<<Disclaimer: Verify this information before applying it to your situation.>> 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 ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. * Please include your location in all posts about products *