Osteoporosis

[Jen H]

Hi,

I had a bone density test recently and found out I have osteoporsis. I know that people with celiac have malabsorption issues and I was wondering if that makes us more prone to getting osteoporosis? Also, if you have osteoporosis, I was wondering what treatment you follow (medication, exercise, vitamins). Is anyone on Fosamax?

Thanks,

Jen H.

[MACE]

I AM ON FOSAMAX AND HAVE BEEN FOR SOMETIME NOW. I FOUND OUT I HAD OSTEOPOROSIS LONG BEFORE FINDING OUT ABOUT THE CELIAC. FROM WHAT I HAVE BEEN READING CELIAC CAN LEAD TO OSTEOPOROSIS. I ALSO TRY TO EXCERISE BUT HOW FOR ME DUE TO OTHER HEALTH PROBLEMS I HAVE. I TAKE THE ONCE A WEEK FOSAMAX. THERE ARE OTHERS NOW ALSO ONE THAT YOU ONLY TAKE ONCE A MONTH BUT I UNDERSTAND THE SIDE EFFECTS FROM THAT ONE ARE WORSE. GOOD LUCK

[minibabe]

I was just recently tested for that also. My test came back negative, but before I had the test done my doctor and I were considering options just in case I did have it. And since we have celiac diease and we have problems absorbing things, then by taking an ingested pill that has to pass through the small intestine kind of defeates the purpose. We were considering some sort of calcium injection. Becasue if you are to have a reaction say a day before you take the medication, then I would think that it would be safe to say that you would not absorbe the medication. I also have a book that I just recently just read called "Fit for Life" (wonderful book). My aunt it currently borrowing it but I am going to go and get it back from here so that I can put one of the excerpts in it for you that has something about osteoporosis that you might find interesting.

Good luck

Amanda NY

[VydorScope]

Ye,s we are more prone to it, I was jsut tested for it a week or so ago, came back negative. Its one of hte many side effect of not getting all the nutrients out of the food. THe good news is onceyou gluten-free and aboarbing normally again you can dramaticly improve your chances of not getting it.

[JoeB]

We're definitely susceptible. I found out when I was diagnosed with celiac disease 9 months ago that I have osteoporosis, too. Since then, I've been taking multivitamins as well as calcium supplements along with Fosamax. If you're taking calcium, be sure that you take vitamin D, too, since it helps calcium get absorbed.

While I'm at it, I want to complain about the sexist advertisements for Fosomax. Don't they realize that some of manly celiac men need to take it, too?

[MACE]

I UNDERSSTAND WHAT YOU ARE SAYING. MY HUSBAND HAS OSTEOPOROSIS AND TAKES IT. HE DOES NOT HAVE CELIAC.

[Guest Rad]

Had a stress fracture Sept. 2005. Got sick (flu-like symptoms in Oct. 2005) and was too ill to take bone density test. Was diagnosed w/ Celiac Disease Nov. 2005. After starting gluten-free diet felt good enough to finally take the bone density test, only to find out I have severe osteoporsis from malabsorption. Am on Fosamax and calcium w/ vitamin D.

Seems like I've heard how Diet sodas robbing the body of calcium -- definitely a vice for me in years past.

Has anyone else heard of this?

Dianna

[VydorScope]

Had a stress fracture Sept. 2005. Got sick (flu-like symptoms in Oct. 2005) and was too ill to take bone density test. Was diagnosed w/ Celiac Disease Nov. 2005. After starting gluten-free diet felt good enough to finally take the bone density test, only to find out I have severe osteoporsis from malabsorption. Am on Fosamax and calcium w/ vitamin D.

Seems like I've heard how Diet sodas robbing the body of calcium -- definitely a vice for me in years past.

Has anyone else heard of this?

Dianna

As I recall if you are lowon vit d this can happen becasue teh soda has alot of phospahatus or somthig like that in it, and that needs ot be in balnce with vit d and calcium, and if you have to much phosphate your body needs to sumpliment its calcium supply by hitting up your bone stores. Sorry the details are vague right now....

[tarnalberry]

Yep. Some studies show that, in celiacs, not only in calcium absorption a problem, but so is magnesium absorption. Their results showed it was more important to supplement magnesium than calcium in celiacs with lower-than-normal bone density. Don't forget weight bearing exercise as well, along with the Ca, Mg, and Vit. D.

[Jen H]

Thank you guys for replying. Once you have osteoporosis, do you always have it? I know that medication and exercise can help, but does it ever go away?

I just started taking Fosamax with Vitamin D. I take it once a week. The package says the pill contains enough vitamin D for the week. Mace, you mentioned side effects. I have been nauseous and headachy today. Is that normal?

Jen H

[MACE]

YES THAT DOES HAPPEN FOR SOME. ALSO DIGESTION PROBLEMS, SHOULD TAKE AT LEAST 30 MINUTES FOR EATING DRINK FULL GLASS OF WATER. DO NOT LAY DOWN AFTER TAKING FOR AT LEAST 30 MINUTES. SOME IT BOTHERS MORE THAN OTHERS. LOOK UP SIDE EFFECTS FOR IT AND IF YOU ARE HAVING ALOT OF THEM OR BOTHERING YOU REALLY BAD TALK WITH YOUR DOCTOR. ARE YOU TAKING ONCE A DAY OR ONCE A WEEK. I TAKE ONCE A WEEK. I FIND IT BOTHERS ME THE FIRST DAY I TAKE IT MORE THAN IT DOES THE REST OF THE WEEK.

[VydorScope]

Thank you guys for replying. Once you have osteoporosis, do you always have it? I know that medication and exercise can help, but does it ever go away?

I just started taking Fosamax with Vitamin D. I take it once a week. The package says the pill contains enough vitamin D for the week. Mace, you mentioned side effects. I have been nauseous and headachy today. Is that normal?

Jen H

Well depends on your age,I was told some time around 30-35 you loose the abitly to reverse damage, and can only STOP/SLOW damage at that point. I have heard cases of ppl older then that reversing, but as I understand that is the execption not the rule.

[Nevadan]

While I'm at it, I want to complain about the sexist advertisements for Fosomax. Don't they realize that some of manly celiac men need to take it, too?

YES! I was dx'ed with osteoporosis at 55 yrs old after my older brother was dx'ed. It turns out that 20% of the people with osteo are male. I suspect if more males were tested the % might increase. I have taken Fosamax without any apparent side-effects; however, just remember that Fosamax is a relatively new drug, so who knows what will surface. One concern I have is that I've been told that Fosamax is incorporated into the bones - forever; therefore, if something negative does surface you're stuck with it. My opinion is that taking Fosamax should not be entered into casually. Depending on your age, if you have celiac disease you might want to wait a yr or so to see if the osteo improves just with the gluten-free diet and w/o drugs.

Also having done a lot of research on osteo, I agree with tarnalberry re the importance of magnesium. It seems that getting sufficient calcium, vitamin D, and magnesium are very important.

George

[Jen H]

Thanks for writing, George. I read the leafltet about Fosamax and I guess my biggest concern is that it seems to have some nasty side effects, some of which seem pretty harmful. I took it for the first time yesterday and woke up this morning with some mild chest pain, bone and body aches. Is that normal? I'm 28 and am not sure I want to take the stuff for life.

Tarnalberry, thanks for the advice on Vitamin D, Magnesium, and Calcium. I'm all stocked up on it.

[MACE]

My husband takes it and he has said that he thinks his bones hurt more since on it. As for me I seem to be bothered mostly the day and day after i take it. I seem to burp more then.

[Nevadan]

Jen,

I have taken Fosamax for 4 yrs. The only side-effect I ever noticed was a slight quesy stomach for about 3 hrs after taking the once/wk dose; that only occurred during the first few months of taking the med. During the 4 yrs my bone density essentially remained constant; of course I have no idea what it would have done without the Fosamax. I decided recently to stop taking F for a yr and then get my bone density retested. Based on the results, I'll decide whether to resume. Meanwhile I'll continue gluten-free and take calcium, vit D, magnesium supplements along with load bearing exercise. BTW, I most likely don't have celiac disease (don't have the genes), but I am definitely gluten sensitive.

One example of possible risks (I don't know how significant this is) is osteonecrosis recently acknowledged by the FDA and now required as a warning on the drug label:

Open Original Shared Link

If I were 28 with a recent celiac disease dx, I would do the gluten-free diet with supplements for a year and then retest the bone density. If it does not improve, then I would consider taking drugs. This is just my personal opinion.

George

[Jen H]

Thanks, George. I like that idea. I have been in bed most of the day with body/bone aches. I feel like I've been run over by a Mack truck. I'll try to speak with the doctor tomorrow. Can osteoporosis be prevented/reversed with diet, vitamins, and exercise alone?

Jen H