Newly Diagnosed Osteopenia

[Karen B.]

I have heard of a treatment with silicone injections to replace the discs between the vertebrae but the last I heard, it was still considered very new and possibly still experimental. My doc has me on 2000 mg calcium and I learned awhile ago to not take calcium without magnesium. The kind I take also has D in it.

You might want to read this article. I know it's from 2005 but it repeats the same info I've heard recently about Celiacs and Fosamax. Also, make sure any dentist you are seeing knows that you are on Fosamax. IIRC, the risk for necrosis is increased after invasive dental work like pulling teeth or inserting implants.

Open Original Shared Link

Drug Therapy for Osteoporosis

6/13/2005

We get many questions about the management of osteoporosis, especially whether patients should be placed on agents that act on the bones as anti-resorption agents such as Fosamax. We have advocated that patients with reduced bone density, and celiac disease, be treated by the use of calcium supplements and a gluten-free diet. Only if the bone density does not improve, and calcium absorption normalizes, would we advocate use of these drugs. Bone density usually improves on this regime.

A patient sent us information that they received from the manufacturer of Fosamax, Merck & Co. We also checked with Merck. We received information concerning Fosamax (alendronate sodium) tablets and oral solution. Their information states that Fosamax is not indicated for the treatment of osteoporosis secondary to Chron's disease, inflammatory bowel disease, celiac disease or malabsorption syndromes.

Here is what we advise. Serum calcium (the calcium in the blood) is maintained carefully for heart and muscle function by absorption from the gut, and from resorption from the bones. In the setting of active celiac disease and poor absorption of calcium, due to malabsorption, the bones are providing the main source of the serum calcium. The addition of a medication blocking bone resorption can result in a fall in serum calcium. Therefore, we advise that osteoporosis, in patients with celiac disease, be initially treated with a gluten-free diet and adequate oral calcium. This should be for at least a year. Then a repeat of the bone mineral density can be performed. If necessary, Fosamax can be added if there is adequate calcium absorption. Calcium absorption is usually assessed by a 24 hour urinary calcium test.

We have seen many patients with both celiac disease and osteoporosis that are doing well on drugs that include Fosamax and similar drugs. However, caution should be used if they are administered early in the course of celiac disease.

This information should not replace information provided from your physician who has detailed knowledge of individual patient

[DingoGirl]

I have heard of a treatment with silicone injections to replace the discs between the vertebrae but the last I heard, it was still considered very new and possibly still experimental. My doc has me on 2000 mg calcium and I learned awhile ago to not take calcium without magnesium. The kind I take also has D in it.

You might want to read this article. I know it's from 2005 but it repeats the same info I've heard recently about Celiacs and Fosamax. Also, make sure any dentist you are seeing knows that you are on Fosamax. IIRC, the risk for necrosis is increased after invasive dental work like pulling teeth or inserting implants.

oh my gosh - - I am usually a fairly thorough researcher and didn't do ANY research about Fosamax...thank you so much for this article. I am going to discuss it with my GI.....but I am so grief-stricken about my back and the pain lately that I'm not really able to figure this whole issue out....but one thing I DO know is that I don't want necrosis of the jaw.......so I've taken only one pill - - should I switch to something else?

Actually - - I am not so sure my GI will know how to answer these questions......

Ursula....oh my God - - no hope for me? well then.......we need a miracle, don't we.....let's all pray for one. I will DIE if I can't have an active life.......

help....

[Ursa Major]

oh my gosh - - I am usually a fairly thorough researcher and didn't do ANY research about Fosamax...thank you so much for this article. I am going to discuss it with my GI.....but I am so grief-stricken about my back and the pain lately that I'm not really able to figure this whole issue out....but one thing I DO know is that I don't want necrosis of the jaw.......so I've taken only one pill - - should I switch to something else?

Actually - - I am not so sure my GI will know how to answer these questions......

Ursula....oh my God - - no hope for me? well then.......we need a miracle, don't we.....let's all pray for one. I will DIE if I can't have an active life.......

help....

Susan, I guess I am too blunt again......... one of my problems. I am sorry if I made you feel worse. But I will certainly pray for you. God can heal anybody, even if nothing else works. And who knows, maybe there is something new that will help you. Maybe those silicone injections? You could mention those to your doctor.

[Karen B.]

oh my gosh - - I am usually a fairly thorough researcher and didn't do ANY research about Fosamax...thank you so much for this article. I am going to discuss it with my GI.....but I am so grief-stricken about my back and the pain lately that I'm not really able to figure this whole issue out....but one thing I DO know is that I don't want necrosis of the jaw.......so I've taken only one pill - - should I switch to something else?

Actually - - I am not so sure my GI will know how to answer these questions......

Ursula....oh my God - - no hope for me? well then.......we need a miracle, don't we.....let's all pray for one. I will DIE if I can't have an active life.......

help....

The worst part about having health problems is that you are least able to do research at exactly the time you need it most. You were only diagnosed a year and a half ago and you just found out about this issue. The article doesn't say no hope -- it says Celiacs have had good results with oral calcium. To me, that says you have a healthier alternative than Fosamax.

Also, neither Fosamax or oral calcium will address the problem with the discs. That's a separate issue. But I'd definitely see a spinal bone specialist. You may want to ask a local Celiac group for the name of someone that understands the issues that face Celiacs.

I'd also research what is needed for maxium uptake of calcium in the diet. Something along the lines of what I found out about iron -- you absorb much more of it if you take the supplements with citrus juice. Many of our nutrients are synergistic in nature, they work better in combination with other foods. I don't know that calcium does but it would be worth checking out.

Also, turmeric and fish oil have helped my arthritis (anti-inflamatory actions). I nearly gave myself an ulcer with aspirin. You may want to try these to help the pain. My sis found that anti-inflamatories allowed her to take less pain drugs (she has neck problems).

[beaglemania]

NO ONE can beat me on this one, diagnosed with osteoperosis when i was 11

I'm pretty close!!! Diagnosed when I was 12!!!!

[little d]

I only brought this back because I finally had my bone desensity test done today, and I had remembered this thread and wanted to read more about osteopenia and perosis.

NO ONE can beat me on this one, diagnosed with osteoperosis when i was 11

WOW! I'm 36 I had to almost beg my Ortho doc to let me have a Scan done. It was pretty cool I thought that the test was on my hands and feet but it was cool the scan looked like a mini MRI machine. I am kinda hoping that they don't see anything because osteo anything is scary, but I do have problems with my hips and lower back, which started when I was 17. I was working at a hardware store and I was putting the little things up I was pushing a basket when all the sudden I could not walk, I could not put pressure on my right leg because I really, really hurt at the hip. It took me a good 5 - 10 minutes to be able to walk. I finally was able to stretch the leg at the hip and move around. I never told my mom or my supervisor about it maybe should have.

donna

[frec]

Hi--My doctor just called to tell me I have osteoporosis. I am 51 and I was diagnosed with celiac 5 years ago. I've already been on calcium/magnesium/vitamin D for over a year. I exercise regularly (though my bad back keeps me from more than walking and swimming). I can't eat dairy. To further complicated matters I just started menopause and was hoping to stay off hormones. I've had jaw surgery twice so I am not messing with Fosamax. Does anyone else have experience with bone loss and celiac and menopause?

[cruelshoes]

I know this is an older thread, and I apologize if this has been reccommended before. I used to take Open Original Shared Link, which is a nasal spray for osteoporosis that bypasses the gut entirely. It may be a good option for anyone who is newly diagnosed (or not!) and is still dealing with absorption issues.

Hope this helps someone.

[Gemini]

Miacalcin is for women past menopause that have osteopenia or osteoporosis, not younger women still in menses. After questioning my doctor about it, she told me that this medication is not very effective and it's the delivery system that's the problem.

I am 48, post-menopausal and Celiac. I was also diagnosed with osteopenia earlier this year but am not going to take the meds. I am sure the doctor will give me a hard time about it but after reading about how they work and the possible side effects, doesn't sound like a good deal to me. They interfere with the breakdown of old bone so the new bone growth is deposited on old bone....sort of like building on a crappy foundation. I won't even go into the jaw necrosis that could possibly happen.

The risk is probably small on that but if it happens, there is no fix for it. I guess I am getting fed up with doctor's telling me to take a bunch of meds once they find out you have celiac disease. I am not getting on that merry-go-round, only to find out the meds screw something else up down the road!

Bone building exercise and a good diet, along with mega supplements sounds much safer and makes more sense. As I've argued with her before, I am absorbing now so what's the problem?

[cruelshoes]

Miacalcin is for women past menopause that have osteopenia or osteoporosis, not younger women still in menses. After questioning my doctor about it, she told me that this medication is not very effective and it's the delivery system that's the problem.

I am 48, post-menopausal and Celiac. I was also diagnosed with osteopenia earlier this year but am not going to take the meds. I am sure the doctor will give me a hard time about it but after reading about how they work and the possible side effects, doesn't sound like a good deal to me. They interfere with the breakdown of old bone so the new bone growth is deposited on old bone....sort of like building on a crappy foundation. I won't even go into the jaw necrosis that could possibly happen.

The risk is probably small on that but if it happens, there is no fix for it. I guess I am getting fed up with doctor's telling me to take a bunch of meds once they find out you have celiac disease. I am not getting on that merry-go-round, only to find out the meds screw something else up down the road!

Bone building exercise and a good diet, along with mega supplements sounds much safer and makes more sense. As I've argued with her before, I am absorbing now so what's the problem?

I see your point, but aren't all the ostoporosis meds intended for post-menopausal women? I don't know of any of them (fosamax, actonel, evista, miacalcin) that target a differnet demographic. I am interested in what your doctor said about the delivery system of the miacalcin. Can you tell me more?

I should also mention that I do not take any meds for osteoporosis any more. Once I got my celiac disease diagnosis, I didn't need them anymore. Imagine that!

[Nevadan]

Miacalcin is for women past menopause that have osteopenia or osteoporosis, not younger women still in menses. After questioning my doctor about it, she told me that this medication is not very effective and it's the delivery system that's the problem.

Here's another view of Miacalcin. I'm a 62 yr old male dx'ed w/ osteoporosis when I was 55. For the first year my dr prescribed Miacalcin and I had outstanding results - 5% improvement in the spine in 12 months! (3% with Fosamax is considered good.) Then along came Fosamax and he was convinced by the Pharma salesman that Fosamax was a better deal, so I was switched. For the next 4 years I had hardly any improvement in bone density. Plus I subsequently learned that Fosamax is incorporated into your bones for life, so if any of the "rare" side effects such as jaw bone death (osteonecrosis) becomes a problem, you are stuck. There is no antidote.

I stopped taking Fosamax 2 yrs ago partially because I was planning some dental work but mainly because I was not comfortable with the risk (Vioxx comes to mind).

Recently I had my regular DEXA bone density scan and my results had declined. So I asked my (different)dr to prescribe Miacalcin again, and I got the same story about it not being very effective, etc. It sounded like a sales pitch for Fosamax; however, since I had a previous history of good results with Miacalcin I did some research on Pubmed and lo and behold there are lots of published papers on good results with calcitonin treatment(Miacalcin). I gave my dr a stack of these papers and I think have her convinced to rx Miacalcin. From one of her comments it sounds like she may be under significant constraint against rx'ing Miacalcin; my guess due to Pharma influence. I think the manufacturer of Miacalcin just doesn't have as good of marketing as the Fosamax folks.

For the record, Miacalcin (calcitonin) is a natural hormone with no known major side effects (minor side effects include drippy nose [it's a nose spray] and has performed favorably in many studies, particularly on the spine. Fosamax has several significant side effects (gastro problems, jaw bone death) and is with you for life.