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Hi Everybody,
I received a number of excellent replies regarding sarcoidosis.
I will send the summary in 2 parts.

Sarcoidosis is the disease; and sarcoid of the lungs is a location affected
by the disease. According to a report by the U.S. Department of Health and
Human Services Public Health Service National Institutes of Health;
Sarcoidosis is a disease due to inflammation. It can appear in almost any
body organ, but most often starts in the lungs or lymph nodes. As
sarcoidosis progresses small lumps, or granulomas appear in the affected
tissues. Symptoms are usually general. Weight loss, fatigue, night sweats,
fever, or just an overall feeling of ill health. In some cases it shows up
with the appearance of skin rashes. red bumps on the face, arms, shins, ect.,
and sometimes inflammation of the eyes.

Sarcoidosis was once considered a rare disease. It is now known to be a
common chronic illness that appears all over the world. It is the most common
of the fibrotic lung disorders, and occurs often enough in the United States
for Congress to have declared a national Sarcoidosis Awareness Day in 1990.
Sarcoidosis is currently (1993) thought to be associated with an abnormal
immune response. Whether a foreign substance; a chemical, drug, virus, or
some other substance is the trigger and how the immune disturbance is caused
are not known. No one can predict how sarcoidosis will progress. In general,
sarcoidosis appears briefly and heals naturally. However, 20 to 30% of
sarcoidosis patients are left with some permanent lung damage. In 10 to 15%
of the patients, sarcodosis can become severe and chronic.

When either the granulomas or fibrosis seriously affect the function of a
vital organ; the lungs, heart, nervous system, liver, or kidneys, for
example, sarcoidosis can be fatal.

Research in the United States into the unanswered questions about sarcoidosis
is being conducted by the National Heart, Lung, and Blood Institute.

*******
...... my mom was recently diagnosed with
sarcoidosis. She has never been diagnosed as a celiac and doesn't eat
gluten free. However, my doctors believe that I have celiac but I have
been gluten free for a while and I am not going through all the biopsy
stuff. I didn't know that Sarcoid was related to celiac and I know you
will post all of your findings but I would like to know as much as
possible. Mostly for my mom because her doctor will not accept her
diagnosis so he will not treat her pain. Maybe if I had more
information I could make her pain go away by changing her diet a
little.

******
Wow - what timing. My brother was just diagnosed with sarcoid about 6 weeks
ago (I am celiac). My mom had sarcoid, as well. She died of a heart attack
in '83. I'm very curious what you find out. Bette Hagman's book makes a
reference to sarcoid, but I haven't heard much else about the connection

******
OK
My sister was diagnosed as an asymptomatic celiac a year after her baby (who
almost died at 18 months) was diagnosed. We have been in the celiac world for
only a couple years now and still researching the family connections.
Our brother was very ill about 10 years ago. They did a zillion tests and
originally thought he had leukemia. I doubt that they looked for CD. He was
in the hospital for a couple weeks. It was decided that he had sarcoidosis
and was told to keep out of the sun. He has to watch his dairy intake and he
can't eat shellfish. End of story. He got better.

He has not had any further problems and we are now wondering if this wasn't
really a CD type reaction. He is going to be tested soon. He may be
asympomatic or latent. I read recently that CD and sarcoidosis are on the
same gene. I personally think that the related disorders crop up often in
family members and that all should be tested for CD. ( only blood tests, not
too much bother!) All the celiac medical experts will tell you the same
thing.

Our Mom was tested for CD (negative) but she does have IBS. (yes, we had a
reliable doctor)

******
Here is something that a friend wrote. He suggested looking into Medline
for more. I did. I found 32 citations connecting celiac disease and
sarcoidosis! (And this was a year ago.) If one has both, then controlling
the celiac disease may help controlling the sarcoidosis. I can e-mail the
32 citations and some abstracts if you're interested.

From: Ron Hoggan <[log in to unmask]>
Date: Mon, 02 Sep 1996 17:24:19 -0700 (MST)
Subject: Re: sarcoidosis

Sarcoidosis has repeatedly been associated with celiac disease. Some
researchers seem to view it as a condition which results from untreated
celiac disease, while others see it as coincident with celiac disease.
Here are a couple of references you might want to look at:

1. Douglas, et. al. "Sarcoidosis and Coeliac Disease: An Association?"
_Lancet_ 1984; July 7:13-15
2. Karlish "Coeliac Disease and Diffuse Lung Disease" _Lancet_ 1971; May
22: 1077

A medline search might reveal more information to you, and I would suggest
that you satisfy yourself of the connection.
In #1, it says, in part: "These cases suggest there may be an association
between coeliac disease and sarcoidosis, but formal studies of small bowel
function in sarcoidosis are needed to confirm this. It is important to
recognise that these two conditions can occur together and that unexplained
weight loss in a patient with sarcoidosis may be caused by coeliac disease."
You might consider suggesting that your friend get a full panel of blood
tests for celiac disease, as it is usually a very treatable condition. And
I have been pleasantly surprised by the resolution of other, apparently
unrelated health problems, that have cleared up on the diet since I was
diagnosed. I hope she is similarly surprised.

******
Thank you for all the very informative replies.
I hope this helps all of you who had questions about this disorder.

All the best,
Susan