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I had an appt. today for a re-check with the endocrinologist. I was referred to an endocrinologist several months ago by the orthopedic I went to for back and joint pain. He did bone density scan and checked several things by blood test. In addition to my back problems, he said I had osteoporosis and a severe vitamin d deficiency. My vitamin d level was 8.2. During my first visit with the endocrinologist, he put me on 50,0000 iu of vitamin d 2x weekly for six weeks. This was all before I was diagnosed with celiac.

In the meantime, I have now been diagnosed with celiac disease. I recently had the blood work done for my revisit with the endocrinologist. My vitamin d had increased some but he said it was still what he considered a little low. He put me back on 50,000 iu of vitamin d but this time it is only 1x weekly for 6 weeks. He also prescribed Actonel for me to begin taking.

My ionized calcium level was just a bit high but he thought it was a mistake because the PTH levels were normal and the other calcium levels were normal. However, he is checking it again in 4 months. Has anyone had this problem?

Also, I discussed with him the fatigue and bone pain I experienced before diagnosis with celiac disease and still experience periodically. He said that could be some form of iron deficiency. I asked about Vitamin B levels and he said that could also be a reason. He did not order Vitamin B though and he said that my PCP could order those. Also, my RDW level was a little bit low but the RBC was normal. He did give me some samples of a prescription called Metanx, which he said is for Vitamin B levels. Has anyone taken this or does anyone know anything about it?

He was very honest and said that he didn't know that much about celiac disease. So, he is basically is only treating me for the osteoporosis and vitamin d problem.

My question is also this....should I have my Vitamin B levels checked.? Also, should I see a rheumologist? Some people have suggested that I see a rheumotologist. I am not quite sure what exactly they would do or if they could help with anything to do with celiac disease.

It has been about 3 1/2 weeks ago that I was diagnosed.

I appreciate the responses and assistance for all the guidance this board provides. Thanking you in advance!

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You need to do some serious research on celiac and osteoporosis. Celiac is the leading cause of osteo - & most doctors know that. There is some controversy about taking drugs for osteo in the first year or so gluten free... you might need a new doctor because if this one is treating your osteo & knows nothing about celiac - he is just stabbing in the dark while writing a prescription - pretty dangerous combination, I think.

you should definitely take a B12 everyday.

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I had an appt. today for a re-check with the endocrinologist. I was referred to an endocrinologist several months ago by the orthopedic I went to for back and joint pain. He did bone density scan and checked several things by blood test. In addition to my back problems, he said I had osteoporosis and a severe vitamin d deficiency. My vitamin d level was 8.2. During my first visit with the endocrinologist, he put me on 50,0000 iu of vitamin d 2x weekly for six weeks. This was all before I was diagnosed with celiac.

In the meantime, I have now been diagnosed with celiac disease. I recently had the blood work done for my revisit with the endocrinologist. My vitamin d had increased some but he said it was still what he considered a little low. He put me back on 50,000 iu of vitamin d but this time it is only 1x weekly for 6 weeks. He also prescribed Actonel for me to begin taking.

My ionized calcium level was just a bit high but he thought it was a mistake because the PTH levels were normal and the other calcium levels were normal. However, he is checking it again in 4 months. Has anyone had this problem?

Also, I discussed with him the fatigue and bone pain I experienced before diagnosis with celiac disease and still experience periodically. He said that could be some form of iron deficiency. I asked about Vitamin B levels and he said that could also be a reason. He did not order Vitamin B though and he said that my PCP could order those. Also, my RDW level was a little bit low but the RBC was normal. He did give me some samples of a prescription called Metanx, which he said is for Vitamin B levels. Has anyone taken this or does anyone know anything about it?

He was very honest and said that he didn't know that much about celiac disease. So, he is basically is only treating me for the osteoporosis and vitamin d problem.

My question is also this....should I have my Vitamin B levels checked.? Also, should I see a rheumologist? Some people have suggested that I see a rheumotologist. I am not quite sure what exactly they would do or if they could help with anything to do with celiac disease.

It has been about 3 1/2 weeks ago that I was diagnosed.

I appreciate the responses and assistance for all the guidance this board provides. Thanking you in advance!

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Once I became gluten free & got up to speed on my Vitamin D my joint & muscle aches went away; it was amazing; I thought I would just have to live my life with them! I agree you need to find a Dr. who is knowledgeable about Celiac; that and keep inquiring here & on the web. There's no better advice than from people who have gone thru what you are. You're starting to read alot more about the reasons not to take Actonel, etc. For me & alot of celiacs you are also lactose intolerant; all of the pills for osteoporosis contain lactose. The other concern is that they stop the old bone tissue from leaving your bones but also prevent new bone from growing. I think the most important thing is making sure you're getting enough of all of the essential vitamins and exercising religously. Most celiacs are deficient in certain vitamins & minerals; I think that is the key along with weight bearing exercise. There is a really good website called Woman to Woman; even if you're a man the article on osteoporosis talks about this issue in more detail. Good luck; you're almost there!

Dee

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