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libushe13 02-24-2009 05:30 PM

Bone & Joint Pain

I am a 28-year old who has had bone and joint pain for the past year and a half. I was diagnosed with Celiac disease in May of '08 and several endocronologists have told me that my bone pain is due to a low Vitamin D level. Well, now the endos have lost interest in me since my PTH levels have leveled out and it's been a good six months since my Vitamin D levels have been in the normal range and if anything, my pain seems to be getting worse.

Ultram was controlling it partially during the day but it seems to be breaking through that now. Now I'm getting headaches on top of it which is a whole other issue. My primary doc doesn't really know what to with me and I'm at my wit's end.

Please tell me that somewhere out there has had a similar problem!! I'm too young to be in this much pain all the time!! By the way, I've tested negative to what seems like just about every other test around.


janewhite1 02-24-2009 08:19 PM

Re: Bone & Joint Pain
Where is your pain? What tends to make it better or worse? What tests have you had? Is there any visible swelling or bruising or anything? What type of headaches?

AuntieLeela 02-25-2009 01:21 AM

Re: Bone & Joint Pain
Maybe you should get a referral to a rheumatologist.

The malnutrition caused by celiac can cause early onset osteoarthritis or osteoporosis, or both. Have you had a DEXA scan?

It can take up to two years for the small intestine to heal itself after the start of a strict GF diet. While most people steadily improve the first year, it often takes 2 or 3 years for lingering health problems to resolve.

libushe13 02-25-2009 08:23 AM

Re: Bone & Joint Pain
The pain is mostly in my legs around my knees and ankles and sometimes in my elbows and hands. Heat will make it better temporarily and also Vicodin. :) I have had many different tests for arthritis, x-rays and blood tests for other diseases such as osteomyelitis. No, there is no visible swelling, bruising or redness. The headaches have been daily for the past couple of months. It is usually a dull pain that starts out on the top of my head and moves to the front and back, particularly behind my right eye and along the back of my neck. It basically just builds throughout the day.

nscrbug 02-25-2009 05:23 PM

Re: Bone & Joint Pain
Just a thought here, but could it possibly be fibromyalgia? With such widespread pain all over, it might be something to look into.

libushe13 02-25-2009 07:04 PM

Re: Bone & Joint Pain
Well, I did think of that but isn't that usually in your muscles? Also, my doctor has me on Lyrica which is used to treat fibromyalgia and that doesn't seem to be helping at all.

libushe13 02-25-2009 07:09 PM

Re: Bone & Joint Pain
And yes, AuntieLeela, I did get a DEXA and I'm osteopenic. I'm due for another one soon so I'm interested to see how another one turns out. Can you go a rheumatologist for joint pain if you don't have arthritis? I just think I've run the course of my primary care physician. I have heard what you said about the health issues sticking around for awhile too... I was just told by my endos that my pain was due to my Vitamin D levels and now that those are level I guess I just expected the pain to start getting better but it seems to be getting worse!

AuntieLeela 02-26-2009 02:19 AM

Re: Bone & Joint Pain
Rheumatologists treat osteoarthritis, osteopenia and osteoporosis.

I suspect your bone/joint pains are from the osteopenia. You've heard of "growing pains"? Whether you're losing bone or gaining bone, (which may be what's happening now that your D level is back to normal) you're going to have aches and pains, especially in the long bones of your arms and legs.

Since you have celiac you might want to watch for symptoms of autoimmune thyroid disease, since both hypothyroid and hyperthyroid are very common in celiacs. Hyperthyroid can sometimes "steal" calcium away from the bones, so if you don't improve in the coming months, it's something to consider.

(like celiac, thyroid diseases occasionally don't have noticeable symptoms till late in the illness)

libushe13 02-26-2009 07:17 AM

Re: Bone & Joint Pain
Thanks for the response, AuntieLeela. That makes a lot of sense!

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