<<Disclaimer: Verify this information before applying it to your situation.>>

Thank you so much for the many responses from those of you on the list who
also have fibromyalgia (FM) and chronic fatigue syndrome (CFS).  I received
56 responses in all, which is why it has taken me so long to summarize.

Many of those who replied believe that undiagnosed CD may have led to the
symptoms of FM and CFS.  Many said their symptoms are much better when they
stopped eating gluten.  I am a self-diagnosed celiac (7 years).
Unfortunately, many said they still have a lot of chronic symptoms of FM
and CFS that did not resolve with the GF diet.

In addition, many said they got sick with FM or CFS about the same time
they were diagnosed with CD.  Of course, with many, there is the suspicion
that these are both autoimmune conditions.

Also, several people asked about a listserv for FM or CFS.  I know the one
I used to be on is also managed by St. Johns.  You can reach them at
[log in to unmask]  Or, I think you can go to the main site at
www.maelstrom.stjohns.edu.

Here are some snippets from the posts I received (sorry, but this may be
long):

I had a hard time being taken
seriously at any doctor's office I visit after I
mentioned Fibromyalgia.  Maybe just because there
are SO MANY symptoms under the heading of FM.
Once I quit mentioning it (FM) I was referred to
a GI and got a diagnosis.

**********
I had severe muscle spasms for 15 years that resolved within 2 weeks of
going gluten free.  Any time I have an accidental ingestion, I spasm up
again.

**************

I believe the fibro symptoms began about the
same time celiac symptoms began, although it was years -- three -- before I

was diagnosed with celiac. By then, I had terrible fibro symptoms,
significant hair loss (I used to have tons of hair -- Diana Ross-like
hair),
and had dropped from 128 to 92 pounds... but I had to diagnose the
celiac myself, and it happened by accident. ..But even accidental exposure
to gluten and stress sure
exacerbate my symptoms (which are interestingly joint pain and weight loss;
I have never had the traditional GI symptoms or DH that others suffer with)
and hair loss. I continue to struggle with that to this day.

8**********

I have both celiac and fibromyalgia.  The celiac went untreated for about
40
years, so I ended up developing a HUGE list of food allergies; pretty much
everything I ate during that period.

Bottom line: if I follow food guides EXACTLY my fibro is a bit better.  MPS

(CMP), however, does not seem to be affected

********

I was sixty when I was diagnosed and I had it my entire life and it just
kept getting worse....I was diagnosed with Fibromyalgia about ten years
ago, told to live with it
as there was no cure, and told to exercise. Finally at a support group some
lady told us that her nutritionist had told
her to stop eating grains and dairy and her sickness would go away. I
didn't
believe her but I tried it anyway. In two weeks I had no pain, no brain
fog,
no anxiety, no diarrhea, no fatigue.

*******

I had undiagnosed Celiac until I was 32.  By that time a lot of
malabsorption had
occurred and I had developed an auto-immune condition - reactive arthritis.
A year on a gluten free diet I developed fibromyalgia.

****************

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *