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Hello to Everyone,

I am a retired primary care physician (general practitioner, 25 years).

I admit that I am almost completely ignorant of celiac disease, and recognize that you people are the true experts. I have been fighting a mysterious pain syndrome for over 8 years. It started out mostly with pain in my forearms. It is deep agonizing bone pain. The muscles do not seem to be involved. Now the pain is concentrated in my forearms and lower legs, ankles and feet. I sometimes have numbness and tingling in my feet, but mostly it is just intense, mostly dull and achy bones. It does not affect my back, neck, or hands. I do not have any other specific symptoms, or GI difficulties, other than occasional sour stomach or hearburn.

The pain can come and go without warning and without any particular cause. Sometimes it is unilateral, and sometimes it is in both arms or legs. It can concentrate in one area for hours at a time. Nothing helps, not even heavy doses of otc pain meds. Opiates do help with the pain for short intervals, but never completely, not even with very high doses of such meds as oxycodone. Of course opiates are a dead-end road, so I rarely use them. I can have better days sometimes, but I am never pain-free. After all these years, any of the classic known causes, such as Multiple Myeloma, osteosarcoma, etc. would have fully manifested and killed me by now.

I just started looking into celiac disease as a ddx, and am waiting for blood test results. I have one question: DOES ANYONE WHO HAS BEEN DIAGNOSED WITH CELIAC DISEASE HAVE SIMILAR SYMPTOMS? Any input would be greatly appreciated!

Respectfully,

Doc Holiday

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I've had similar symptoms; however, I was born with Ricketts (my mother had undiagnosed celiac, which we believe was triggered by an appendectomy when she was five months' pregnant with me), so bone pain is not a stranger to me. That said, since going gluten free, my bone pain has resolved. For me, especially after I drank beer, I would experience excruciating pain in my tibial bones and ankles. Sometimes the pain occurred without having had beer, but it was always triggered when I did have one--needless to say, I usually drank only wine. I've also suffered from tingling and numbness in my feet since I was very young, especially the toes. That only partly improved upon going gluten free. Have you had your Vitamin D and calcium levels checked? If you haven't already, you might consider doing some research on symptoms caused by nutritional deficiencies. I recently suffered greatly from foot pain, and after seeing doctors and an orthopedist, I gave up and did my own research. It turned out that I was low in zinc, manganese, and silicon, and my pain and disability disappeared after taking the chelated forms of these minerals.

As for pain relief, have you tried Curamin? It's my understanding that turmeric (which is the main ingredient in Curamin) is now recognized by the mainstream medical profession to be a powerful pain-reliever. Curamin has helped relieve my mother's hip and back pain, and I've also taken it for an occasional pain that appeared to be too difficult for OTC and prescription meds to take care of. It has given some people their lives back and is worth trying. You can usually find it at a health food store.

By the way, pain in one's limbs can be caused by a niacin deficiency. Check out this list of symptoms of nutritional deficiencies/toxicities:

http://www.behealthyatwork.com/pdf/Deficiency-Toxicity.pdf

Good luck in your quest to find answers....and I think you may very well have celiac.

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It always brings tears to my eyes when I read someone else's story about having bone crushing pain. My toes were numb for years--I got tested for diabetes etc, nothing showed up. Then last year, I starting having that bone crushing pain up my spine. I just remember being in the hospital and screaming for a morphine shot, you just never forget those moments. Yes, my symptoms resolved when I went gluten free. My tendonitis is just now clearing up, and my toes are still semi-numb (but there is more feeling in them then there used to be). But, I've only been gluten-free since March.

It helped me a lot to read some medical journals on ataxia, it was comforting to me, and it addressed some of my concerns about numbness and tingling sensations etc. Also to be aware that you might be intolerant of other foods, not just gluten--like casein or corn or soy.

The diet is not easy, but every time I see a doughnut or something made with wheat that I miss eating, I just picture myself in the hospital getting a morphine shot in the butt. It's very motivating to stick with it!

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I have deep pain in my left hip and joints when gluten sneaks in (amongst about a zillion other lovely symptoms...) It does seem that there is a cornucopia of symptoms and multiple system involvement with this surly disease!

Hope you get an answer soon, Doctor! And feel better!

lisa

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My bones ached terribly for 7 years. The long bones mostly...arms and legs...sometimes ribs. I kept getting migraine headaches and bone pain. They misdiagnosed with me with Fibromyalgia and told me it doesn't get any better. I believed that for years until I found this site. My bones ached to the bone and I'm not kidding. I would clutch my arms to myself...it was not joint pain. At one point my hip bones ached so bad inside...it was as if the very bone marrow hurt. They told me to take Ibuprofen every 4 hours and it helped very little. I took it for years. I walked hunched over due to pain in my legs and hips...it wasn't arthritis either. I went gluten free a year ago...and there is no more bone pain at all. I don't know if it was due to vitamin deficiency and malabsorption of everything, or if the bones hurt because your body steals calcium from the bones when it can't get it from your food.

No more gluten, no more NSAIDS, and no more bone pain. It took a couple of months but this was actually one of my first symptoms to get better. Even if you don't test positive, you should give the gluten free diet a try because gluten intolerance is a possibility as well. Good luck to you Doc.

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