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Listmates,

You folks are just great. Since posting a query last night asking if anyone has noticed an affiliation between imflammatory, non-rheumatoid arthritis and celiac disease, I've received 15 notes from various folks, each describing his/her own similar situation. Every one describes either joint deterioration or muscle/joint pain or both, associated with CD. 

Below you'll find my summary of replies, a caution about using COX-2 inhibitor anti-inflammatory medications and a couple things I've found helpful. I'd love to continue hearing from people on this and will summarize replies for the list if they keep coming. Many, many thanks for all the great information. I had thought I was "the only one" with this mysterious inflammatory joint deterioration but it appears to be an experience that a number of us share.

SUMMARY
Most say that a GF diet helped, sometimes over many years, and in some cases completely eradicating the pain. One person said that, unfortunately, the GF diet has not helped her arthritis and that the joint deterioration is continuing. 

One person suggests using high doses of B vitamins and says that any gluten exposure causes a flare-up.

I heard from one woman who, hoping that the GF diet would allow her to go med-free, stopped taking Vioxx but had to go back on it because of pain. Someone else, on the other hand, described muscle inflammation and pain, helped (along with fatigue) by GF diet.

A couple people suggested that my description of my own (inadequately diagnosed, somewhat mysterious) inflammatory arthritis is probably a different disease altogether, and suggested that I get tested for rheumatoid arthritis, lupus or some other autoimmune disease (fyi, thanks but have done all this -- with results negatatory).

One person wrote:
"...After being on a gluten free diet for a few years my arthritis went away and I am off medication.
Now, the inflammation doesn't go away fast, it is gradual.  I have been a celiac for 13 years and always been on the GF diet for those 13 years and never went off.  After about 2 or 3 years I noticed that my arthritis had been getting better or I didn't notice it as much.
Now, the arthritis has gone away completely.  If, by accident, I ingest gluten, my arthritis returns with inflammation and redness.
I have read that this type of arthritis is associated with CD."

Someone else, noting that she's had a lot of testing for RA and other autoimmune diseases with inconclusive results, said, "I take plaquenil which does help with my joints and the pain/stiffness."

One arthritis sufferer said that gluten seems to cause an auto-immune attack on several of her organs and that, if she eats gluten, "the problem is acute for several days (can barely walk or pick anything up) but gradually clears up over about three or four weeks."

Someone said she'd found that dairy products increase her pain.

MY EXPERIENCE
My own experience is that, having been GF (with some mistakes) for about a month now, I've been able to slowly discontinue using anti-inflammatory meds (I was taking 200 mg. of Bextra a day and was previously unable to move without it). So, you can see that's a pretty great report in a very short while. I was dubious that diet alone could address the bone pain because, well, the damage is still there, regardless of what happens to the inflammation, and bone-on-bone contact just really hurts. But my doctor, saying that I would be amazed at how large a component of the pain was actually inflammation, urged me to give it a try. I must say he was right. I still have a good deal of pain (because those joints are badly eroded), but I am feeling better without meds than I did with them, which I find pretty astonishing. I'm prepared, however, for all this progress to fall apart, because it is also my experience that these anti-imflammatories live in one's system and that the pain relief can continue for weeks after withdrawing from the drugs before the real experience of going without is felt.

CAUTION ON COX-2 INHIBITOR ANTI-IMFLAMMATORY DRUGS
A word on the meds thing: My doc said that while COX-2 inhibitor drugs were initially thought to be great gifts to those with arthritis, they may be associated with kidney and heart damage (do a Google search to learn more, using, for example, Vioxx AND cardiac). 

A couple things that have helped for me (and I have no affiliation with the company): Metagenics (http://www.metagenics.com/index.asp) Inflavonoid Intensive Care supplements and Ultra ImflamX ("Nutritional support for inflammations patented medical food"), also by Metagenics. I don't think it's possible for consumers to order products from them. There is a list of distributors on the site. It's necessary to get their stuff through a doctor, naturopath, chiropractor, etc.

-- Marilyn

 

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