Fms And Gluten Free Diet

[Lakeperson]

I was diagnosed with Fybromyalgia about 12 years ago but have been hearing and reading about how a gluten free diet has helped many. I was tested for wheat sensitivity and it came back negative yet I have every nearly symptom on the list. My main symptoms are joint and muscle pain. I have a long history of diarrhea/constipation problems, severe menstrual cramps as a teenager, sinus and nasal congestion for many years, depression, trouble sleeping and Menier's disease. 10 years ago I was diagnosed with mercury toxicity due to the amalgams in my teeth. A blood test for that had come back negative too but having them removed made me feel and function better than I had in years. I also went through 2 celations (sp?) with DMSA.

I feel strongly about trying this gluten free diet but I guess I need some confirmation that this is a worthwhile thing to do.

Thanks

Sue

[Guest barbara3675]

All I can tell you is that I, too, have fibromyalgia, for just a little over a year now and was dx with a gluten intolerance last fall through Enterolab. If you haven't tried that source for testing, you really should. My fibro, now, is confined just to my arms and hands and if I would stay off the sugar food, I know it probably would be even better than it is!!!! Sugar is NOT good for fibro people, actually anyone, truth be known. There definitely is a connection between fibro and gluten intolerance, however, most doctors haven't quite gotten that far in their reading yet, so they don't believe it. Hang in there, evenually they will and until then, you just have to figure things out on your own.

Barbara

[KaitiUSA]

Fibromyalgia is connected with celiac and you seem to have a bunch of symptoms that can come with celiac. You should consider getting tested for celiac. The Enterolab is a great recommendation...they can detect malabsorption, celiac genes, gluten sensetivities, and so forth. www.enterolab.com That is their website and you will be able to find out more on there.

Even if you are not celiac the gluten free diet may still help you....

Good luck and hang in there....if you have any questions let me know

[Guest nini]

Fibromyalgia is def. connected to celiac. I was dx with severe Fibromyalgia about 8 or 9 years ago, and the dr. had said that I would probably be in a wheelchair in 5 years or less. Staying active, massage therapy and chiropractic helped keep me out of a wheelchair, but didn't keep me out of pain. Several years of Electroceutical Stimulation Therapy and Ultram and Diclofenac helped with the pain but it didn't go away. 2 years on the Gluten Free diet and I am completely off of the fibro meds and haven't had the Elec. Stim for over a year. So yeah, I believe there is a def. connection and one day the medical community will figure out the link.

[cdford]

There is a strong correlation between celiac disease and fms. It is so strong that some physicians are now stating in published articles that anyone diagnosed with fms should also be tested for celiac disease.

There is a difference between a true wheat allergy and the autoimmune dysfunction of celiac disease. Some have both, some do not. My celiac disease is far more sensitive than my daughter's, but only she tested positive for a true wheat allergy.

The simplest thing to do is carefully consider whether you want to be tested for celiac disease. If so, ask your doc to do the celiac blood panel. If this is positive, you know that the fms may have its roots in the celiac disease.

I know many doctors want you to go ahead at that point and have the biopsy done, but it is not worth it to me. The bloodwork is enough. I was not going to wait around for another couple of miserable months while they scheduled a test that might or might not show actual damage to the intestinal tract. The endocrinologist agreed. Apparently he and others have come to believe that the damage to the intestinal tract is one of the last things celiac disease does to the body, not the first. It shows up in many other ways long before the damage there is detectable.

I have seen such amazing changes in the fms and its constellation of symptoms since going gluten-free that I recommend the testing to every fms patient I come into contact. What can it hurt? A simple blood test might change your life...literally.

[Guest nini]

donna, you are just so cool! I agree with you on encouraging everyone who has been dx with fms to be tested for celiac disease. And, if by spreading the word about this we can improve the quality of life for more people than lets DO IT!!!!

[Guest barbara3675]

WOW...this is the first time I have heard this many people making the connection between fibro and a gluten intolerance. My doctor just doesn't think there is any connection. I had been thinking that I was doing so much better and I guess generally I am, but today I am in the worst fibro-flare. I hurt all over and am not making the connection as to why. I really did work very hard over the weekend, and maybe it could be that and also, I have heard, fibro can be seasonal.....with spring and fall being very bad times for fibro sufferers. The best way to discribe this for non-sufferers is like when you have the flu real bad and you just hurt all over--------fortunately I thought I really had a handle on this. I should mention that I take a major amount of magnesium with malic acid which was suggested by the owner of my health food store. He suggests that those that suffer from fibro or migraines seem to be lacking seriously in magnesium. I also take Mobic daily for pain. Between those, they work for the most part. What do the rest of you do for your pain?

Barbara

[Guest nini]

When my pain was real bad I was taking Ultram, Diclofenac, and Flexeril, I was also getting the elec. stim, now all I take is the occasional Advil or Tylenol. When I have a real bad flare I use my TENS unit and pack my body in ice packs... crazy it seems, but it works. Seems like the longer I am gluten-free, the less often I am having flares.

[lotusgem]

This is an interesting thread! My experience was a little bit different and I think bears mentioning. First, I am a self-diagnosed celiac. I have all the classic symptoms and hereditary indicators, and responded almost immediately to the gluten-free diet. But before I was able to figure this out, I had been having major problems with stiff, painful joints and widespread muscular pain. My fear was that it was arthritis and so the research began. I consulted an online rheumatologist (located in South Africa!) and he kindly listened, said that it could be arthritis, but told me not to rule out fibromyalgia. I'd never heard of it, and started to educate myself. Meanwhile, the pain and joint movement limitations were really starting to create problems and I consulted a rheumatologist, this time, in person. As is so often now the case, I never even laid eyes on the doctor, but instead was received by a physician assistant. (Still paid a specialist's price, and if I weren't so naive, I would never have stood for that!) Anyway, I told him my symptoms and my suspicions. He said that a diagnosis was very difficult and could be elusive and ordered x-rays of the joints in question. There was no damage to the joints which would normally be present with arthritis, yet there was LOTS of pain. He told me that the best he could do would be to give me cortizone shots to the joints every few months. That struck me as a total non-solution and my research continued. What I finally decided, was that the conventional medical community was not helping me, and I needed to try "alternative medicine." I went to a traditional Chinese medicine (TCM) practicioner. I was treated with accupuncture (it really works!) and Chinese herbal drinks and did benefit greatly. BUT, one big change for me was my diet. The Chinese have a completely different way of looking at illness. It is quite fascinating and to Westerners, perhaps confusing and odd. It would be too time consuming and difficult for me to try to explain. But, THEY FROWN ON WHEAT CONSUMPTION, believing wheat to be "a sodden, damp food," in other words, most unwholesome and the cause of many health problems. So I started eating rice, sometimes three times a day, and avoiding "sticky, sweet fruits" (SUGAR!), another no-no in TCM and eventually the joints loosened up again and in the five years since, have not had any more trouble. Now, during this time, I was not gluten free, and still had many other troubles, because as yet, I hadn't made the Celiac connection. But I got a whole heck of a lot better! In conclusion, my point is that wheat avoidance is part of the program for getting over fibromyalgia, and for that matter, many other illnesses, in TCM.

Paula

[tarnalberry]

The only real way to tell if the gluten-free diet will be a good thing to try is to try it. It's tricky, but as long as you're aware of getting a wide variety of foods, it's a very healthy diet. Whether it helps you or not is the answer you need, and trying the diet only way to actually get that answer. :-)