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

I cannot urge you strongly enough to be tested!  My daughter (now 20)
was diagnosed with fibromyalgia a year ago.  She had been sick for 5
years and was becoming increasingly debilitated.  In December I brought
her home from college as it was getting so bad she was spending most of
the day in bed, in pain.  I thought I was going to be spending the rest
of our lives with an adult daughter in a wheelchair.  I spent all my
time researching Fibromyalgia and CFS.  I belonged to the fibromyalgia
listserve, reading hundreds of e-mails looking for help.  Then, doctor
#15 tested her for Celiac Disease!  Noone else had ever mentioned it.
She went gluten-free the next day.  That was Jan 30 of this year.  After
about 6 weeks, slight improvement was noticed.  After 3 months totally
GF, there was obvious, substantial improvement.  2 months later she got
a job, a month after that, in June, she went to Maui to work, visit her
dad, and surf!  She is a new person!  Actually, she is the old Ashleigh
we haven't seen in about 6 years.  She worked 8 days of 10 hour shifts
last week and was exhausted and wiped out.  After a night's sleep, she
was all better and out to surf.  She is going back to Ohio to school in
a month and will be living in an apartment doing her own cooking!  This
is nothing short of a cure.  I don't know what Fibromyalgia is or isn't
but my daughter's symptoms were definitely diagnosed as FMS.  She had
all the tender points, severe pain and exhaustion after any exertion,
and too many other symptoms to list.

I personally think the malabsorption caused by the CD was responsible
for the muscle pain and lack of sleep, etc.  I know FMS people take
Magnesium and other supplements but if the gut is not absorbing those
nutrients, you're still not getting any, no matter how many you take.  I
think everyone with CFS and FMS should be tested for CD.  I've read
where some in the medical community agree with that.  Depression, also a
hallmark of FMS, CFS, and CD!

You can have CD and have no symptoms, as I'm sure others on this list
will tell you.  I would urge you to be tested just with the FM dx but
with a relative with CD, absolutely.  I've tried to spread the word to
the FMS,CFS community but haven't gotten very far.  Many people are
resistant to the notion that what you eat can cause such severe
symptoms.  I was in that group myself before I saw this with my own
eyes.

http://thyroid.about.com

There's lots of information about fibromyalgia there.

My fibromyalgia got so much better after I went gluten-free that I
thought the fibromyalgia was caused by the gluten.  But also, get
checked for hypothyroid and if the TSH is ok but high normal, see if you
can get treated.  This helps some people.

I had a mild case of fibromyalgia for 15 years before being diagnosed
with celiac disease.  The spasms, fatigue, and brain fog cleared up
within a week or two of eliminating gluten from my diet.

My pain is gone since going gluten free.  My good friend does not have
Celiac but had terrible bone pain, rheumatoid arthritis, had to walk
with 2 canes-she went gf and now is out of pain, walking without
assistance, and losing weight.

The following post was forwarded to me:

<<
I know you have studied celiac disease for a long time.  However, I need
to disagree with the statement that fibromyalgia indicates celiac
disease.  It has been proven that persons with fibromyalagia have a
decreased amount of serotonin and an increased amount of substance P in
their spinal fluid.  This indicates it is a result of not enough
serotonin in the brain.  Many of us who suffer from fibromyalgia do not
have any problems with the digestive system at all.  There are also PET
scans that indicate that fibroymalgia patients have less dopamine
activity in the brain indicating it truly is more a brain disease than
celiac.
>>

The poster's first point differentiating celiac disease from
fibromyalgia on the basis of reduced serotonin in fibromyalgia may be
unaware of the finding that celiac patients have fewer serotonin
receptors on their platelets (1).  Although I don't know about the
spinal fluid, elevated levels of substance P have also been reported in
the intestinal mucosa of celiac patients (2,3,4,5).  A lack of digestive
problems does not rule out celiac disease, as one of the foremost
researchers in that area has reported that 50% to 60% of untreated
celiacs are asymptomatic (6).  Altered dopamine activity has also been
reported in celiac disease (7).  As regards the poster's contention that
it is really more a brain disease than celiac disease, the connections
between celaic disease and altered brain perfusion (8), epilepsy without
cerebral calcifications (9), epilepsy with cerebral calcifications (10,
11), a wide variety of neuropathic symptoms (12), and a number of
psychiatric ailments (13), all counter the poster's perspective.
Finally, if Suzanne Romey says that her fibromyalgia symptoms go away
when gluten-free, and return when she eats gluten, I believe her.

I have been 100% gluten/casein-free for 4 months.  Also, 2 months ago, I
stopped eating beef, 100%.  My fibromyalgia pain is almost completely
gone, and I have began a limited swimming program.

The Celiac Disease Foundation recommended at their annual meeting Nov.
2000 that anyone with fibromyalgia should be tested for celiac disease.

I had the cd blood test, tested negative, and went on the gf/cf diet
anyway...and after I deleted beef from my diet, I got better quickly.  I
have no clue if my improvement was from giving up gluten, or dairy
(casein), or beef; or the combination of the three.


My sister has been diagnosed with Fibromyalgia.  She does not know if
she has CD but I do and my daughter does.  We are pretty sure my father
had it but was undiagnosed (he had many of the same symptoms).  I firmly
believe my sister has CD.  She has been tested for it but we are still
awaiting the results.  I believe the pain my sister experiences is due
to CD and not fibromyalgia.

My "fibromyalgia" is due to a variety of non-gluten foods, including the
nightshade family (tomatoes, potatoes, green/red peppers, eggplant),
dairy products and caffeine.  A doctor did not diagnose this - I just
ached, muscles and joints.  I went on an elimination diet to see if I
was allergic to wheat, then gluten foods (or possibly celiac) and found
my aches improved, but there were still times when I would get worse.
Eventually I saw a pattern related to these foods.  I aches so bad it
was hurting to turn door knobs, it hurt to carry a gallon of milk from
the car to the refrigerator - much less anything heavier.

Yes, I had Fibromyalgia and Chronic Fatigue syndrome.  Both went away on
GF diet.  I also had a lot of the typical CD symptoms which also went
away on the GF diet.  I had several more unusual symptoms that went away
on the GF diet - rapid heart beat, tinninitus, etc.

I would try the GF diet and see if you notice any improvement.

I too have been diagnosed with Celiac and Fibromyalgia.  I was diagnosed
with Fibro.  10 years ago.  I also have other serious illnesses besides
the two mentioned.

My advice is to get tested for the celiac.  The genetic link is strong.
The gluten free diet does help with Fibromyalgia symptoms, even better,
a clean, whole foods diet.  With the diet, I have all of my illnesses
under better control, and most all FM symptoms are gone.

Here is what I believe after 10 years of dealing with it and 3 of those
years being a Fibro.  support group leader.

Fibromyalgia (FM) is real.  It is a collection of symptoms that make up
a health disorder, that is why it is called a syndrome and not a
disease.  There is a push to lable it a disease.  Which I am all for, it
will help with the disability aspect of it, sometimes you find it listed
as such.  There is a genetic predisposition in each of us who has
Fibromyalgia.  I believe it is a combination of genetics, lowered immune
system function and environmental situation.  Sometimes FM comes about
suddenly, or it come about slowly, a progression of symptoms that are
finally identified.  However, there is a lot of misdiagnosed / misguided
people running around.  (doctors and patients alike)

FM / CIDP / CFIDS (Chronic Fatigue Immune Disorder)/ ME (European
version of CFIDS) / Multiple Chemical Sensitivity / Depression / Lupus /
Thyroid problems, and any other autoimmune dysfunction you can think of,
all have similar symptoms and associations that go with it.  And they
are all connected to each other in some way or another.

The first 3 years of having FM.  were the hardest, I had over 25
symptoms on a daily basis!  And some of them were really strange,
sometimes no clear connection at all to another symptom.  And sometimes
symptoms are the result of another illness that has yet not been
identified.  You are wise to question and seek out other options for
yourself.

I believe there is a core health problem or issue for each of us.  The
core problem is different for each of us.  (no two people can have the
same exact car wreck) Lots of people, for example, after a car wreck or
some other traumatic injury / experience, be it physical, emotional, or
psychological.  FM is triggered and can be one manifestation of the core
illness / issue.

Three years ago, I finally found my core illness, and the doctor who
saved my life.  I still go to him for treatment.  He lives four hours
away from me, but it is worth the trip.  I kept searching until I found
the core problem.  For others, the search stops at Fibro.  It is up to
each individual how he / she heals and creates a positive, hopeful
quality of life for themselves.

Some people have just one or two symptoms and go on with life with just
a minor inconvenience.  For others, they require a homebound existence.
And then there is everything in between.

Dealing with Fibro.  takes a self-advocate and multidisciplinary
approach to your life and well being.  It is a total life change and
requires the ability to see beyond the day and look to the next day with
hope.  People can and do get better with Fibromyalgia.  They lead high
quality lives (remember, quality is different for each of us) Also
remember that with any illness it is not a straight road to recovery, It
is one step forward, two steps back!

Yes be tested- but realize that theere is a very high incidence of false
negatives.  I have several biopsy diagnosed relatives.  My biopsy was
negative, but I went GF anyway.  My intestinal problems and migraines
went away, as did a painful problem with joint swelling in my hands.  So
get tested, but even if negative try a GF diet.  I had thought I would
try it for a year to see if I improved, but after only two weeks there
was a definate difference and after two months I was a new woman.

I was diagnosed with Fibromyalgia many, many years before I found out I
was a Celiac.

I am 54, diagnosed Celiac at 52 by endoscopy/biopsy.  It hit me full
force a few months before, but famous Loyola didn't have a clue.  I kept
a log of foods I ate, what I drank, supplements, and all symptoms for
months, then happened to go to a gastroenterologist who immediately knew
what it was.

The blood tests didn't show it - IgG was borderline, others negative.
tTG blood test didn't exist until a year later.  Endoscopy/biopsies
showed it clearly.

Within a few days of going gluten-free, all pain was gone.  I had
started dropping weight, and that stopped in 2 weeks.

I am intolerant of medicines, since both Fibromyalgia and Celiac trigger
allergies/adverse reactions - so U of Chicago rheumatologist ordered me
to do Yoga and Meditation for Fibromyalgia instead.

It works.  If you have a good Hatha yoga instructor who focuses on
coordinating the correct breathing with each posture, and focusing on
the breath, it will work miracles for your Fibromyalgia

I have both FMS & CD.  I'm sure you'll hear from people who said that
going gluten free cured the FMS because I've seen it said on this list.
But I wish it were so easy.  I have been gluten free for 4 years now.
I've had FMS (or was finally diagnosed after a couple of years of seeing
a lot of different doctors for a lot of different suspected diseases)
for about 8 years.  Being gluten free helps a lot of things that seem
like they might be FMS.  For example, I get the brain fog from both FMS
and a gluten-laden diet.  When I am gluten free, I still get it but not
as often and not for as long a duration.  I still get the
muscle/joint/bone aches and pains.  And how I wish eating a gluten-free
diet could make that go away!  Anyway, the best thing I've found to cope
with the FMS is mild exercise -- something I've fought against my whole
life, being a totally non-athletic person!  But here I am in my mid-50s
joining and actually going to a health club!  Will wonders never cease!
I hope this helps.

By all means you should be tested.  I was diagnosed with FMS classic
symptoms.  I had no diarrhea or weight loss.  My Dr.  did the celiac
screening blood work ( grasping at straws b/c I was getting steadily
worse) and mine was slightly positive.  I went to GI doc who specializes
in CD and my biopsy was normal .  She told me to do gluten free anyway
and within 2 weeks 80% of my FMS was gone.  Prior to the CD dx my
primary Dr.  was talking with me about disability becasue I was so sick.
My GI doc says 20% of FMS is undiagnosed celiac.  and that people like
me with + lab and neg biopsy and repond to GF are a small but real
variation of celiac.  Dx was 18 mos ago.  I am off all but one of the
MANY prescriptions I was taking 18 mos ago.

The symptoms of gluten intolerance are very similar to candida symptoms.

This is at least a partial explanation for what happens in FMS, and why
guai seems to help.  See www.guiadoc.com for something that seems to
help a lot of FMSers, but not all.  You still need to find and deal with
the actual causes of the FMS, and that is what these people do not do.
The HG part for example, does not address the fact that many
"hypoglycemics" are merely having blood sugar attacks every time they
eat something with wheat in it.  The gluten free diet can actually be a
lot easier to deal with especially if you get results with it.

http://www.americanhs.org/about1.htm

Here is a simple fun test I have been trying on people with apparent
gluten intolerance symptoms.  Most hate the smell of copper.  My husband
has always liked the smell of copper, says as a child he would carry a
small peice sometimes in his pocket just so he could take it out and
smell it.  Think of all those people out there who swear by a copper
bracelet for their arthritis!

See what you find.  Anyone who is trying to get relatives tested, or is
waiting for results, please try this test.  Those who have been deironed
may want to test before and after a maintainence phleb.  Those people
may find the smell strongly attractive before, barely detectable a few
days later.  I really want to hear what you find, please!!  I am a
massage therapist, meet LOTS of people in chronic pain, and if I can
recommend the right test for them they will find out quickly if they
have something they can treat to make themselves better.  if copper
turns out to be generally attractive to the iron overloaded, it'll be an
easy trick to convince co workers that you suspect should get tested.
Do it in a group setting, and when you pass the penny on to one of those
really pale women, she'll swear it smells HORRIBLE.  The difference in
reactions is pretty convincing that people are truly different.  Get a
penny, pre 1980 as they are now zinc with copper coating.  Rub it in
your hands, then sniff your hands and the penny.  Can you smell
anything?  (Hot sweaty weather works best) Does it smell good or bad?
The stronger the reaction, the more likely there is something going on.
Explanation:  Ferritin combines tightly with iron, loosely with zinc
copper.  There are other proteins to bind these last two, but
availability of ferritin to carry them is obviously going to affect
their availability in the body.  Many iron overload symptoms can be
found on lists of copper deficiency symptoms.  So an iron overloaded
person may be low in copper and thus his body seeks it out via taste and
smell.  Conversely, a person with malabsorption of iron and zinc will
dislike copper.  Malabsorption of these minerals is common in carriers
of genes for Cystic fibrosis (4% of us Population) and gluten
intolerance (Possibly 10% of population.  Their body tells them to avoid
copper, because apparently they CAN absorb it,and it's accupying
relatively too much of their ferritin.  This is my theory anyway, and if
you all will try it,, and try it on friends and relatives, we'll see if
it works and to what degree we can depend on it.

YES YES YES YES YES CELIAC IS ONE OF THE TWO BIG CAUSES OF FMS!!!  I
have been researching FMS for several years, and gluten intolerance is
rampant in it.  The other big gene involved is for iron overload, so
look into that one too.  Some people have both.  I'm always willing to
send info, that's what I do for fun, is raid the guai list for FMSers
with apparent symptoms of one or the other disease.  Look up Iron
Overload Diseases and the American Hemochromatosis socioty.  You can
copy and paste the names for your search, or just look up iron overload.
It and celiac are America's best kept medical secrets.  There's no
profit in CURING people, it's more profitable to wait and repair or drug
the damage later, when they have diabetes, heart disease, arthritis, or
cancer.

I would suggest you to go to this other excellent site:
   http://forums.delphi.com/celiac/start/
Very caring and knowledgeable people to answer your questions.  I have
voluntarily posted thousands of GF recipes.

Please get tested! Dorothy

I was dx with fibro 9 years ago.  I refused to believe the diagnosis and
went from doc to doc in search of something that was "curable".  I had
aches and pains everywhere.  My hips hurt so bad I could barely walk.
My knees and feet ached so badly no massage could help the pain.  I
would soak my feet and cry because I couldn't get any relief.  I
couldn't sleep at night and took Klonopin, Trazadone, Amitryptiline (?),
and various other drugs.  I was cranky and irritable, brain fog, zombie
half the time.  Dry skin, gas, bloating, diarrhea, digestion problems,
balance problems, vision problems, memory problems.  But mostly I
remember the pain and being tired.  I went to a chiropractor who did
he-ne therapy, (cold laser therapy) and my symptoms became manageable.
I stopped taking the sleep medication after 4 years because I figured
after that long and I still wasn't sleeping why am I taking medication?
I started sleeping through the night immediately.  So, for 4 more years
my symptoms were very slight.  Then I was diagnosed celiac last year and
went gf.  My symptoms have totally dissapeared and I am convinced it was
all the gluten.  I don't know, maybe I'm still in denial but the
symptoms are GONE and I feel so much better.

I have had the same thing happen in my family.  I have celiac and my mom
has fibromyalgia.  After I read about the connection she went gluten
free.  She has been GF for since last October and her fibromyalgia
symptoms have disappeared.  One time I made Wheat free brownies only to
find out that they had gluten in them and moms fibromyalgia pain came
back.  For her she didn't get test she just went gf and it has paid off.
I hope this information helps.

The symptoms of celiac disease are very similar to FM, and I know many
women that previously had an FM diagnosis, then learned that they really
had problems with gluten (one has a web page at:
http://www.geocities.com/HotSprings/Spa/4003/).  Many of them, though,
have also had to give up dairy.  (Part of the casein protein is very
similar to gliadin, which is the toxic part of gluten.)

The anti-endomysium antibody test has been shown to be a very reliable
indicator of the presence of celiac disease in those who are not IgA
deficient.  Since endomysium tissues penetrate into the interior of each
fascicle, covering and separating each muscle fibre, an autoimmune
attack on endomysium tissues should result in the symptoms we call
fibromyalgia.  Ergo:  celiac disease should usually be accompanied by
fibromyalgia, and fibromyalgia should usually herald the presence of
antibodies which are diagnostic for celiac disease.