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Hi Folks-

I'm responding to the list because pernicious anemia is important to know about
as a disease associated with celiac disease and because Ellen's symptoms raised
a flag when I read them.  [About a year after she was diagnosed with celiac
disease she had symptoms of fatigue and pain all over her body and was diagnosed
as having chronic fatigue syndrome and fibromyalgia (sore muscle syndrome).]

I also got symptoms of growing fatigue and pain all over my body about a year
after being gluten-free.  I had abdominal pain, frequent urination, increasing
weakness, increased anxiety and difficulty handling daily stress, lots of tetony
and cramps in muscles.  It took a year and two different med facilities to get a
diagnosis and cure - but what I have is pernicious anemia, one of the illnesses
celiacs are susceptible to.  And my symptoms are all gone now that I get
treatment.  {See medical -text list of pernicious anemia symptoms at end of this
e-mail.)

Since chronic fatigue syndrome and fibromyalgia are both general terms to
describe generalized, hard-to-diagnose problems, I thought I'd share my
experience and diagnosis for whatever it's worth.

My first doctor did not test for B12 level in my blood, she only looked for
oversized red cells and kept missing the anemia - altho uncomfortable and
unhappy, I wasn't sick enough yet to have the bloated red cells.  The next
doctor picked it up the first time she saw me because I also have vitiligo
(white blotchy skin pigmentation, which began about 4 years ago) and the two are
very closely associated.  The second doctor, Dr.  Geraci, then from Lahey Clinic
in Mass.  (she's now in Pittsburgh) told me that research clearly shows that
vitiligo is a waving flag labeled "B12 deficiency" for about 90% of the people
with vitiligo.

ANYWAY, when she tested me she found my B12 levels low.  People usually have a 4
to 5 year supply of vitamin B12 in their livers.  So when the blood test says
it's low, the liver supply is going way down.  The cure for me is monthly
injections with 1000mg of B12-combined-with-Intrinsic-Factor.  My body canNOT
absorb it from food, no matter how much I shovel in the vitamin.  My diet is
squeaky-clean of gluten; this is not a celiac malabsorption issue.  If your
stomach doesn't produce intrinsic factor to bind with B12 in food, the B12 does
not get absorbed.

The shots are easy, the symptoms took a year to go away - gradually.  But a
diagnosis is important because B12 deficiency causes nerve damage that leads to
severe depression and eventually complete disability, (and death I'm told.)
With treatment (the shots) one is AOK perfectly fine, life is good, thank you,
God.

So I suggest Karen - and celiacs with vitiligo - get tested for the B12 level in
the blood if she/they haven't already.  It's a simple blood test - and while
pernicious anemia is part of the celiac susceptibility-cluster, I personally
don't know if fibromyalgia is.

As an interesting aside:  I found a 1992 medical textbook on rare diseases* that
confirmed all the symptoms I had as related to pernicious anemia, but neither
doctor had ever heard of abdominal pain as a symptom:

* Physicians Guide to Rare Diseases, Dowden Publishing Company, New Jersey, USA,
1992; by __ Thoene, M.D.  The text lists the symptoms of pernicious anemia as
"weakness, easy fatigability, dyspnea, tachycardia, angina.  Patients may also
have gastrointestinal problems, anorexia, abdominal pain, indigestion, belching,
and possibly intermittent constipation and diarrhea.  They may develop ataxia, a
positive Babinski sign, hyperactive reflexes, depression, irritability,
paranoia."  It says that it has several causes:  " besides loss of intrinsic
factor, pernicious anemia can be caused by regional anteritis, chronic atrophic
gastritis, chronic pancreatitis, blind-loop syndrome, fish-tapeworm infestation,
and surgical resection."  The book adds that in North America and Europe the
disease is most common among Scandinavians, English, and Irish.

I hope this helps some folks be healed.
JD