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Lauren, Wendy, and Amy,

I too was diagnosed with Chronic Fatigue Syndrome (with the pressure points
and other symptamology to qualify for Fibromyalgia Syndrome, which my doctor
believes is the same as CFS/CFIDS).  I developed it about 11 years ago.  Last
year I was swimming along in cyberspace, and just happened to see a posting
from Don Wiss on the sci.med.nutrition usenet group about canker sores
possibly being related to something called "celiac disease."  I had a couple
of the sores in my mouth at that very moment and had that evening put Orajel
on them to deal with the pain.

So I signed onto the mailing list, lurked, and ordered up from the listserve
all the FAQs and other info I could get my hands on.  Except for one symptom,
the pattern fit (that one symptom was weight loss; although I had been
skeletal thin and lost lots of weight the first time I got acutely ill, I am
one of those whose CFIDS caused her to gain lots of abdominal weight.  As a
result of following the gluten-free diet for a year, I've lost 30 of the 50
pounds I gained since taking medication to treat the CFIDS.  I'm now
medium-sized.).

After reading the FAQs and other info, I thought about my childhood (I'm in
my 30's now).  I began to suspect that a hospitalization at age 14 for
intestinal disease could have been the first major celiac episode, or at
least major and episodic enough to enter a hospital.  At the time, a barium
x-ray showed "erosion" in the entry to my small intestine, so they called it
duodenal (sp?) ulcer disease.  But the ulcer treatment then--taking
Probantine (sp?), which dried up my mouth, and eating lots of white bread and
milk and other "bland" foods--was worse than the disease.  Whereas before I
could get about and do things, I became a bedridden, shrunken (5 feet six
inch 85 pounds) 14 year old.   I soon realized that if I stopped eating and
stopped taking the medicine, I felt better.  But the doctors started hinting
after a couple of weeks of this that I had anorexia nervosa, then a popular
diagnosis for teen girls who skipped meals.  After two weeks of flushing
pills and milk down the toilet, hiding crackers under the bed and sneaking
the cheese to my little brother in exchange for whatever vegetables had been
served for dinner, my father lured me back to eating regular meals one summer
day with a couple of peaches and the promise that I could eat anything I
wanted, provided it was nutritionally sound.  That's when I started learning
about nutrition...

I learned from the professionals who post on this list that in those days
(1970s) doctors likely thought that only infants and young children developed
celiac disease, and they got over it by late childhood.  They therefore
wouldn't have considered doing an intestinal biopsy.  I thought about my
family history--both my mother and father had digestive troubles, to the
point where they both had given up eating out; a sister developed
osteoporosis in her 30's (my mother in her 50's), and the family tree is
covered with folks with all sorts of autoimmune disorders.

I took all of these recollections and info to my current doctor, and he had
the blood tests done.  They all came back positive.  We decided to *not* go
the biopsy route, for  medical reasons.  So I have a statistically high
probability--90%+, I think--of having celiac disease.  Good enough for me.

My medical odessey (sp?) reads like a horror story and an indictment of the
American health care system; it includes seeing scores of doctors; hundreds
of thousands of dollars spent on diagnoses, surgeries, and treatments (not
all covered by insurance); severe abdominal pain for as long as I can
remember; long absences from school, university, and now the workforce (I've
been on permanent disability from my management job for 11 years);
underdeveloped bones and muscles which weakened over the years in spite of me
eating a "healthy" diet, working out with weights and taking supplements;
mysterious skin rashes and mouth ulcers;  having to travel with a supply of
barf bags with me in case I had to throw up and couldn't get to a bathroom in
time; being carted away from airplanes by ambulance (to emergency rooms)
after eating food on airplanes; a laundry list of separate autoimmune and
other diagnoses, so that anyone reading my record would view me as either a
hypochondriac or a walking pathological museum; assault by a pervert doctor;
a death-defying botched laparoscopy (different doctor...); battles with
insurance companies, who then had surveillance conducted by private
investigators...  I ought to write a book...;-)

Anyway, most of the CFIDS/FMS symptoms have gotten better, but they haven't
gone away entirely.  But whereas before, when there was constant abdominal
distress and I had to wear maternity clothes to cover a protruding celiac
belly, along with a TENS unit to deal with the pain, the abdominal distress
is gone, as is the belly (the belly comes back slowly if I've accidentally
ingested some gluten).  It's nice, after a decade, to give up wearing
maternity clothes.  But I've noticed that doctors are beginning to recommend
gluten-free diets to their CFIDS patients, to deal with what they call
"leaky-gut syndrome."  I'm beginning to wonder whether certain cases of
CFIDS/FMS are the results of long-term untreated celiac disease, or the
results of celiac disease newly activated by a stressor (virus, etc.).  But
I'm not a doctor; what do I know?

Anyway, I'm one of those folks on the list with a CFIDS/FMS diagnosis...

Sue