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I received a wonderful reply from Kit. With her permission I posted it
to the fibromyalgia list I belong to & now that list is just buzzing with
chat about celiac disease. Her story really hit a nerve in there! I'm
hearing daily from people who are asking about testing, the diet, etc.
I'm so glad to be able to reach so many. These are some of the responses
I received from this group regarding my outreach efforts. Kit's letter
is last.
-------------------
Have you seen the brochure from Friends of Celiac Disease Research, Inc?
Find a copy of the test on their website www.friendsofceliac.com under
'what is celiac disease?" Info is meant for non celiacs and to
facilitate discussion since each celiac has different symptoms. Friends
will send out
brochure at no charge. Bev Lieven in Milwaukee
-------------------
I just read the statement which you were kind enough to send to me. I
wanted to comment on one thing, which you may not be aware of. Biopsies
are not without risk. I did not know this before, and would not know it
now, if my daughter had not been the victim of injury from an endoscopy.
She now has a pretty bad case of reflux, which she did not have before
this invasive procedure, from a doctor's blunder while executing the
biopsy (i.e., when the scope was pulled back up through the esophagus,
the lining was torn.) We did not figure all of this out until the two
year statute on being able to sue for malpractice had expired; otherwise
she would have sued the GI doctor (supposedly a celiac expert) who did
this to her. Now I always advise people to avoid the biopsy unless you
cannot determine your diagnosis any other way and you feel that you
absolutely must have a biopsy.
Just thought you might like to know the downside of having a
biopsy........and thanks again for sending me the letter........best
wishes, Leslie
------------------
I agree with you. The FM symptoms almost exactly match CD. And they all
have IBS. I have tried to get interest up in the alt.med.fibromyalgia
newsgroup and they just aren't interested. First here is a web page I
use:
http://www.geocities.com/HotSprings/Spa/4003/
Then many with FM also have to give up dairy. Part of the casein protein
is very similar to gliadin, which is the toxic part of gluten. And here's
a paragraph written by Ron Hoggan:
"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."
--Don.
------------------
I too had fibromyalgia for 13 years before being diagnosed with celiac
disease. Most of my fibromyalgia problems have gone, I have only been
gluten free since May 1 2002. It really bothers me that so many people
are suffering under the heading of fibromyalgia, and they have been, by
and large, shunted off to the side and called hypochondriacs behind their
backs. The medical community is disdainful of them, and I think even
allowingourselves this tag is damaging to our health care. I didn't get
diagnosed with celiac disease until I saw the first doctor whom I didn't
tell I had fibromyalgia. I think that is why he may have taken my
complaints more seriously and referred me to a GI. I am sure you can
understand how deeply angry this makes me! Kit Kellison
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