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

Thanks so much to each person who responded to my question on the possibility
that severe muscle weakness could be related to foods.  I received over 40
detailed responses.  I am still trying to get back to several people with
whom I wanted to follow up.

If the outpouring of information is any indication, there is a huge problem
going largely unrecognized by the medical profession.  The responses are full
of enormous amounts of information and I will share as much as I can.

Symptoms tied to celiac, other food intolerances:

--One person's muscle problems were weakness, hard "nodules," which were tender,
and extreme muscle tightness and achiness (this person had been a competitive
cyclist).

--Twins, age 2 and a half with CD -- one didn't walk until she had been off
gluten for a week. Muscles were too weak; also joint pain.

--Several people said that "muscle wasting" is a classic celiac symptom.

--One person experienced problems with walking and numbness.

--One person has weakness in upper arms.

--Another person said that neuromuscular symptoms are definitely connected
with CD. Joint pain also can occur with CD.

--One person said, "I used to walk with a cane."  After change in diet, symptoms
improved.

--One person had charlie horses, especially at night and "such bad pain in legs
I had trouble sleeping."  Her doctor said it was "aging."

--One person said "Muscle weakness and pain was a major symptom of mine, which
is why they thought I has FMS. I could barely walk the six blocks to work each
day without being exhausted."  (This is from Abigail Neuman, who has a wonderful
web page on her difficulty getting a diagnosis at:
   http://www.geocities.com/HotSprings/Spa/4003)

--Another person said, "I had four injuries, seemingly caused by nothing that
should have harmed me.  I feel like my muscles got damaged eating gluten."

--One person said, "I think now the muscle spasms probably came from not
absorbing nutrients properly."

--This was one person's story:  "I had awful muscle/joint weakness and pain for
a couple of years before I tried a GF diet.  I couldn't do certain yoga
exercises, running, jumping, walking any distance, things I has done easily, and
even lifting dishes to wash them was becoming increasingly painful."

--Before being diagnosed as CD, one person lost 40 lbs of lean body mass.  "I
would constantly have severe cramps, most likely from my malabsorbing."

--One person said, " I did have problems similar to what your are describing
when I was first diagnosed with CD....Vitamin D, magnesium, calcium and B12 were
all very low.  I was actually told that with the Vitamin D deficiency, I would
be in a wheelchair within six weeks."

--From a person who is not CD but allergic to wheat and other foods.  She had
strange episodes of extreme muscle soreness and muscle "failure."  "For example,
I would walk briskly and start to go up a flight of stairs only to have my
calves just BURN with the kind of pain you'd expect after having jogged 35 miles
in one day.  The pain would last for a few days each time."  (This is a perfect
description of what I am experiencing).

--One person experienced severe neck stiffness.

--Another person said, "I had severe fatigue and muscle weakness for years; was
tested for dermomyositis, fibromylgia, etc.  All of the results were negative,
but the muscle weakness continued."

Comments on multiple food intolerance:

Several people said that they did not get real relief from symptoms until they
eliminated several other foods in addition to wheat.  Most commonly mentioned:
corn, dairy, soybean, sugar.

Comments on the "typical symptoms" of CD:

A number of people said that they have been diagnosed with CD and have not had
any of the typical symptoms.  Several people said they had constipation rather
than diarrhea.  Some said they have gained weight rather than lost weight.  One
person quoted Dr. Murray (mentioned several times as a CD expert) that at least
40% of celiacs do not have the classic symptoms.  One person's symptoms included
nausea, bloating, constipation, muscle weakness, nerve pain, skin rashes.  Here
are personal comments:

"I was not underweight, very occasional diarrhea, but much vomiting (poisoning)
from wheat, etc, same as rat poisoning."  "I had none of the classical symptoms
-- my main problem was anemia off and on over the years that finally got worse
around 55....I also did not have any weight loss, but did have muscle/joint
pain."

Other things that may be causing the problem:

Some people offered suggestions on other things that may be causing muscle
problems and that are often associated with CD or food sensitivities.  All the
following were mentioned:

--Chemical poisoning -- consult a clinical ecologist.

--Fibromyalgia -- some people said they have both CD and fibromyalgia.  One
person disgnosed with FMS has had pain and burning in legs, even after being GF
for 10 years.  Others said they had been misdiagnosed with fibromyalgia when it
was really CD.  Still others said they did not really have CD, but fibromyalgia.

--Chronic fatigue syndrome

--Viral infections such as the Coxsackie virus.

--Leaky Gut Syndrome (the Newsweek article was mentioned; also comments that
docs don't take this illness too seriously).

--Hypochrondia; in other words the doctors keep telling us it's all in our
heads.

--Charcot-Marie-Tooth disease -- a progressive muscular atrophy (genetic).

--Post-viral syndrome, also called ME.

--Tendonitis.

--Myasthenia gravis

--Multiple sclerosis.

The following were given as recommendations:

1.   Go on the paleodiet. No grain (including rice), no potatoes, no dairy, no
      refined sugar.
2.   Buy the book Neanderthin, by Ray Audette:
      (http://www.sofdesign.com/neander/nmain)
3.   One person has taken anti-yeast medication such as nystatin and diflucan
4.   One person says colonics (colon cleansing) give the villa a chance to heal.
5.   One person mentioned beta-carotin, B12 pancreatic enzymes, and herbs.
6.   Another person uses vitamin B-12 shots, large doses of water soluble
      vitamins E, A, and C, plus multivitamins.
7.   One person said aerobic exercise is important to build back muscles

Other comments:

1.  One person theorized that muscle problems may actually be a result of a
non-grain diet.  Without carbohydrates, the muscles lack an energy source,
"similar to marathon runners in the last stages of a race."  He suggested
introducing pure cane sugar or 100% maple syrup.

2.  Another respondent directed me to a study done on her medical problems by
Dr. Murray.  She has CD and was diagnosed with a condition called
mononeuropathy multiplex.  After going on a GF diet, she developed increasingly
severe weakness in several muscles.  The docs finally diagnosed an inflammatory
condition that was treatable with prednisone.  She said that recovery was
remarkable.

3.  Finally one respondent mentioned the role of adrenal glands and said that
Bastyr University is doing research on the relationship between weak adrenals
and food sensitivities.

4.  One person sent an excellent reading list which is too long to share here.
If anyone wants a copy, email me.

Thanks again to everyone who responded.  I am scheduled for a work up with a GI
specialist right after Christmas.

Brenda