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My oxalate story....
In 1995, I was dx with interstitial cystitis after suffering with uti's and bladder sensitivity for quite a while. The urologist offered little help except for a rx for elavil. Quite coincidentally, I met a woman who also had IC, and since it was a little known thing at that time, had a nice discussion comparing pain, treatment, etc. She had a paper - do not remember the origin - that discussed how dietary oxalate could compound pain. Since it outlined a basic diet and there was no internet access available to me at that time, I started eliminating certain foods for two weeks and then adding them back to judge pain levels. I was startled, because pain was being caused by everything we like in the south: sweet potatoes, turnip greens, spinach, okra, beets, wheat bran, etc. All these things are supposed to make you healthy, right?
My beautiful 19 year old daughter had died very suddenly just two years previous, and my body had taken a full jolt with the sudden-ness of it and the grieving and I was thinking that I could build health by eating all the above.
I asked my urologist why he didn't tell me there was a diet that could relieve some of the pain, and he said, 'Most people cannot stick to it.' (Shouldn't that have been MY decision?)
Next dx was fibromyalgia and there were some complicated years of muscle/bone pain, stomach problems, allergies, etc. until I finally put myself on a GF diet and gleaned some important information from this celiac listserve since we had gotten a computer and could access the web. Not until I was able to have internet access did I learn about celiac disease and was finally, after many rounds with various doctors, dx with celiac in Feb. of '04 (through blood testing) and managed to re-gain some weight. But instead of becoming remarkably better, I react to and have had to eliminate more and more foods.
I am now not only gluten free, but also soy free, dairy free, and only occasionally eat egg, corn and sugar. I used to be able to tolerate a certain level of oxalate, but some of my previously tolerated foods now cause problems. My first signs of oxalate pain were in my left calf. My legs hurt terribly - as well as everything from waist down. If I had not found the info about eliminating oxalate, I really feel I would be in a wheelchair by now. I also have found relief of muscle/bone pain and a lower jaw pain that can be excruciating. Oxalate pain has no reliable pattern. It seems to hit any weak area. I feel that most of my problems are based with oxalate, but do not know the science behind it, nor have I found any doctor that is knowledgeable.
My best source of information has been a yahoo group - Trying_low_oxalates. This is a board primarily for parents of autistic children, who suffer from similar gut issues and of whom many are GFCF and low oxalate. There are a few adult members. It's a bit much to read through all their trials, so the founder of the group, Susan Owens, and those who are primary with the group have established an information web site with lots of good material about trying the LOD. You can access this at: http://lowoxalate.info/index.html
I'm sorry I can't report any answers or any tremendous 'cure.' I just know that oxalate is a problem for my metabolism and I really don't know if oxalate is responsible for the gluten intolerance, or the other way around. I've added some supplements to my regimen using the above web sites as a guide but have to move slowly and carefully. Many herbal preps are high in oxalate. Even skin lotions with herbals in them will cause a sore that is usually round - kind of like a cigarette burn and takes a long time to heal. It does not itch. This used to drive me crazy until I finally traced it to oxalate - either dietary or in skin creams.
This touchy body of mine is still touchy but I am soooo much better than 10 years ago, so I can only hope improvement will continue. I've certainly learned that gluten and oxalate are NOT my friends!
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I have tried taking calcium. I was just diagnosed this year and am still struggling with joint pain and swelling (presumable from celiacs since all my tests are negative). When I remember and take calcium with each meal I definitely feel better. My diet is still in the works, so changing the few foods my body can tolerate is not in the cards right now. But have definitely seen improvement with calcium citrate three times a day.
[... taking calcium citrate w/ meal blocks the absorption of iron. So don't take it with all three meals. I don't take it for breakfast when I take my multivitamin w/ iron. On top of everything else that wrong w/ me I sure don't need iron deficiency anemia.]
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