osteoporoses

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harma
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osteoporoses

Post by harma »

I had a bone density measurements three weeks ago and today the GI called with the results. I have a light/mild form of osteoporoses. As long as I am taking my budenofalk I have to use a calcium/vit D preparation. I am already using some "over the counter" version of it. But I will get another now a prescribed one. I haven't spoken to the GI. The message was on the answering machine. Of course I will call him back what this all means in the long term.

Of course I am not happy with this news, but also not surprised. I suffered from an eating disorder in my early 20 for about 5 years, I am sure that didn't do my bones any good. Also one of my grandmothers had osteoporoses. And also I am wondering what good or bad the years of gluten sensitivity did to it.

This is another example that you have to by your own doctor and just ask what you think you need.I asked for this test.

I am sure I am not the first having this problem. Besides taking the calcium vit d pills is there anything else I can do to improve my bone density or at least to make sure it does not get worse?
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Post by Rosie »

Harma, osteoporosis is a problem for many of us. If you take a look at this topic, there is a lot of good information on how to improve it, from strontium citrate supplements to exercise programs. I'm hoping that my next bone density scan will show some improvement, now that I'm gluten free and doing what I can.

http://www.perskyfarms.com/phpBB2/viewt ... =strontium
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Post by Gloria »

Harma,

My osteoporosis doctor said that the best exercise for spinal and hip osteoporosis is walking.

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Post by tex »

Harma,

The most likely cause of your osteoporosis is damage caused by gluten, before you started the diet. Now that you have removed it from your diet, your bones should not deteriorate further, in fact, they should become stronger, as time goes on. It is well documented that untreated gluten sensitivity cause osteoporosis. For example, note this result from the article at the following link:
Eight of the nine patients with osteoporosis maintained a gluten-free diet for a year; in six of the eight, their bones became stronger.
http://health.usnews.com/usnews/health/ ... 50301a.htm

Tex
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Post by Bifcus16 »

Gloria is spot on with the walking.

Our bodies are constantly breaking down and rebuilding bone. You need load bearing exercise (running, walking, or sports like tennis that have you on your feet) to ensure you lay down new bone where it matters.

There is also quite a bit of evidence about the value of curcumin (turmeric) in slowing bone loss. http://margaret.healthblogs.org/life-wi ... bone-loss/

Lyn
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Post by ant »

Dear Friends

Last night I was pulling a boot of my foot and, with just marginal stain, fractured my rib. This is the third time in 18 months that my rib has fractured with slight stress. (If previous episodes are repeated, I am now due for 6 weeks of pain before healing). My bone density test two months ago showed Osteoporosis in my spine and osteopina (spelling) in my hip. There was no test of my ribs, which, so far, is where my fractures have been.

I am 55 and male, but clearly I need to do something about strengthening my bones. However, I do not like the sound of the various drugs. For the last 2 months I have been taking a vitamin D supplement as well as B12 and folic acid. I also just bought a supplement pill called "Osteocare" from Vitabiotics Ltd. But, I am hesitant to start on this because it has 300mg of magnesium and this might start up D :roll: anyone had any experience of magnesium?

I am still on 3 Entocort per day so this probably is not helping. My GI wanted me to change to Asacol but I have not done so yet since my D is continuing to gradually improve with Entocort and diet. I have only had D three times since 23rd November (last D was 21st Dec) and currently have had 6 continuous days of Normal to firmish BMs. :grin: :grin: I am wondering if now I should try to reduce Entocort from 3 to 2 or if I should take my GI suggestion and try to switch to Asacol, especially given the Osteoporosis?

All best, Ant
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Post by JLH »

Ant, I am so sorry to hear about your fracture. I hope and pray you mend quickly.

I hope Tex or Polly can answer your questions.

I was hesitant to take magnesium in pill form for the very reason you stated.....
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

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Post by shekoe »

Dear Ant,
Just adding my sympathetic toughts. You have bee such a support fom many MC sufferers. Maybe your bone strength will improve as your body rids itself of the toxic effects of gluten. Good luck. Sheila
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Post by Rosie »

I'm suprised when you had your bone density scans done 2 months ago, that with your history they didn't bother to check your ribs too. Maybe the machines aren't set up to scan ribs??? My mother with her osteoporosis also had ribs as her most vulnerable spot. Interestingly, it was 15 years after she had several rib faratures that she had her first hip fracture, so hopefully you have time to get your bones strengthened. I suspect that ribs are particularly vulnerable because they are thinner. Also, after she had those several rib fractures, she has never had any more in the past 10 years, which has suprised me. She is 93 years old, and recently has had some compression fractures in her spine.

I'm not sure what makes the most difference: the bone-thinning affects of steroids, not so bad with Entocort, or the affects of gluten inflamation on intestinal absorbstion and direct bone thinning. If it were me, I would think that getting the MC under control would have the greatest positive affect.

I have researched this because I have been diagnosed with osteopenia, and have a family history with my mom. Also, I fit the category of "skinny, white, menopausal female". I do the following:

1. Calcium citrate (1500 mg/day) and Vit D supplements (6000 U/day)
2. Keep my MC under control, because that contributes greatly to osteoporosis.
3. Take strontium citrate supplements. It's supposed to strengthen bone like floride does for teeth.
4. Weight-bearing exercise. There are lots of exercise programs around the internet. I use the program developed at Oregon State University where I used to work. There is lots of published information of how it actually can increase bone density.
http://oregonstate.edu/research/oregon/ ... steoporsis
new site: http://extension.oregonstate.edu/physicalactivity/bbb (administrator)
5. Good balanced diet. Of course that assumes that I can do it given my restrictions, but I try. I haven't been able to pack on more weight yet, which tells me that my gut isn't healed yet even though I'm doing pretty good symptom-wise. I've never been heavy. Right now I weigh about 117 pounds and am 5'5''. The lowest I got was 110 lbs, and the heaviest (non-preggers) was 132 lbs. I would love to put on at least 5 lbs to give myself a "cushion" in case i have a flare.

It's really distressing how many different parts of the body MC can affect besides the gut!

Rosie
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Post by tex »

Ant,

Man, that's a real bummer. I'm sorry to hear that, for sure, and especially the fact that it has happened before.

I agree with all of Rosie's suggestions. I think that her reasoning, and recommendations, are right on target.

Here are my own thoughts, (in addition to what has already been posted):

My first recommendation is to get a good boot jack.

Are you satisfied that you are not a celiac? Maybe your doctors made a mistake. You have both celiac genes. Your anti-gliadin IgA was relatively high, and so was your anti-TTG IgA result at Enterolab. The only contraindication for a celiac diagnosis, was your fecal fat score, at under 300. I really believe that gluten damage is the primary cause of osteoporosis in someone in your situation, (IOW, too young, and the wrong gender, to be having osteoporosis issues).

That's why I agree with Rosie, that the MC needs to be controlled, before trying to reduce the budesonde intake. Many new members hesitate at the thought of following a very restricted diet, to control their MC, since that's not likely to be a well-balanced diet, and therefore, not good for their health. My response to that is: "Hey! - compared with what the MC is doing to their body, a balanced diet is a moot point, for the moment". Regardless of what they eat, they are not going to have a balanced nutrient intake, until their MC is under control. Get it under control first, and then worry about fine-tuning the diet, to bring it into better balance.

Anyway, my point is, I'm afraid that if you discontinue the budesonide, and start using mesalamine, you will promptly be back at square one, with your MC symptoms. Since you are sensitive to casein, (and along with it, almost surely, lactose), you may even react adversely to Asacol. If you're going to switch, at least switch to something without lactose, (such as Lialda).

While it may not be near as good as a carefully choreographed exercise program, remember that walking is a form of load-bearing exercise, and it has the advantages of being easy to do, can be done almost anywhere, even on the spur of the moment, and it requires no special equipment, (except maybe walking shoes, or hiking boots - which are not a requirement, but certainly help to make one's feet more comfortable.

FWIW, I take a 250 mg magnesium tablet every other day. If I take it every day, I can count on mild, (not secretory), D.

Remember, I'm not a doctor, and I don't even own a white coat, (except for the white sport coat I bought while I was in high school, but I'm sure that it wouldn't fit, anymore). :lol:

Good luck with this,
Tex
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Post by Gloria »

Ant,

I'm so sorry to read that you've had rib fractures. They are very painful, aren't they?

I agree with Tex that as a male under 60, you don't fit the normal profile of someone at risk for osteoporosis.

I also agree with Rosie that your MC and accompanying inflammation are probably more responsible for the osteoporosis than your diet and/or lack of calcium. I have been extremely conscientious about consuming adequate calcium my entire life, but I still have osteoporosis. I believe it's due to MC and my small frame (5'2", 106 lbs., presently). I've read that obese or overweight people don't get osteoporosis, presumably because the excess weight gives them load-bearing exercise.

I take two different types of calcium citrate supplements (about 1200 mg.) throughout the day. One includes magnesium, the other doesn't. Taking more than 100% the MDR of magnesium seemed to cause looser stools. I also take about 3,000 IUs of vitamin D per day.

You might want to get your vitamin D level checked, or begin taking supplements. My osteoporosis doctor said that nearly everyone has too low of a vitamin D level. He was surprised that mine was normal. He recommended walking as the best exercise, but I'm not sure that walking, or any exercise for that matter, gives the rib cage the resistance it needs to build up the bone density.

I also think strontium citrate supplements are better than some of the prescription drugs. Unfortunately, it gave me headaches and I had to discontinue it. It's worth a try and not too expensive.

I think it's fabulous that you've only had D three times since Nov. 23. You are definitely on the mend. I wouldn't stop taking Entocort completely, but you might be able to reduce to one every other day.

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Post by tex »

Gloria wrote:I've read that obese or overweight people don't get osteoporosis, presumably because the excess weight gives them load-bearing exercise.
Hmmmmmm. I wasn't aware of that. I suppose that's further proof that, as they say, there's a silver lining to every cloud. If that's the case, then walking, while wearing a loaded backpack, should be a good way to get the job done.

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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by ant »

Dear Joan, Sheila, Rosie, Tex and Gloria,

Many, many thanks for your concern and good advice. I have been traveling the last few days and am now back in Asia following my Christmas UK trip (traveling with a fractured rib ain't too much fun! :crutches:).

Before I left London I went to a well known complementary medicine clinic called the Hale Clinic. I was able to find a number of supplements that do not have ingredients to which I am intolerant. I am now stocked up with separate: Zinc, Calcium, vit K, vit D, vit B and Folic acid pills (no magnesium at present).

Here were my November vitamin scores....
CoEnzyme Q10 = 0.67 – moderate (normal range 0.18 – 2.70)
a – Tocopherol (Vit E) = 21.1 – low (normal range 17.61 – 71.36)
y – Tocopheral = 0.74 – low (normal range 0.51 – 8.23)
Lycopene = 0.16 – low (normal range 0.11-1.37)
b-Carotene = 0.38 – low (normal range 0.12-3.78)
a–Cartotene = 0.03 – low (normal range 0.02-0.58)
Vitamin A (Retinol) = 2- excellent (normal range 1.06-3.09)
Ascorbate (vitamin C) = 17.63 – very low (normal range 19.25-130.25)
Vitamin B12 = 118 pg/ml – low (reference range 180-914)
Folic Acid = 2.2 ng/ml– low (reference range 3.6-20.0)
In another test I remember my Zinc was very low. I cannot remember my score for vit D but I know it was also low. (I will take a look at it when I get to my office).

It strikes me I should check my vit K and calcium levels (and also testosterone as that may also be an indicator).

I am reading a book on Osteoporosis at the moment that suggest that too much acid in the blood requires the bones to give up minerals to bring the blood PH back into balance; and that therefore a balanced alkali/acid diet is the key to halting/restoring bone strength.

Sheila said:
Maybe your bone strength will improve as your body rids itself of the toxic effects of gluten.
I am hoping this is true. I refuse to believe that lost bone strength is "forever". (If my bones where diamonds that would be different!!)

Rosie said:
I'm surprised when you had your bone density scans done 2 months ago, that with your history they didn't bother to check your ribs too. Maybe the machines aren't set up to scan ribs???
I never told them about the ribs - did not put 2 and 2 together until this third fracture.:???: I hired them to do the tests independently from my GP and GI - both of whom never recommended such tests (How dare my GI say MC is a "nuisance" disease when it is so strongly related to osteoporosis and he never advised me about it. If it where not for this website I never would have thought of osteoporosis testing). I am taking all your advice. Still need to check out 'strontium citrate', what does it do?
It's really distressing how many different parts of the body MC can affect besides the gut!
No kidding!

Tex said.
Are you satisfied that you are not a celiac?


Well, I have never been given a specific Celiac test (I do not think they tested my blood and they certainly did not do a endoscopy). I now tend to look at it the other way around. How many "Celiac's" are satisfied they are not "MC" (according to recent data at least 20% of Celiacs are likely to have MC.). I too suspect malabsorption. I lost a lot of weight in the first 9 months of symptoms. But maybe I have been malabsorbing for many years - is that possible without obvious symptoms?

Anyway the exercise regime you recommend is exactly what others have told me and is good advice.

Now to the issue of Entocort and Salofalk. It seems I am still making good progress with diet and Entocort. I had another D on the 12th January (first since 21st November but was back to firm BMs the next day). 12th January excepted, I have had firm/normans everyday for the last 10 days!! :lol: I have not yet done what my GI wanted, which is to start Salofalk. I will give it a few more days before I decide what to do. I want to do as Gloria suggests and start to taper off Entocort (without shifting to Salofalk), but I am risking a bust-up with my GI in March unless I either say I am in remission so did not take the Salofalk or that I did as he recommended.

Gloria said;
I'm not sure that walking, or any exercise for that matter, gives the rib cage the resistance it needs to build up the bone density.
Excellent point. I will ask the doctor, but of course it is the spine and hip that presents more danger (not just pain).
I have been extremely conscientious about consuming adequate calcium my entire life, but I still have osteoporosis.


The book I am reading points out that osteoporosis in regions where people do not drink much milk/eat much cheese is lower than in countries with a western diet - suggesting that lack of calcium intake my not be the key to osteoporosis.

Wishing you all wellness and the happiness of knowing that people care - as indeed they do!!!

Best, Ant
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Post by harma »

Hi Ant, that is quite a story. You too are dealing with osteoporosis? and a rib fracture? Due to the osteoporoses? Hope it will get better soon. I am surprised that a bone density scan is not standard procedure in cases of chronicle bowel diseases in general. Malabsorption is general symptom with any IBD and it is such a simple procedure and relative cheap. Cheaper than all the bone fractures 20 years later. Research and testing to prevent disease or further damage is not very common (yet) in modern medicine. The same with the enterolab testing. Is not covered by my health care insurance, but if I want entocort for the rest of my life, no problem. Hopefully this will change in future. What is the title of the book you are reading on osteoporoses? Sounds very interesting. I have heard that before that how much calcium you need depends on your food habits (how acid or alkali your blood is) and a wrong Ph takes calcium from the bones or prevents the body to absorb it. All due to the modern diet (yet another point for the hunters gatherers diet and another example of a modern time disease due to our life style/food habits).
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Post by tex »

Ant,

Here's a popular blog on strontium citrate:

http://strontiumforbones.blogspot.com/2 ... trial.html
Ant wrote:But maybe I have been malabsorbing for many years - is that possible without obvious symptoms?
Definitely. Not only is celiac disease often "silent", until clinical symptoms present, but even in fully developed celiac sprue, a small percentage of patients remain asymptomatic, (i.e., display no clinical symptoms). Because of that, many celiacs are diagnosed after they are diagnosed with osteroporosis, when one of their doctors happens to recognize the implications, and tests the patient for celiac disease.
Ant wrote:The book I am reading points out that osteoporosis in regions where people do not drink much milk/eat much cheese is lower than in countries with a western diet - suggesting that lack of calcium intake my not be the key to osteoporosis.
Not only that, but the body seems to have a built-in mechanism which allows it to shift priorities, when it perceives significant trends in important functional patterns. For example, when the body senses that it is losing heat faster than it can generate it, and the core temperature is dropping, (hypothermia), it shuts down circulation to the extremities, in an effort to concentrate on preserving vital organs. When food is in short supply, it lowers metabolism, in order to make it go farther. If the diet is low in a particular vial element, (such as calcium), it will tend to use the calcium that it has, as efficiently, as possible.

On the other hand, if the diet always contains excess calcium, the body will see no need to try to preserve calcium, and what it doesn't need will probably be excreted, (rather than stored). That effect is even seen with things such as cholesterol. If cholesterol is low in the diet, the body produces what it needs to make up the perceived shortfall, and in addition, it produces more than it needs, and stores some of it for future use, (just in case it's needed). If the diet contains excessive amounts of cholesterol, the body makes no effort to store it. If it weren't for that effect, the statins would be much more potent. That effect, (together with the seasonally-fluctuating levels of vitamin D), may be why cholesterol levels are normally lower in the summer, than they are in winter, because paleo winters were times of hunger, and paleo springs were times of plenty, so that by summer, the body was no longer trying to store cholesterol, (so levels went down). When late fall/winter arrived, the cycle began to reverse, as the body began to store cholesterol, to counter smaller amounts in the diet. Remember, genetically, we are not very different from our paleo ancestors.

Also, since milk is a neolithic food, I would surmise that the body might still have paleolithic programming that prompts it to view milk as a food for consumption only during infancy, and consequently, changes in metabolism, after infancy, (due to paleo genes), may prevent us from properly utilizing the calcium in milk for purposes such as bone strength management, later in life. IOW, the body may not properly recognize the calcium in milk, (nor utilize it), the way we assume that it should. :shrug: Be aware that this is just my theory, and I haven't seen, (nor have I searched for), any research results that verify it, so take it for what it's worth. I may be all wet, but that seems to be the way it works, in the real world.

Tex
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