can
come from various origins, one of them is an auto-immune deficiency just
like Celiac.  While Celiac attacks the tiny hair-like villi of the
intestines and starves the body, some forms of myositis (like
mitochondrial myopathy) attack the tiny hair-like villi (sub-organelles)
of the muscle cell nuclei walls and starve the cells.  These processes
are so similar that there has to be a connection.

The only difference is that Celiac is still underdiagnosed enough that
it is still an "orphan" disease and hardly any scientists are working on
a cure (bless those few who are.)  Whereas the myositises, while still
widely underdiagnosed,  have gone through that stage and enough
diagnoses are now starting to be made that a lot of researchers are
working on it and some treatments are being forwarded.

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PLEASE, PLEASE, PLEASE forward to me any info you get that may link
these two diseases, if such a link exists.  My grandmother has
polymyositis and lives in tremendous pain everyday because of it.  If
there is a celiac link, this would help her sooooo much, and it could
help my mother as well, who is showing signs of it already.  Thanks so much

-------------------------------------------------------------------------

There should be a book called the Merck Manual in your local library
which is a medical book covering all medical conditions.  Look up
polymyositis and you will see information on cause (possibly autoimmune
reaction), pathology, symptoms and signs, lab findings, diagonsis
(including muscle biopsy), treatment and prognosis.

-------------------------------------------------------------------------

Can't you insist on a biospy to determine celiac disease?

-------------------------------------------------------------------------

Hope this helps.

It may be something they will 'outgrow'. Keep faith, stay healthy.

http://www.ninds.nih.gov/health_and_medical/disorders/polymyos_doc.htm
NINDS Polymyositis Information Page

-------------------------------------------------------------------------

This is a real long shot, but I would have her vitamin D levels checked.
If there is a severe deficiency of D, calcium cannot do its job, which
is to keep the smooth muscles and vessels of the autonomic nervous
system functioning, causing diffuse muscle and vessel spasm.  I started
with very severe pains in the large muscles of my thigh (big biopsy scar
to disprove ALS and other things), which progressed to coronary artery
spasm, asthma and swallowing problems before being diagnosed.  None of
this may apply in your situation, but I saw your note and thought it was
worth a try.

-------------------------------------------------------------------------

Thanks again to all of you for your help, if I recieve more info I
will let you know.

Diana in RI

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