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

List mates, I have fibromyalgia & belong to an on line support group of
about 1500 members. I believe that many of my fibro sisters probably
have CD.  I've been trying every angle imaginable to spark their
interest in getting screened for CD.  I've tried the you-could-die-of-
cancer angle, the it's-probably-CD-not-IBS mantra, the it's-probably-not-
carbohydrate-intolerance-but-CD twist, the GF-diet-can-prevent-lupus
appeal.  I got very few responses.  But, when I finally told them about
something that I learned at the GIG conference they responded like wild.
I've been trying all day just to keep up with the inquiries for more
information.  What was the hook?  CHRONIC FATIGUE!  One responded by
saying that she read the websites & didn't think she could possibly have
it because she's over weight.  I posted another message to the list
telling them that most celiacs are either at normal weight or overweight
at the time of diagnosis and that 10% of celiacs are actually obese.  I
told them about one GI specialist who diagnosed a 400 pound woman with
CD who lost 50 pounds rapidly after going GF.  That brought in another
flood of interest & requests for additional information.  Apparently
most folks don't seem to mind having chronic constipation or diarrhea,
rashes, 100 times the risk of certain malignancies, migraine headaches,
high risk of Lupus & other autoimmune disease or even having an
incurable disease that is destroying their organs, but they HATE FATIGUE
& BEING OVERWEIGHT!  Here's the information I gave to each interested
respondant.  Please feel free to copy it, edit it, correct it (LOL!) &
forward it to anyone interested. ~Valerie in Tacoma, WA

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Symptoms of celiac disease can overlap with so many other diseases, it's
difficult to differentiate from fibromyalgia, lupus, chronic fatigue,
IBS, colitis, food allergies, etc.  Celiac disease is a hereditary
autoimmune disease in which gluten, the protein found in wheat, rye,
barley & oats, causes the body to make antibodies against it's own
organs. Celiac is not a wheat allergy & cannot be "outgrown" or
eliminated by chiropractic or allergy shots.  The only effective
treatment for celiac disease is a gluten free diet for life.

The gut is usually the primary organ damaged, but the damage can also
occur to the mouth & teeth, liver, thyroid, spleen, skin, nervous system,
muscles bones & other organs.  Because the gut is usually the primary
complaint, celiac actually means "bellyacher."  Common presentation
includes failure to thrive in children, anemia, poor dental health,
chronic fatigue, bellyache & bloating, diarrhea and/or constipation,
mental confusion, schizophrenia, memory loss, learning disabilities, bone
pain, muscle aches & cramps, canker sores, fissure in the tongue, skin
rashes, migraines, unexplained weight loss or weight gain, hair loss,
neurological disturbances (ticks & muscle twitches, etc).  No one celiac
has all these symptoms.  They usually only have one or two.  However some
celiacs have NO symptoms for a long time.  Celiac disease can remain
"silent" with no obvious outward symptoms for many years while it slowly
destroys organs & health in the process.  Because celiac is such a
serious hereditary disease & often associated with other autoimmune
diseases such as type I diabetes, lupus, alopecia, sjogrens, every family
member with autoimmune disease should be evaluated for celiac. Early
diagnosis brings complete remission & can prevent many health problems in
the future.

Celiac disease is found primarily in people of European extraction.  It
is rarely seen in blacks or Asians.  Celiac is so rampant in Europe that
many European countries consider celiac disease to be a major &
preventable public health problem.  Some countries regularly screen
school age children for this disorder. Celiac sprue is not a rare disease
as most US physicians have been taught to believe.  Recent research has
found celiac as prevalent among us as it is in our European cousins.
(Between 1 in 250 and 1 in 160 of European extraction have celiac
disease. That's more than crohn's & colitis put together -- in fact
celiac is often misdiagnosed as colitis, GERD, IBS & many other GI
disorders.)  The only thing rare about celiac sprue in the US is getting
it diagnosed before the patient is half dead.  If undiagnosed &
untreated, celiac disease can lead to many serious complications such as
lymphoma, malignant cancers, lupus & other autoimmune disease, thyroid
disease, severe malnutrition, mental deterioration and even death.  This
is especially sad considering that the damage from the disease can be
prevented with a gluten free diet.  The good news is that the vast
majority of celiac patients symptoms can be quickly reversed with
initiation of the diet.  (It's made a tremendous difference for me. I
feel better than I have in years.)

Families that carry the gene for celiac often have other autoimmune
diseases present such as alopecia (hair loss), lupus, fibromyalgia,
sjogren's syndrome, geographic tongue, microscopic colitis, hypothyroid,
atopic dermatitis, type I diabetes, chronic anemia.

These are the blood tests that the physician should order as a
preliminary screening.  Any less than this is insufficient.

(1) IgA gliadin   (ELISA)
(2) IgG gliadin   (ELISA)
(3) IgA endomysium  (IFA)
(4) IgA Reticulin  (IFA)
(5) tissue transglutaminase (ELISA)

These blood tests will tell you if you have gluten sensitivity (celiac
disease) which has been found to possibly be the cause of so many
autoimmune diseases.  The first two tests show sensitivity to gluten
(wheat, rye & barley protein), but are sometimes false negative.  The
third test is 99% predictive for celiac disease & is more reliable.  The
fifth test is so reliable, it is considered by some doctors as a
difinitive diagnosis without a biopsy.  But if your doc wants to do a
biopsy, don't argue.  It's important & really not a bad experience.
See: http://www.celiaccenter.org/index.htm  (University of Maryland,
contains latest research information) http://www.celiac.com/  (contains
food lists & ordering information on tons of products)
http://www.enabling.org/ia/celiac/  (on line support group -- join it
you will learn a lot)

Dr. Fine, a celiac himself, is a physician in Dallas, Texas who
specializes in researching & diagnosing celiac sprue.  His website:
http://www.finerhealth.com/   EnteroLab: http://www.enterolab.com  His
tests are fast, very sensitive & non invasive.  He tests for the genes in
cheek swabs or the celiac antibodies in stool samples. For this reason,
it can all be done via internet order & mail service.  (I actually sent a
frozen stool sample for my son through Airborne Express!  All his tests
came back positive for celiac.)

Your doctor probably doesn't know how prevalent celiac is, so don't let
him discourage you from getting these tests run.  If you are overweight,
tell him that Dr. Fasano, a leading researcher from University of
Maryland, recently diagnosed a 400 pound woman with celiac disease.
When she started the GF diet, she lost 50 pounds almost instantly!
Here's a great article from AMERICAN FAMILY PHYSICIAN to print out &
give him.  This article is from a legitimate medical journal with only
"published" physicians referenced.  No decent doctor can ignore hard
facts like these.  And it even has colored picture to hold his
attention! http://www.aafp.org/afp/980301ap/pruessn.html   Also include
this short little diddy from the University of Maryland celiac center.
It contains information on the prevalence of CD in the US population.
http://www.celiaccenter.org/frm_research_update.htm

Untreated celiac disease is a very serious condition that can go into
remission with the appropriate diet. The diet has also been found to
significantly reduce the symptoms of other autoimmune diseases.  Relief
from acute symptoms are usually comes after only days or weeks on the
gluten free diet.  Complete remission can take 3 to 6 months with strict
adherance to the diet.