<<Disclaimer: Verify this information before applying it to your situation.>>
Hi all. A long time ago I asked about a possible connection between CD,
Reynaud's, and Sjogren's. I heard back from a number of people (responses
below) - thanks to all who replied! I think I'll have to hit the medical
journals for information on possible connections, too.
Thanks again.
Chris Silker
Minneapolis, MN
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I have Reynaud's and it kicks in when I am just chilly, losing the
blood flow in my hands and feet. They turn yellow and go numb. This
started happening when I was 13. I am now 60 and have only been
diagnosed celiac for 3 years but have had the symptoms since birth. I never
connected Reynauds with CD, but perhaps there is a connection.
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Is Reynaud's related to celiac?? I have Reynaud's syndrome (undiagnosed,
but I *know* what it is and that I have it!) My son "failed" the celiac
blood test and biopsy but we *know* he is at least sensitive to gluten
(and lactose) and is on a GF diet. I didn't know of an association between
Reynaud's and celiac.
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I asked the question about Raynaud's about a year ago and
found a number of individuals who also had it. I am definitely gluten
intolerant (on gf diet x 5 years), but no definitive diagnosis of
celiac. I began having full blown Raynaud's phenomenia about that
time. The episodes have increased somewhat each year. No history of
Sjogren's.
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I do have occasional circulatory problems when the tips of my fingers
turn blue. That probably is Reynaud's, but I have not been given an
official diagnosis, since it happens only occasionally...and I probably
did not remember to mention it to my doctor (who I see only every 2 years
or so.).
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My mom has CD, Sjogren's. and Reynaud's. Early symptoms of SS were dry
mouth and eyes, not all the time, and fatigue. Diagnostic test is a lip
biopsy. There is a SS list serve that many people had endless trouble
after the biopsy. If you want the address to the listserve let me know and
I will get it from my parents. She takes prendisone for the SS and GF diet
for CD as well as lacrisert eye inserts and endless eye drops. One of the
things that has helped dry mouth the most for her is putting in vaseline
all over inside of mouth.
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I was self diagnosed with celiac disease, but my patch of scaly itchy
skin is gone since GF diet. I was diagnosed with Reynaud's syndrome 13
years ago approx.
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I was very interested in your post because I think I have one or both of
those illnesses (Raynauds and or Sjrogren's); I have never been diagnosed for
either of them but a couple (of the many) doctors I have seen threw these
words out sort of flippantly; I asked the last one who mentioned Reynauds
what the treatment for it was and he said "wear mittens" (don't you just love
our typical tradtional doctor?)
My main symptomes are an extreme sensitivity to cold (I also don't tolerate
real hot weather well either but the cold is worse to the point of painful
hands and feet when the temp is under about 55 degrees)
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Sjogren's syndrome mailing list:
[log in to unmask]
In the body of the message put: SUBSCRIBE SS-L
Don't have a lip biopsy until you have asked the people on the list about
it. Most don't recommend it.
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I happened to be inthe hospital due to another problem. The doctor
checked my toes and found them pinkish purple. He then began asking me do
my fingers and toe hurt when exposed to cold temps in the Winter....yes,
they get numb and ache. I had to withdraw from snowball fights as a kid
because of the numbness in connection with the gloved hand throwing and
packing snow. The doctor recommended meditation for me which was training
I received at the hospital. I invested in a device from Radio Shack
called a Biofeedback Monitor. I haven't used this in years, but it also
helped my migraine headaches. Time is a problem now. It is important to
keep my pulse rate normal so my body doesn't shut down the blood vessels.
Cold also shuts down the blood from reaching the extremities. Me.....I'm
just glad it isn't Lupus!
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I had Reynaud's for several years before being diagnosed with CD. The doctor
didn't treat it - said if it got too bad it could be helped with surgery,
seems they clipped a nerve or something like that. That was 12 years ago
so my memory fails me a little. I would have an attack almost daily where
my hands would get cold, turn white, tips of fingers blue-ish. I would run
warm water over them and then they the circulation would slowly start back
and you could see the color slowly returning.
After going on a GF diet, my Reynaud's seemed to disappear almost completely.
I only have a couple attacks a year now, and I hardly notice them.
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Hi, I too am a diagnoised Celiac and have had Reynauds also diagnoised many
years ago.
I lived in New York at the time and I remember my thumb for no reason
whatsoever getting swollen and blue. (I was very scared). Once diagonised,
the doc wanted to know if I had been on birth control, smoked, high caffine
-- all the regulars of bad circulation. and advised me to stop any of the
"bad" behavior. He gave me a vaso dialator (sp) pills that I took for a
period of time. I then made up my mind to move to warmer climate.
Now that I am on my diet and healthy I really don't experience much problem
-- except if I get a chill (even in the summer) my hands go white and that
same old feeling comes back. I do things to warm them up as soon as possible
(even if I look contorted with my hands under my armpits or any place is
98.6)
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When you find out what Dr. tests for Sjogren's syndone, please let me know.
I asked me eye dr. and she said -"ask your gastroenterologist. I asked my
gastroenterologist and he said the eye Dr. should check. So much for the
medical confusion that goes on today.
There is a www for sjogrens as follows:
http://www.sjogrens.org/what.htm - good information on it. I think I read
where only 3% of celiacs have Sjogrens.
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