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Dear list,
Here is the second part of the summary on responses from those also
diagnosed with either fibromyalgia (FM) or chronic fatigue syndrome (CFS).
Again, thank you for sharing.
I was diagnosed with Fibro in 1998, then sero-negative RA and then, 2
years later, and several trips to the ER for my gut pain, they found that I
had Celiac. I tend to agree with you that gluten just might really be the
trigger for Fibro. My gut symptoms improved immediately but my chronic pain
and fatigue continues. I have finally found a good metabolic physician who
has found that I have major cell damage from being deficient in lots of
vitamins and minerals from malabsorption. I am on mega doses and I am now
improving. By the way, I'm 50 and have had symptoms as far back as 10 years
old.
******************
I was recently diagnosed CD but was diagnosed about a decade ago with
fibromyalgia. I still don't feel great ( because of the fibro and lupus )
but I can at least function and feel a bit better on the GF diet.
*****************
I've suffered nearly my entire life with FM/CFS, having been told there is
nothing physically wrong with me and forwarded to the psychologists. It was
only a year ago that I was diagnosed with Celiac, and since then my FM/CFS
has greatly disappeared.
******
I was diagnosed with fibromyalgia prior to being diagnosed with Celiac
disease. My "presenting" symptom for celiac was anemia (it's been
documented in my medical charts since my college years and I just turned
50). Last year when my hematologist said I should be scoped for internal
bleeding because no matter how much iron he pumped into me (literally...for
6 hours at a time), I still ended up anemic again. He's the one who said as
an afterthought, have them do a sprue biopsy, even though you haven't
complained of intestinal problems. I was flabbergasted when the biopsy came
back positive for celiac disease. I have been gluten-free since April of
2001 and still have what I consider to be fibromyalgia symptoms--pain,
sleep disturbance, and fatigue.
******
I am celiac and have been gf for three years. My gut is better, although I
have many other food allergies, but the fatigue is unrelenting.
******
I had been ill for well over 30 years to the point of
being home-bound for over half that time because my
fatigue was so bad (not to mention pain, etc!). I was
diagnosed 2 years ago with celiac disease--the first
diagnosis (of 17 dxes) that even began to make sense.
I have been gf since June 2000, and have made much
improvement, but because of my near-death state
initially (I am not exaggerating here--I nearly died
on 2 different occasions in 1999), I still have quite
a way to go to be at full health. I am able to walk
now--and can now leave home, drive myself, and shop
about 2 hours at a time, and still have enough energy
to have a "normal" day when I get home.
I was just diagnosed with CD last year, about six years after my
fibromyalgia diagnosis. Several months after going GF, I realized that I
had
no FM "flareups" and very few symptoms. Now, a year later, I feel FM-free!
I'm convinced I didn't have FM at all. The symptoms appear to have been due
to unmanaged celiac disease.
****************
nce I went gluten free my irritable bowel syndrome just
disappeared. How weird! (Right!)
But, unfortunately though, I still have all my fibromyalgia symptoms. My
muscles just ache terribly all the time, it's incredibly frustrating. I
wish
I was as lucky as so many others I have heard have gotten better after
going
gluten free.
**************
I was diagnosed with fibromyalgia 20 years ago by a rheumatologist. It
was called fibrositis back then. ...20 more years of gluten, misery,
diarrhea (oh, I mean "Irritable Bowel Syndrome") and we get to now, when
my current doctor, (the one who criticized the fibromyalgia misdiagnosis),
then misdiagnosed me with MS!
I finally found the book "Mayo Clinic on Digestive Health" which helped me
diagnose myself. The first doctor I asked to test me refused. Bad timing
on that, because my pseudo-MS was getting worse all the time and I now
have permanent nerve damage. The second doctor finally agreed to the
blood tests and ta-da! - Positive on the antigliadin and tTG.
******
I was
diagnosed with fibromyalgia 4 years prior to my diagnosis of Celiac. I
was pretty much unable to function. Now that I have been on the gluten
free diet I have almost complete relief of my symptoms. I firmly
believe that in my case, the doctors labeled me with fibromyalgia to
shut me up and it was really undiagnosed celiac disease causing my
problems. It upsets me when I think about it. The only reason I was
tested for celiac was that thankfully, I started with gastro symptoms
and it became more"textbook". My doctor was on vacation at the time and
the doctor on call had a roommate in medical school who had it so he was
familiar with the disease. After almost five years of suffering, a
simple lab test was the definitive answer.
My chronic fatigue syndrome and fibromyalgia symptoms
cleared up when I went gluten free. I have residual
muscle symptoms from not having been able to work the
muscles properly for over 10 years (from my first
FM/CFS diagnosis to gluten intolerance diagnosis), but
I now tolerate exercise just fine
****************
I developed fibromyalgia when I was 38. I was a marathon runner... The
fibro went undiagnosed for a year and leftme in so much pain that I could
barely function. (about four years...) or so later, I was told I also had
Sjogren'sSyndrome. Another blow to my health. And then came celiac disease,
which also went undiagnosed for over two years. All I can tell you is that
the fibro is much better being gluten-free. It's not gone......but it sure
is better!
**************
My celiac disease became fully symptomatic at about the same time as I
contracted CFS, 26 miserable years ago. Being on the GF diet helped a
little with reducing the fatigue and migraines, but not a lot. I've been
scrupulously GF for 8 years now.
*****
I have been diagnoised with both Celiac and Fibromyalgia, I have been
gluten
free for about 4 years and maybe that's why I can deal with Fibromyalgia
better than some others that I meet.
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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