Osteoporosis treatment alternatives

[WinterSong]

A family member of mine is fairly young (mid 50s) and was diagnosed with osteoporosis most likely cause by a lifetime of undiagnosed Celiac. The medication her doctors have her on only prevents further damage, it doesn't rebuild bone. Also, they will only let her be on it for 5 years because the meds will cause her bones to become extremely brittle and may eventually bread. This seems like a ridiculous medication. Has anyone found or seen any research on alternative treatments for osteoporosis specifically caused by Celiac?

 

thanks.

[cyclinglady]

I have osteoporosis.  I was diagnosed two months after my celiac disease diagnosis when I fractured two vertabrae doing nothing!  I researched and chose hormone replacement therapy for two years and excercised.    I also took some supplements the first year.  When I got dairy back, I stopped taking all supplements.  I am confident that I eat a great diet and do not need supplements.  My current blood work is fine too and does not reflect any deficiencies.

i had a two year follow-up bone scan.  Nothing changed, but nothing got worse.  My hip and rib pain that I had went away that first year.  I am happy!  

Exercise?  I do something everyday.   Long walks with my dog, running 2x week 3.5 miles, teach two exercise classes a week, swim, and ride my bike on the weekends (30 to 50 miles).

Other things can cause osteoporosis and those should be ruled out.  

[Ollie's Mom]

I would suggest looking into vitamin k2 (not vitamin k1). There's a book called "vitamin k2 and the calcium paradox" which explains the relationship between calcium, vitamin k2, vitamin d, and vitamin a when it comes to bone formation and maintenance. There have been clinical studies done in japan using vitamin k2 to treat osteoporosis. Calcium alone isn't enough. 

 

Edited to correct the name of the book. I was trying to go from memory!

[manasota]

I am not a doctor.  I was recently diagnosed with osteoporosis and heavily investigated all the medications indicated for that diagnosis.  I was not happy with any of them.  I have chosen to opt for lots of weight-bearing exercise, good diet and a product called Bone Solid by Country Life Vitamins.  It is Certified Gluten Free and covers calcium, vitamin D, vitamin K, & other stuff.  Unlike cyclinglady, I am pretty sure I don't absorb nutrients very well and felt I needed the additional supplementation.  However, this is an individual choice.  I have also seen data that warns about getting too much calcium.  Like everything else in life, proceed at your own risk.  Get as much info as you can, and make the best choice that you can for yourself.  I plan to retest in 2 years and re-evaluate my options at that time.  (I'm hoping for a miracle drug by then! ;-)

[plumbago]

Manasota,

I am curious to know more about your diagnosis. Were you diagnosed via a bone scan? Did you scrutinize and research your results? Have you thought about a second opinion?

As for the first questioner, I don't know the answer, and would need to do at least a couple of hours of research to understand more about osteoporosis caused by celiac disease. It's a great question.

[manasota]

Hi Plumbago, Yes I was diagnosed via bone scan.  Yes, I scrutinized and researched my results.  I don't see the value of a second opinion in this matter.

I had my first scan in 2000 after knee surgery.  At this time, my bones were superior to those of my age.  I had another scan in 2008 because they were looking for the cause of my bone pain.  Again, my results were very good.  In 2010, after my Celiac diagnosis, another scan revealed deterioration of my bones just to the border of osteopenia/osteoporosis.  Now, in 2015, the results are the same as 2010.  (Both of these times, it was labelled as osteoporosis.  The first time nobody was concerned or suggested treatment.  This last time, due to my pain showing its ugly head again, the doc did suggest treatment.  I emphasize, the test results were the same for the last 2 scans.  I researched all the meds and decided against bisphosphonates at this time.  I plan to focus on diet and exercise.  Also, I am on low dose, compounded HRT.  To me, the salient point is that my results were the same in 2010 and 2015.  I plan to retest in 2017.

As for Celiac and osteoporosis, some literature does suggest a cause other than simply not absorbing enough nutrients.  I haven't found this other mechanism to be well understood at this time.  

I have an appointment with a new gastroenterologist this week who completed a fellowship at the U. of Chicago Celiac Center.  I plan to ask a lot of questions.  If I get any useful info, I will surely post it.  ;-)

[WinterSong]

Thank you all for the posts!

 

manasota- how much is your low dose of HRT and which type of doctor perscribed the medication? I would love to know any extra info you find out

[manasota]

Yikes.  I certainly did not mean to imply that HRT, at any dose, is a treatment option for osteoporosis.  It is not.  I just happen to be one of the "lucky ones" whose menopausal symptoms are so severe that I require HRT just to live any kind of "normal" life.  I've seen other Celiacs on this site say the same thing.

I'm not sure what you mean by "how much" is your dose of HRT.  Are you referring to $$ (not cheap) or milligrams?  The milligram dose is very much smaller than that available in retail pharmacies.  My RX was written by my gynecologist.  
 

Correction:  HRT can be used to treat osteoporosis under certain limiting conditions; but it is not a first-line choice.

[cyclinglady]

Estrogen can be a treatment for osteoporosis.  See this link to the National Institute of Health regarding osteoporosis and treatment options:

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There are so many forms of HRT.  The correct dosage (which varies) should be determined by a medical doctor.  

HRT is one of many treatment options for osteoporosis.  Like any drug or therapy, there are risks involved.  Those should be discussed with a doctor to determine the best treatment for the the individual patient.   Any medical doctor can write a  prescription for HRT.  I assume that most are written by a primary care physician or a GYN.  

There are many reasons for someone to develop osteoporosis.  Finding the root cause of it, will probably help the patient to recover or manage the disease best.  But that last statement is just my opinion. 

[manasota]

I got my info from the Pharmacist's Letter website.  They quote an article from JAMA 2002; 288: 321-3 where it is stated that estrogen replacement therapy is not approved to treat postmenopausal osteoporosis, is not a first-line agent, and should only be used in women who can't tolerate other therapies and not at high risk of cardiovascular or thromboembolytic disease.

Yes, it can be used; but it is not recommended except under the above-mentioned conditions.

Pharmacists tend to go "by the book" and follow FDA recommendations.

My HRT is not prescribed to treat osteoporosis.

My earlier post should have stated that HRT is not a first-line treatment for osteoporosis.   My bad.

[cyclinglady]

48 minutes ago, manasota said:

I got my info from the Pharmacist's Letter website.  They quote an article from JAMA 2002; 288: 321-3 where it is stated that estrogen replacement therapy is not approved to treat postmenopausal osteoporosis, is not a first-line agent, and should only be used in women who can't tolerate other therapies and not at high risk of cardiovascular or thromboembolytic disease.

Yes, it can be used; but it is not recommended except under the above-mentioned conditions.

Pharmacists tend to go "by the book" and follow FDA recommendations.

My HRT is not prescribed to treat osteoporosis.

My earlier post should have stated that HRT is not a first-line treatment for osteoporosis.   My bad.

  I did not mean to offend you.  I just wanted people to know that there are many options for treating osteoporosis. All have risks and benefits and there are no clear-cut answers as to which treatment is best because we, as individuals, vary!  ?  

In my personal case, I had been on HRT long before my celiac disease diagnosis for perimenopausal issues.   It was easy to get back on.  When I fractured my T7 and T9 vertabrae, the paramedics and ER doctors thought I was having a heart attack.  I had the full cardio work up in the hospital and I am good to go for another 50 years, cancer does not run in my family (risk is still there, but it is low) and I react to many medications (anaphlatic) not to mention a damaged gut from celiac disease.  So, HRT, exercise and some supplements seemed best for me.  My doctors (several) agreed.  

After two years, I seem to be holding my own (no fractures ?).    I hope my next bone scan will be same or better than the first two!  

[WinterSong]

Thank you all for the comments. A note from my mom (the one who I am helping with research):

 

I was diagnosed with osteoporosis 4 years ago. I was told my only option was to take one of the pharmaceutical drugs. I tried for 6 months and realized I could not do it after much research. I have been gluten free for 5 years and worked even harder at my diet, exercised 5 days a week and took whole food supplements.  I just found out I have gotten much worse and my new doctors only option for me is pharmaceutical options again. I suffer from sever jaw pain already and fear I will be the small percentage that will suffer with that side effect. I have read several opinions that for someone like me HRT is an option. My general doctor is clueless in HRT as is my OBGYN.  That is why I was asking what kind of doctor will prescribe the HRT and an idea of the dosage.  I broke a rib and s foot with on one week and realize I must do something.  I thought the source of my osteoporosis was medication I was forced to take for my jaw but I stopped that medication 2 years ago and then saw the big drop in bone density.  I am 57 and think the cause is hormonal.  Or my life long struggle with a gluten intolerance.  I appreciate everyone's responses but I am in a serious situation and forced to educate my doctors.  I was just looking for info to bring with me and I am also looking for someone in my area who can help me.  

[manasota]

Cyclinglady, I am by no means offended.  I realize your intention is to be helpful--as is mine.  Mostly, I am exceedingly grateful for the opportunity to clarify my earlier posts.  You have been very kind and very helpful to me and to others.  I do my best to refrain from discussing medications as my wording defaults to that I used while discussing with other pharmacists or physicians--not always helpful here.  I panicked because I was afraid  WinterSong was going to misinterpret my words as recommending HRT for her mother.

WinterSong, I am so sorry your mother is having these problems.  However, I have no idea how to proceed with her care.  I think you'd be best-served by finding an understanding doc she can work with to choose her path forward.  In the end, the choice needs to be made by the doc and the patient together, hopefully.  Sorry I can't give you the answers you're looking for.  I hope you find them.

Here's hoping for better, stronger bones for us all!  (Also hoping for some research breakthroughs!)

P.S. Cyclinglady, please feel free to improve upon my posts anytime!  Together, we are stronger.

[cyclinglady]

WinterSong,

When your mother stated that she has been gluten free for five years, has she really been gluten free (cross contamination, not eating out frequently, etc)?  Some folks think that just avoiding gluten in foods is enough, but we all know better.  Getting glutened many times a year could cause malabsorption issues contributing to her osteoporosis despite her best efforts.  Please do not take offense if she is gluten-free diet compliant.  

Again, there are other issues (e.g. Medications, diseases, alcohol, poor nutrition, smoking, etc.) that can contribute to osteoporosis).  Doctors think it is a combination of many things.  For example, my risk factors include being small framed,  menopausal, running hyper thyroid at times, family history, and celiac disease.  I knew years ago that I was at risk.  I think the celiac disease just sped up my osteoporosis diagnosis.  

I would advise her to not eat hard things.  My grandmother fractured her jaw eating a cold piece of candy straight from the frig.  Yep, that's when they diagnosed her.  

I hope she finds a solution!  ?. I was devastated when I fractured my back doing nothing.  It was worse than my celiac disease diagnosis.  I thought my athletic days were over.  But I got well in a few months.  Will I receive another fracture?  Maybe, if I crash my bike or trip on the trail, but I am willing to take that risk.   I do not risk carrying heavy things.  I pull out the "I can break a bone card" at every opportunity! ?

[Gemini]

As a diagnosed Celiac who is post menopausal with osteoporosis in my spine, I can tell you that if you fall into my category, the vast majority of cases cannot be reversed.  Osteopenia is different...that is earlier stage and can be improved. But HRT will not do much at all, except improve the hot flash problem....and those will return when you stop using HRT, for awhile anyway. The goal is just to stop the progression of osteoporosis, as most doctors who know about this will tell you.

I will never take any meds for it because they can cause long bone fractures and problems with jaw necrosis if you have ever had dental implants done. I eat a good, bone friendly diet and do weight training in the gym, along with the right supplements of calcium, magnesium and Vit.D with K2 added. I do not worry about it anymore because all that stress will only make things worse. If you tone your body and build muscle as best you can, that goes a long way to support your bones. Some people might have miniscule improvement but osteoporosis is almost impossible to reverse in older, post menopausal women...especially with Celiac Disease. There is no magic bullet for this, unfortunately. I have stopped the progression of mine, which is huge apparently...or so the docs seem to think. I have also never broken any bones.

Just remember to do weight bearing exercises...those which shock the bone. Walking, running, and weight work.  Swimming and cycling do not build bone, although they are an excellent cardio exercise. Above all, do not obsess about this. You do the best you can and let it go. Just be wary of the meds because they can and do cause other problems that can be just as bad as osteo.

[WinterSong]

From my mom-

 

Gemini thank you for your response. I seem to be in a similar situation except I broke a rib while leaning a weight bench.  Even though I have been eating right And taking food based supplements I had a large loss of bone in my right hip.  I am trying to come up with a new plan that will stop my bone loss.  I am taking 200 k2, 1500 vitamin d and 1200 Calicum. Do you have a recommendation for any other kind of vitamins or brands? The doctors I have encountered here only want to bully me into prescription drugs and I don't feel comfortable with that. I am going to add 6 prunes to my diet to see if that will help and of course continue to exercise daily.  Thank you for your help 

[WinterSong]

And yes, she is very strictly gluten free

[Gemini]

I feel your pain!  It is very hard to deal with this because you do your best to improve your bones and then there isn't as much improvement as you want there to be.  I am 56 years old, went through early menopause at 45 and then was diagnosed with Celiac at 46.  I did bio-identical hormone replacement for about 4 years right after menopause because the hot flashes were so bad, I was freakin' miserable.  They helped with the flashes but did nothing for my bones.  I think you would have to take much larger doses to improve bone density with hormones BUT once you get past menopause, there is that damn cancer risk so I wasn't willing to use them for too long.

As for vitamin brands, I use a lot of Metagenics vitamins.  A few doctors I have seen who practice functional medicine and whose opinions I trust (yes, they are real MD's) have said that the MCHC ingredient is one of the best things to look for when picking out a calcium supplement. I like Metagenics...they are gluten free and these are also chewables. I think for those of us who have compromised absorption, it can't hurt to use a chewable as they are easier to absorb. Plus, I got sick and tired of swallowing horse pills. These are chocolate too....not bad tasting at all.    I also take 5,000 IU per day of Vitamin D because I live in the Northeast and don't get a lot of sun so I need all the help I can get. I take a more generic brand of those from my doc but am thinking of switching to Metagenics to see if I do better with that.  I also take K2 and buy those at my local health food store.  K2 is expensive so I tend to buy cheaper brands but they still have to be gluten free, of course. 

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Now, these vitamins are not cheap but they are not too outrageously expensive either. I have used Metagenics for a long time but was using a non-chewable type of calcium, which they also offer.  My last bone density was about 2-3 years ago and I had stopped the progression of osteo in my hip and spine, which my doc was thrilled with. I was pissed because I guess I thought that with all the stuff I was doing, it should have been better. That's when she pointed out that for someone my age who had gone YEARS without a diagnosis and suffered severe malabsorption, weighs in at 112 pounds and is post-menopausal, my expectations were too high and I should be happy that the disease process was stopped. OK....I get it now.  So....I switched my calcium to the chewable kind and upped my intake of all those green veggies that are good for bones.  I exercise twice a week in the gym with a trainer but cannot increase that amount until I retire. Maybe I need to exercise 3-4 times per week to actually gain a little bone but with all the time I spend on food prep and working a full time job, there is only so much time in a week.  I have not been in any hurry to repeat the bone density test because if I do too many of them and I still see no reversal in the right direction, only the stoppage of the destruction, it will depress me.  I don't know what else I could do to make things better. 

FYI...my primary care doc did not recommend that I go on bone meds. She said I was too young, the problem of long bone fractures from the meds are a real threat to a younger person taking those meds and they are also an irritant to the GI tract. Just what we Celiac's need, huh?  I also have had 3 dental implants, with more on the horizon.  Guess what?  You have to sign a waiver when you have an implant done because these are the people who run the biggest risk of jaw necrosis when on bone meds.  They can cause failure of the implant. My implant guy was happy I refused to take them as they see the results of what happens when women are goaded into taking them by their doctors. Listen to your intuition.  If that little voice is telling you no, listen. I also know that healing is a continual thing in us older folks. I have been gluten-free for 10 years and am VERY strict with my diet. Maybe it takes much longer for us to see results because of our age.

You may want to see a bone specialist to rule out everything else that can cause osteo because you can still stand your ground with them when it comes to meds. The halting of the progression of my osteo came only after I started doing weight training at the gym.  The work out is hard. I try and lift as heavy of a weight as I can manage for the particular exercise I am doing without doing harm to myself. For each exercise that you do with weights, you should get to the point where at the end of the set, you feel like you cannot do one more. Jello muscles, I call them! 

If you have any more questions, feel free to ask away!

 

 

 

 

[WinterSong]

From the mom:

 

Dear Gemini, thank you for your response. I have been to a bone specialist and he said I was loosing bone due to medication I was on.  2 years later with out the medication, following a strict diet, weight training and walking and taking supplements I lost more bone than with out the big push to stop the loss of bone.  I would be happy to just stop loosing bone but in search of the answer. I thank you for sharing your solutions with me.  I have been on plant based Calicum raw and organic but I will do tea search on HCHC.  Also I have read that it is important to get k2 from Natto instead of synthetic K2 because of absorption. I have also read you need 100grams of K2 for each 1000 vitamin D you take.  I don t know if this is true but I was directed to info in a book called vitamin k and the Calicum paradox.  I wish you much luck in preserving your bones and hope I find a solution over the next 2 years. 

[WinterSong]

From Mom (she doesn't have a computer at the moment, so thank you for being patient as I post for her):

 

Gemini, Do you take the  chewable  product as recommended.  It appears to only have 300mg of calcium per day? That seems to be to little for someone with osteoporosis? I also saw a product they sell that is extra strength but not chewable which has more calcium per serving ?

[Gemini]

On November 11, 2015 at 9:26:47 AM, WinterSong said:

From Mom (she doesn't have a computer at the moment, so thank you for being patient as I post for her):

 

Gemini, Do you take the  chewable  product as recommended.  It appears to only have 300mg of calcium per day? That seems to be to little for someone with osteoporosis? I also saw a product they sell that is extra strength but not chewable which has more calcium per serving ?

Yes, I do take the recommended amount stated on the bottle.  It has something to do with the MCHC compound in the supplement but I need to get a better explanation for it.  I also try to get the rest of what I need for calcium from my diet.  I think it would be OK to take a higher dose if you need to build bone aggressively but you could always talk to a customer service person at Metagenics or ask your doctor, if you had additional questions.  Or, if you are comfortable swallowing pills vs. chewing them, you could try the extra strength version.  Metagenics make great supplements so I think any one of them would be good.