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chgomom

Osteoporosis

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Hello,

I just wanted to post this site....and just say I was just diagnosed with osteoporsis as a result of the celiac disease at 28yo. I'm sure most people know about it already, but you never know.

If anyone has personal experience with it, post those here. I could really use the personal expereiences, and someone else might be able to benefit as well.

http://www.emedicinehealth.com/osteoporosis/article_em.htm

Now, what I did'nt find out yesterday was.....why do I wake up at night with these dull aches...I always thought, sleeping wrong....and apparently that happens to about 5% of people with osteo.

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I was diagnosed with osteopenia about a year and a half ago after having a bone scan. The doctor spent a lot of time with me and said that I was the youngest person she had ever seen with "65 yr old" bones. I was 45 at the time. She said it was definitely due to the malabsorption from celiac. I'm on calcium and Fosamax. I have had several broken bones over the years. :rolleyes:

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I've been putting off having my bone scan done. :unsure: I'm worried about the results. I've had juvenile rheumatoid arthritis since infancy, it causes all sorts of bone growth abnormalities. I once had a doctor look at an xray of my spine and gasp. He said I had the spine of an elderly woman - I was 23. (I shoulda whacked 'em with my cane. :lol: ) I can't put it off much longer. My next appt to see my Rheumatologist is in November and I know he wants that test done. -_-

I'm very achy at night too. I've always just assumed it was the RA.

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Guest marshlakemom
Hello,

I just wanted to post this site....and just say I was just diagnosed with osteoporsis as a result of the celiac disease at 28yo. I'm sure most people know about it already, but you never know.

If anyone has personal experience with it, post those here. I could really use the personal expereiences, and someone else might be able to benefit as well.

http://www.emedicinehealth.com/osteoporosis/article_em.htm

Now, what I did'nt find out yesterday was.....why do I wake up at night with these dull aches...I always thought, sleeping wrong....and apparently that happens to about 5% of people with osteo.

Hi

I was diagnosed with osteopenia about 4 years ago, I was 52. My bone density at that time sat at -1.99, not good. My doctor put me on Foxomax, and yesterday at my visit told me she is sending me for another bone density to see where I am at now. Apparently there is concern in the medical community over the administration of Foxomax now for Osteo. as it is causing calcium buildup in the jaw causing all kinds of problems.

I would be interested in hearing from all of you who have had bone density tests done and what your score was.

I still have a leg cramps, bone pain at night...I think it is just contributed to the malabsorption of our nutrients no matter how long we have been gluten free. JMHO

Here is an interesting website for bone density scores, they also have a calculator where you can key in your age, and bone density score to give you more information.

http://courses.washington.edu/bonephys/opbmd.html

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Guest Nicky F.

Hello Everyone,

I was just diagnosed with celiac disease Sept. 12th. I am 65 and have had osteoporsis for about 12 years if not longer. I had my bone density test in July and I remember the doctor had told me it was a - 4 but I never saw the lab work. It has been the same numbers for the last 4 years. It was my doctor's idea to have a blood test for gluten. I was 47 when I had my first fracture and I have had many. I have osteoarthritis and my bones are very achy especially during the night.

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Osteoporosis I was 33 when doctors did a bone density. I was equal to a 74 and 77 year old in the measurements. I grew up with broken bones ...A LOT. I lost all my upper teeth by age 19! That is a lot of malosorption

Learn- Fosamax Is a miracle drug! (There are other medications now). My bones are 20%+ stronger. THAT is a huge number. My bones are now all normal except the low back that takes a bit longer rebuilding!

Pain. I grew up with terrible joint, bone and muscle pain caused by the osteoporosis and Lupus. Both associated with Celiac. Both not expected in men so I was 33 before a diagnosis. Lupus numbers dropped with the correction of the Osteoporosis. (Lupus is affected by physical and emotional stresses.)

I write to emphasis the importance of Fosamax. It may be a nuance to take first thing in the morning. Just, do it for your self.

My personal dream today is to play a game of baseball. I never did! I’m 50 this year. I spent growing up in pain and very ill. I then spent 10 years using a electric wheelchair! Today I can run a track … which is good for someone 50 also.

This is all due to Fosamax.

Celiac led to Osteoporosis and high Lupus numbers. Fosamax IS a miracle pill that is winning both. :D

Dee

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Hi to All: I've had a bit of a different take, coming in from the other side of Osteo. I was diagnosed with hypothyroid back in my twenties, and I'm 59 yo now. Always had stomach problems (had my gall bladder out at age 25), but I really learned to live with them, because my exhaustion was uppermost in my mind. I still don't have a confirmed diagnosis of Celiac, but I've improved a great deal on the diet (three months, going on four now).

However...I've had consistent high calcium testing for a number of years, and a year and a half ago they check my parathyroid hormone and it was out of sight. I had a parathyroid ademona removed in April of 2005. Had one terrible year, I can tell you, trying to recover from the surgery. Now they tell me that I have a profound Vitamin D deficiency and...another adenoma. I'm going with the secondary hyperparathyroidism at this point (due to vitamin D deficiency). And yes, I have osteo. My mother is currently in a nursing home because her kyphosis (that's dowager's hump to the uninitiated) has narrowed her throat to the point where she can't swallow without aspirating her saliva. My Mom, Grandmother and Great Grandmother all had this extreme kyphosis.

Kyphois is due to bone loss (osteo). Bone loss is due to disruption in calcium metabolism. Calcium metabolism is controlled by the feedback system of the parathyroids; when you don't have enough calcium in the bloodstream, the parathyroids will become overactive to the point where the demand for calcium is so great that the body will give up the calcium in your bones to maintain the calcium in your bloodstream. If you aren't getting enough vitamin D, your body cannot process the calcium you ingest.

My cousin is a confirmed Celiac.

Now, hyperparathyroidism can cause extreme exhaustion and a lot of other symptoms that can mimic a whole bunch of diseases. So I thought I was home and free. NOT. A year later and I'm back in the same place again.

I could write chapter and verse about hypo and hyperparathyroidism. It's not a place you want to go, and believe me, you want to look at every other possible diagnosis before you opt for surgery. I didn't and I've wasted yet another year of my life imprisoned in my bed, yorking over a basin.

And I still have osteo.

Best,

Laurie

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I write to emphasis the importance of Fosamax. It may be a nuance to take first thing in the morning. Just, do it for your self.

I hate to say this but please do some research. It is well documented that Fosamax causes jaw abnormalities.

'Since 2001, more than 2,400 patients have reported bone death in their jaws after taking a medication to prevent or treat bone loss. Most of these patients were taking potent, intravenously delivered forms of the drugs.

Additionally, 120 people who were taking the drugs in pill form have suffered from such debilitating pain that they have become bedridden or in need of walkers, crutches or wheelchairs.

Since about 90% of drug side effects are never reported to the FDA, the total number of people suffering from these types of side effects may be much higher. '

http://www.bagoliefriedman.com/fosamax.shtml.

'Admittedly, Fosamax won't be another Vioxx because Vioxx as a pain killer, was prescribed far more often than Fosamax. But make no mistake, tens of thousands of patients have already been injured over the past decade and the number of lawsuits will be substantial. Experts predict that up to 10% of people who received bisphosphonates may be effected by ONJ.'

http://www.scoop.co.nz/stories/HL0606/S00233.htm

Laurie, You have been taking Synthroid for Hypo. Do you realise that Armour taken sublingually strengthens bones and can reverse osteoporous ? Armour contains T1,T2,T3, and T4 and also Calcitonin.

Synthroid contains synthetic T4 only.

www.armourthyroid.com

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Hi, and Thanks for the Information: Actually I do take Armour...a combo of 90 mg of Armour and 50 of Levothroid (after a year of experimentation to see what worked). Yes, I did used to take $ynthroid, but it quit working for me about fifteen years ago...either that or my body quit metabolizing T4 into T3...and I'll never know.

Both my endocrine surgeon and my endo told me to never, ever take biophosphates...with my calcium metabolism gone wonky, I'd be at risk of actually causing more problems. So I guess I'm free and clear on that topic. I've heard this in other places, too. I'm eternally vigilant about what I take for medication because I live on a knife-edge of exhaustion. I thank God for every day with enough energy to get the things I have to do, done.

I don't trust the pharmas one little bit; altruism is not a word in their vocabulary and I suspect they've done untold harm with their stranglehold on medical practice. Did you know that the FDA relies on the pharmas own testing to approve drugs? Talk about the fox in the henhouse.

Best,

Laurie

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Laurie, Good to hear you are taking Armour. Are you taking it sublingually ?Taken sublingually you get the benefit of the Calcitonin. 90mg isn't a big dose. Normal dose is 120mg - 180mg according to the Drs product sheet. I am on 210mg at the moment and will need more as my temps are not optimal yet. Some of my friends take Boron and Maca for osteo as well as Armour and have improved their osteo by 100% but you need to do your own research there. Just as well that Big Pharma can't stop that :lol:

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I also was just recently diagnosed with severe osteopenia/borderline osteoporosis. (I am a 46 yo male.)

My internist also wanted me to start Fosomax, but I wasn't too excited by the idea. I decided to talk to a friend of mine out of town who is endocrinologist at Harvard. He said under no circumstances should I take Fosomax, it is the exact opposite of what I need. (He said that I should also know that he perscribe tons of Fosomax, so that he isn't anti-Fosomax, it just not what someone with Celiac should be taking.) Fosomax stops the breakdown of of the bone, which for someone with Celiac is just a way of getting calium, which is not the issue many women have after meopause. If you don't allow the body to get it from the bones, there is no other source, so you body will become hypocalcemic, and your nerves won't function. So you need to make sure that you get lots of calcium in your diet, as well as few other vitamins and minerals probably, like folic acid and vitamin D.

After being gluten-free for a while your intestines should improve and you will do better at absorbing the nutrients you are eating.

David

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May I recommend that you all go dairy free? I know that this goes against the standard teaching in the U.S., but believe me dairy is bad for your bones. Please do research on line to educate yourselves. You require less calcium when you get your calcium from plant sources.

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Just a reminder: for every 4 women with osteo there is one male with it also. That amounts to a large number of males! Osteo is NOT just a women's disease.

I know, I am male and I was dx'ed at age 55 after my older brother was dx'ed. I suspect ours is due to some genetic abnormality, of which there are several known. I am gluten, at least wheat, sensitive as determined by dietary experimentation, and I am double DQ1, and totally gluten-free/CF. I'll probably never know the actual cause of my osteo. It did improve with meds to the point that I have now only osteopenia in my spine and my hips are within the normal range. The first meds I was given gave me the most improvement - they were not Fosamax types; I believe it was called Calcitonin. After about a year on that med with good results, my dr retired and prescribed Fosamax which was the new drug on the block as a parting shot. I took Fosamax for 5 yrs and never saw any additional improvement; also didn't see any more degradation which my new dr took as a positive indication. After reading up on some of the latest research on osteo and after some questions re Fosamax began to surface last year, and since I was seeing no further improvement, I quit taking Fosamax last January and am trying the supplement approach (and it's not just calcium - also critical are magnesium, zinc, vitamins D, B12, etc).

Re Fosamax, there is some risk gradually being recognized (osteonecrosis). It is usually believed by the dr's (probably at the recommendation of the drug co's) that the risk of osteonecrosis is much much less than the risk of osteo. In my opinion a more serious issue is that Fosamax gets incorporated into the bones and remains there for many years after one stops taking it, so if more negative side effects do surface as more people use it, one can not just quit taking it and expect immediate relief. In my own non-medically qualified opinion, if I knew I had a malabsoption problem due to gluten sensitivity - I would first try to remedy the malabsorption with a strict gluten-free diet and eliminate dairy as well as previously mentioned in this thread and see if the bone density responded before jumping into meds such as Fosamax.

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In my own non-medically qualified opinion, if I knew I had a malabsoption problem due to gluten sensitivity - I would first try to remedy the malabsorption with a strict gluten-free diet and eliminate dairy as well as previously mentioned in this thread and see if the bone density responded before jumping into meds such as Fosamax.

Yes, I think malabsorption plays a big part. I was tested for Vit D and was low in that and needed supplements to boost that. And Vit D is vital in calcium metabolism. I am hoping the calcitonin I get from my Armour Thyroid meds will take care of the rest. I have always avoided dairy ( except for cheese) as I have long heard that it is not identical enough for us to absorb the nutrients. And low impact exercise like walking is supposed to strengthen bones too. I would be worried about taking a drug that can never be reversed.

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Thanks for sharing your stories everyone. It's good to feel less alone in having a health issue that you are not supposed to get until later on in life.

I have osetopenia at age 28. Not cool. I was shortly screened for it after being dg with celiac disease. I have only had one broken bone so far and that was in a freak accident in 8th grade. Also it was one of the more common bones to break (clavicle). I have never smoked, lifted weights from age 16-23 often, and consume very minimal caffeine so I thought I was doing things right, but it didn't matter since, little did I know, I wasn't absorbing calcium.

I don't know how my teeth are. I've been a very bad patient and haven't been to the dentist for a while. I am going later in the month, so I am bracing myself.

It is inconvenient that I learned I enjoy jumping off things in the snowboard park last winter. I would like to continue doing so for many years and without a broken hip. We'll see how that goes.

The Dr. had me on Fosamax, but I stopped taking after 3-4 months. I don't feel comfortable with how it works and I really don't feel comfortable taking something that may have not been tested thoroughly on women of child bearing age.

I've been taking calcium supplements and started getting back into lifting. Hopefully there will be some progress made.

I feel comforted by others who have been prescribed fosamax but have ceased taking it. I hope we are doing the right thing!

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I was diagnosed with osteoperosis about the same time as Celiac , I take Fosomax. I am now one and onehalf inches shorter than I used to be. At night I move around a lot because if one side doesn't hurt the other does. It just keeps getting better and better...... :)

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May I recommend that you all go dairy free? I know that this goes against the standard teaching in the U.S., but believe me dairy is bad for your bones. Please do research on line to educate yourselves. You require less calcium when you get your calcium from plant sources.

I absolutely agree.

Where do the cows get all their calcium? Green leafy veggies! Go straight to the souce.

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Dear Georgie: I could write chapter and verse on thyroid disease. It's the only diagnosis I had for over 20 years, and I researched it to death. I'm convinced that TSH test, and even FT4 and FT3 don't really give the whole picture. Armour DOES help...no doubt about it, but getting it fine tuned is another topic. I presently take all 90 mg first thing in the morning, along with my levothroid (doc says that there are plenty of T4 receptors, as well as T3, and you need both. We experimented for a year, with me getting tested and tinkered with every four weeks before I found a combo that seemed to work. More Armour without thyroxine seemd to send me hyper without resolving many of the symptoms. Anyhoo.....

The osteo is another topic I know a bit about, because I had hyperparathyroidism (one adenoma removed in April of 2005). I have osteo, no surprise there, because of the overactive parathyroids. We are tinkering now with the idea that it was secondary hyperparthyroidism...due to vitamin D insufficieny. That's where the possibility of Celiac, and the inability to metabolise nutrients comes in. In my youth (!) I was a major sun-worshipper...undoubtedly maintained my vitamin D that way. Now I'm trying to manage it by taking 4,000 mgs of vitamin D a day, after a blood test produced virtually no vitamin D. I tested positive for another adenoma a couple of months ago (though the odds are only 10%).

If I do indeed have Celiac, that explains a whole bunch of things docs have never been able to get a handle on. At one point in my life I was so anemic that I required two blood transfusions. DUH!

Best,

Laurie

Laurie, Good to hear you are taking Armour. Are you taking it sublingually ?Taken sublingually you get the benefit of the Calcitonin. 90mg isn't a big dose. Normal dose is 120mg - 180mg according to the Drs product sheet. I am on 210mg at the moment and will need more as my temps are not optimal yet. Some of my friends take Boron and Maca for osteo as well as Armour and have improved their osteo by 100% but you need to do your own research there. Just as well that Big Pharma can't stop that :lol:

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Before I found out I was gluten intolerant my osteoporosis worsened after 2 years of taking Actonel. Being gluten free allowed my intestines to heal & for my stomach to metabolize what I was eating. My bone & muscle aches stopped after taking a Vitamin D supplement; most celiacs are Vitamin D deficient. You have to have the hydroxy 25 vitamin D test done ( the simple Vitamin D test is not good enuf) Now 2 years after stopping Actonel my bone density has improved and my joint & muscle aches are gone. There is hope for normalization without medication, if you find out the underlying cause of your problem. It is a journey that takes persistence. Good Luck!

Dee

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Has anyone tried the new Forteo injections? My Mother is going to be 86 in a few months . She has been on actonel & fosamax for several years & now has downwager's & is looking frail.The doc suggested she try the injections. I too have been on both pills but after a few months of taking them my throat feels like its closing shut. The side effect for both pills so I had to stop. I had a five % decrease in my bone density from last year... I can't afford the injections at $600.00 a month.My mother isn't sure she wants to do a daily injection either....

I'm hoping if they ever get my thyroid working correctly or medicate it correctly it might help everything ....

mamaw

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Has anyone tried the new Forteo injections? My Mother is going to be 86 in a few months . She has been on actonel & fosamax for several years & now has downwager's & is looking frail.The doc suggested she try the injections. I too have been on both pills but after a few months of taking them my throat feels like its closing shut. The side effect for both pills so I had to stop. I had a five % decrease in my bone density from last year... I can't afford the injections at $600.00 a month.My mother isn't sure she wants to do a daily injection either....

I'm hoping if they ever get my thyroid working correctly or medicate it correctly it might help everything ....

mamaw

My mom has been using Forteo for almost 2 years now. She was diagnosed with osteoporosis several years ago and first did a course of Fosomax with no positive result. Now, after taking the Forteo she is no longer considered osteoporotic. I believe you cannot take Forteo for more than 2 years, so soon she will have to go back to Fosomax or something comparable to maintain the bone density. However, I believe, since she recently went gluten free, that the medication will no longer be necessary as the underlying condition has been addressed.

Christine

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I was diagnosed with osteoporsis in November and dx's with celiacs in Aug. My doctor put me on Actonol once a week. She also did my thyroid and it came down from 25 to 11. I need to call her and get more clarification on things. She said my hydroxy 25 is better as is the calcium, and vitamin D, Also I called her today to get my T-score since now I am trying to learn all about osteo now. So many connections with celiacs, my nephew is and pharmasist (spelled wrong) and he told me to watch out for aches and pains that could be do to the actonol.

Some one talked about teeth, now I know why I had so much trouble with mine.

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Well today I received a call from the doctors office. I had called them to find out what my T-score was, I know that I have osteoporosis, but I what I did not know was the number. I am not very happy with a T-score of

-3.0 she said be really careful. I take 3000mg of calcium and 1200 of Vitamin D. Well anyway I just needed to about it. It made me more depressed than I am already. Take meds for that too. Any more pills oh ya Iron pills lets see is that it, I think so at least for the celiacs and osteo. At least I know and I will get nothing but better with time? :ph34r::(

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