So sorry to read of your problems, Harma & Ant. Hopefully being GF will restore what you have lost.
FWIW, I take this: http://www.vitalnutrients.net/vnestore/ ... id=VNON180
as well as another 4000 IU of Vit D-3 a day since being Dx w/MC. I also take 3 Ligament Restore by Pure Encapsulations, as I've had some major joint issues due to overuse and the inflammation from years of untreated gluten sensitivity was likely eating away at my cartilage. I wonder if strengthening your ligaments might help?
Osteoporosis runs in my family, my mom and 4 of my sisters have/had it. The 3 oldest are very affected by osteoporosis and arthritis and all walk stooped over - as did our Mom and her Mom. The other sister has passed away but she was Dx w/Ankylosing Spondylitis prior to her death. As a precaution, I've been taking calcium for over 20 years, but only recently have added the large dose of D-3 on advice of my ND and although I've never had a bone density test, as I recall, I do not seem to have the same problems with posture and bone loss. All of us women are now aware of the gluten issue that we all likely share/shared. Although I am the only one GF so far, I'm working on getting them to see if they also share the double DQB genes I have, as my Enterolab tests said that I got one gene from each parent.
Fortunately I do not have the multiple food intolerances that you both seem to share so many of.
I hope your rib heals quickly, Ant, that sounds horribly painful.
osteoporoses
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
You are so right! That is also additional proof of the stupidity of allowing insurance companies to determine which health care procedures are available to us, and which are not. This is one area, (insurance company policies), where government regulators are really asleep at the wheel, and it's no wonder - the insurance companies know how to "buy" politicians, by "investing" plenty of "campaign contributions" where they will do the most good.Harma wrote: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.
Tex
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.
Hi there,
Just read someplace recently that the type of osteoporosis that people with celiac disease have doesn't respond as well to the usual vit D and calcium plus exercise. It does respond to medication.
Problem is that there's an antibody in celiacs that attacks something (I forget now) that has to do with the bone, so that's the difference.
Of course if one is not absorbing calcium and maybe other nutrients or getting enough vit D or exercise, it would be important to have those added, but the medication seems to be the answer for the many who have celiac disease. Can't say how that applies to those without proven celiac disease. My hunch is that it's the same with anyone who has the associated gene that goes with this other antibody.
Have decided this is just what I'm going to have to do before it's too late. Sis has already begun Boniva, and only had a little indigestion and then, only with the first dose. Fact that it's only taken once a month helps with the upper gi issues.
best wishes, luce
Just read someplace recently that the type of osteoporosis that people with celiac disease have doesn't respond as well to the usual vit D and calcium plus exercise. It does respond to medication.
Problem is that there's an antibody in celiacs that attacks something (I forget now) that has to do with the bone, so that's the difference.
Of course if one is not absorbing calcium and maybe other nutrients or getting enough vit D or exercise, it would be important to have those added, but the medication seems to be the answer for the many who have celiac disease. Can't say how that applies to those without proven celiac disease. My hunch is that it's the same with anyone who has the associated gene that goes with this other antibody.
Have decided this is just what I'm going to have to do before it's too late. Sis has already begun Boniva, and only had a little indigestion and then, only with the first dose. Fact that it's only taken once a month helps with the upper gi issues.
best wishes, luce
Luce,
You've got a good memory. I had forgotten about that article, since only about 20% of celiacs produce the antibodies that attack the protein that regulates bone removal, osteoprotegerin, (OPG). Here's a link to the article:
http://www.sciencedaily.com/releases/20 ... 171735.htm
I'm not sure how significant that finding actually is, however, since the other 80% of celiacs also have an osteoporosis problem, and they don't produce those antibodies. Of course, if you happen to be one of the 20%, then it might be important.
Tex
You've got a good memory. I had forgotten about that article, since only about 20% of celiacs produce the antibodies that attack the protein that regulates bone removal, osteoprotegerin, (OPG). Here's a link to the article:
http://www.sciencedaily.com/releases/20 ... 171735.htm
I'm not sure how significant that finding actually is, however, since the other 80% of celiacs also have an osteoporosis problem, and they don't produce those antibodies. Of course, if you happen to be one of the 20%, then it might be important.
Tex
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.
Dear Harma
The book is called "Understanding, Preventing & Overcoming Osteoporosis" by Professor Jane Plant and Gill Tidey, published in 2003 by Virgin Books (paperback published in 2004)
Dear Tex
Thanks for the link on Strontium Citrate. It is interesting that it seems to help to increase osteoblasts (the making of new bone) and decrease osteoclasts (the removal of old bone).
Dear Stanz,
Thanks for your concern and the link - more useful information.
I hope your bones stay strong, you have certainly been doing all you can to look after them.
Dear Tex and Luce,
The information on OPG is very interesting (and a bit scary). 20% is still high for something that "quickly" weakens bones. Given the obvious (and proven) links between MC and Celiac I would guess 20% may well also be the odds for MCers
To quote from the link:
Now, I need to find out how I can get tested for the antibodies. The good news is that there is a whole new part of the body I will now have to study in addition to the GI tract!!
All best, Ant
The book is called "Understanding, Preventing & Overcoming Osteoporosis" by Professor Jane Plant and Gill Tidey, published in 2003 by Virgin Books (paperback published in 2004)
Dear Tex
Thanks for the link on Strontium Citrate. It is interesting that it seems to help to increase osteoblasts (the making of new bone) and decrease osteoclasts (the removal of old bone).
Dear Stanz,
Thanks for your concern and the link - more useful information.
I hope your bones stay strong, you have certainly been doing all you can to look after them.Dear Tex and Luce,
The information on OPG is very interesting (and a bit scary). 20% is still high for something that "quickly" weakens bones. Given the obvious (and proven) links between MC and Celiac I would guess 20% may well also be the odds for MCers
To quote from the link:
Testing for these antibodies could make a real and important difference to the lives of people with celiac disease by alerting us to the risk of osteoporosis and helping us find the correct treatment for them."
Now, I need to find out how I can get tested for the antibodies. The good news is that there is a whole new part of the body I will now have to study in addition to the GI tract!!
All best, Ant
I'm just guessing, of course, but I have a hunch that the link is celiac genes. IOW, those of us with celiac genes, and gluten sensitivity, (IOW, the genes have been triggered), probably share in that risk, along with celiacs. Unfortunately, as you are aware, you have a copy of both of the main celiac genes.Ant wrote:Given the obvious (and proven) links between MC and Celiac I would guess 20% may well also be the odds for MCers
Of course, the key may be, as you suggest, gluten sensitivity due to any genetic arrangement, since both Dr. Fine, and Dr. Hadjivassiliou have shown that there are other genes that not only predispose to gluten sensitivity, (which most of us have, obviously), but which are also linked with classic celiac disease.
Good luck with your quest,
Tex
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.
Luce, (and anyone else interested in this topic),
What do you think about this article, claiming that vitamin D is harmful to patients with autoimmune disease? Note the last sentences in the article:
Vitamin d supplementation over the past decades has been so low as to be inconsequential, since it doesn't even make up for the shortfall of vitamin D from the sun, that humans used to receive, a few decades ago. IOW, IMO, their argument disproves their own premise, because vitamin D intake has actually been depressed, over the past few decades. And, if these "unknown pathogens that cause autoimmune disease" grow so slowly, as they claim, then the very recent significant increases in the supplementation of vitamin D have certainly not had sufficient time to have any measurable effect on the long-term dynamics of autoimmune disease in general.
My opinion is that someone just wanted to publish a sensational, contrary claim, even though they didn't have a shred of valid evidence, on the outside chance that by some miracle, they might turn out to be right.
It is interesting, though, that they share my view that all autoimmune disease is caused by some unknown pathogen. 
http://esciencenews.com/articles/2009/0 ... ne.disease
Tex
What do you think about this article, claiming that vitamin D is harmful to patients with autoimmune disease? Note the last sentences in the article:
Herein lies the basis of my main reason for discrediting this article:"Vitamin D is currently being recommended at historically unprecedented doses," states Amy Proal, one of the paper's co-authors. "Yet at the same time, the rate of nearly every autoimmune disease continues to escalate."
That logic appears to be invalid, primarily because it is based on the bald-faced and simplistic assumption that most foreign cells are harmful, and as far as I can tell, there is absolutely no basis for making that assumption. That's a "Chicken Little" view of the situation.the paper contends that 25-D's actions must be considered in light of recent research on the Human Microbiome. Such research shows that bacteria are far more pervasive than previously thought – 90% of cells in the body are estimated to be non-human – increasing the likelihood that autoimmune diseases are caused by persistent pathogens, many of which have yet to be named or have their DNA characterized.
They outline how long-term harm caused by high levels of 25-D has been missed because the bacteria implicated in autoimmune disease grow very slowly. For example, a higher incidence in brain lesions, allergies, and atopy in response to vitamin D supplementation have been noted only after decades of supplementation with the secosteroid.
Vitamin d supplementation over the past decades has been so low as to be inconsequential, since it doesn't even make up for the shortfall of vitamin D from the sun, that humans used to receive, a few decades ago. IOW, IMO, their argument disproves their own premise, because vitamin D intake has actually been depressed, over the past few decades. And, if these "unknown pathogens that cause autoimmune disease" grow so slowly, as they claim, then the very recent significant increases in the supplementation of vitamin D have certainly not had sufficient time to have any measurable effect on the long-term dynamics of autoimmune disease in general.
My opinion is that someone just wanted to publish a sensational, contrary claim, even though they didn't have a shred of valid evidence, on the outside chance that by some miracle, they might turn out to be right.
It is interesting, though, that they share my view that all autoimmune disease is caused by some unknown pathogen. http://esciencenews.com/articles/2009/0 ... ne.disease
Tex
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.
Does anybody have any sense on how to 'measure' osteoporoses after a scan. My score was 2,4. I have a booklet about osteoporoses from a Dutch osteoporoses foundation that says, scores -1 sd and higher are normal, scores -1 - 2,5 means ''osteopenie'(Dutch word don't know the English version of it means something like less both density), - 2,5 and lower is called osteoporoses. So than I think my - 2,4 is almost real osteoporoses. But according to my GI it is not that bad, it is a minor deviation. It is just how you measure. In his opinion -2 is still normal "it is just how you measure". I am a bit confused now. Can anybody help me to solve this problem?
Next to a calcium supplement I am also going to use a bis phosphonate supplement (my translation from Dutch hope you all understand what I mean). I am not sure just calcium will be enough. Has anyone here any experience with bis phosphonate supplements?
Next to a calcium supplement I am also going to use a bis phosphonate supplement (my translation from Dutch hope you all understand what I mean). I am not sure just calcium will be enough. Has anyone here any experience with bis phosphonate supplements?
Harma,
In English, the term is "osteopenia", and most doctors consider it to be a precursor to osteoporosis. Go to the site at the link below, and scroll down to where it says:
How to read your Bone Density DEXA Scan.
There you will see the scale that is used for DEXA scans. Note that the "Normal Bone Density" range is based on DEXA scores for healthy people in their 20's.
http://www.parathyroid.com/osteoporosis.htm
I'm not a doctor, of course, but IMO, now that you are carefully following the GF diet, as long as your diet includes the nutrients your body needs, and you get a reasonable amount of exercise, your bone density should begin to improve.
Tex
P. S. This phrase in that article caught my eye:
In English, the term is "osteopenia", and most doctors consider it to be a precursor to osteoporosis. Go to the site at the link below, and scroll down to where it says:
How to read your Bone Density DEXA Scan.
There you will see the scale that is used for DEXA scans. Note that the "Normal Bone Density" range is based on DEXA scores for healthy people in their 20's.
http://www.parathyroid.com/osteoporosis.htm
I'm not a doctor, of course, but IMO, now that you are carefully following the GF diet, as long as your diet includes the nutrients your body needs, and you get a reasonable amount of exercise, your bone density should begin to improve.
Tex
P. S. This phrase in that article caught my eye:
I wonder how many of us have undiagnosed parathyroid disease. I'm aware of at least one or two members who have mentioned being diagnosed.In fact, it is a bad idea to take drugs such as Fosamax, Actonel, Evista, Boniva, and Reclast as an alternative to parathyroid surgery. None of these drugs has EVER been shown to help in patients with parathyroid disease, and the makers of these drugs do not recommend them for this purpose. Similarly, the use of Fosamax and/or Actonel (or any of the rest of these drugs) for the treatment of osteoporosis due to parathyroid disease is NOT an FDA approved use of these drugs. MANY people are put on these medications, but they have never been shown to help...UNTIL the parathyroid gland has been removed.
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.
Thank you Tex, I always ask my questions here, because whatever the problem is, you will come up with an answer. You may not be a doctor (as you always say) but you know a lot about medicine. You have no idea how great this help is for me in with dealing and accepting my disease. Support is also important, but for me even more important is information. Information on the MC, the relation with gluten, knowing one you start a diet, it takes a while before you notice a difference and can expect remission, relation with other diseases.
Over time more and more things I can put in its place. Symptoms over the last years, my bowel problems (getting worse and worse over the years), the unexplainable fatigue, sleeping problems (I know now for sure a restless bowel was the main course), concentration problems (brain fog). Things easily get to much etc etc etc. So in a certain way it is a blessing the MC got so worse last spring and got diagnosed. Hopefully the diet will solve all the problems too. I will ask my GI doc if my blood was checked for parathyroid disease. Thanks tex for bringing that to my attention. I just read a book from the library on osteoporoses. In there this disease is also mentioned as a cause of osteoporoses. Also it says very rare disease under 50. Well where did we hear that before, very rare under 50 ,
I will give the biophosophantes a second thought and maybe first start with different type of exercise and using calcium/vit d supplements.
Over time more and more things I can put in its place. Symptoms over the last years, my bowel problems (getting worse and worse over the years), the unexplainable fatigue, sleeping problems (I know now for sure a restless bowel was the main course), concentration problems (brain fog). Things easily get to much etc etc etc. So in a certain way it is a blessing the MC got so worse last spring and got diagnosed. Hopefully the diet will solve all the problems too. I will ask my GI doc if my blood was checked for parathyroid disease. Thanks tex for bringing that to my attention. I just read a book from the library on osteoporoses. In there this disease is also mentioned as a cause of osteoporoses. Also it says very rare disease under 50. Well where did we hear that before, very rare under 50
, I will give the biophosophantes a second thought and maybe first start with different type of exercise and using calcium/vit d supplements.
Dear Harma
Note that bisphosphonates has been mentioned as one of the drugs that can be associated with LC. (source: Fernandez-Banares Am J Gastro 2007).
http://www.nature.com/ajg/journal/v102/ ... 0753a.html
This may need some more looking into.
All the best to you, Ant
Note that bisphosphonates has been mentioned as one of the drugs that can be associated with LC. (source: Fernandez-Banares Am J Gastro 2007).
http://www.nature.com/ajg/journal/v102/ ... 0753a.html
This may need some more looking into.
All the best to you, Ant
Dear All,
I was looking at Medscape Today website and came across this response to Srontium and Osteoporosis...
I think that the response is from someone whose job it is to PR pharma drugs [Disclosure: Gayle Nicholas Scott, PharmD, BCPS, ELS, has disclosed the following relevant financial relationships:Employed by a commercial interest: UBC Scientific Solutions] so should be read with that in mind (especially the last sentence?). Anyway quite informative. Note my highlight in red. Maybe this treatment too will be hard for MCers. I wonder what it is about Strontium that could cause Diarrhea?
All best, Ant
I was looking at Medscape Today website and came across this response to Srontium and Osteoporosis...
I think that the response is from someone whose job it is to PR pharma drugs [Disclosure: Gayle Nicholas Scott, PharmD, BCPS, ELS, has disclosed the following relevant financial relationships:Employed by a commercial interest: UBC Scientific Solutions] so should be read with that in mind (especially the last sentence?). Anyway quite informative. Note my highlight in red. Maybe this treatment too will be hard for MCers. I wonder what it is about Strontium that could cause Diarrhea?
Hope this is useful...Question
I've seen a few articles about the effect of strontium supplements on osteoporosis. What do you think?
Response from Gayle Nicholas Scott, PharmD, BCPS, ELS
Assistant Professor, Eastern Virginia Medical School, Norfolk, Virginia; Clinical Pharmacist, Chesapeake Regional Medical Center, Chesapeake, Virginia
Strontium is located on the periodic table in the alkali earth metal group, the same group that includes calcium. Strontium is used for a variety of indications ranging from an ingredient in toothpaste for sensitive teeth (Sensodyne®, GlaxoSmithKline, Research Triangle Park, North Carolina) to strontium-89 (Metastron™, GE Healthcare, Waukesha, Wisconsin) for metastatic bone pain. Strontium is widely promoted for treatment of osteoporosis. In Europe, strontium ranelate is available as a prescription drug. In the United States, strontium is a dietary supplement available as the carbonate, chloride, citrate, gluconate, and sulfate salts. The US Food and Drug Administration (FDA) granted strontium malonate investigational new drug (IND) status.
Most drugs for osteoporosis inhibit bone resorption. Available antiresorptive agents include bisphosphonates (alendronate, risedronate, ibandronate, and zoledronic acid), estrogen, selective estrogen modulators (raloxifene), and calcitonin. Parathyroid hormone (teriparatide) and fluoride stimulate bone formation. Strontium ranelate is unique in that it appears to act by both of these mechanisms.[1]
Strontium ranelate is comprised of 2 atoms of strontium and the organic acid ranelic acid. Product information about strontium ranelate on the Website of the European Medicines Agency, the European Union equivalent of the FDA, explains the choice of the ranelate salt with "the organic part permit[s] the best compromise in terms of molecular weight, pharmacokinetics and acceptability of the medicinal product."[1] The bioavailability of strontium ranelate ranges from 19% to 27%; food and calcium products reduce its already low bioavailability by 60%-70%.[1]
The safety and efficacy of strontium ranelate for osteoporosis have been investigated in 4 randomized, double-blind, placebo-controlled trials. Three trials evaluated strontium ranelate 0.5-2 g/day for osteoporosis treatment,[2-4] and 1 study evaluated 125 mg-1 g/day for osteoporosis prevention.[5] For treatment, strontium ranelate 2 g/day for 3 years reduced vertebral fractures by 37% (relative risk [RR] 0.63; 95% confidence interval [CI] 0.56, 0.71) and nonvertebral fractures by 14% (RR 0.86; 95% CI 0.75, 0.98). Lower doses were superior to placebo, but reduction in vertebral fractures and increase in bone mineral density were greater with 2 g/day.[6] A recent study of women with osteoporosis taking strontium ranelate 2 g daily for 8 years showed sustained increases in bone mineral density.[7] In all studies, patients took supplemental calcium and vitamin D.
Diarrhea is the most common adverse effect associated with strontium ranelate, usually occurring with higher doses. Data suggest that patients receiving strontium 2 g/day for 3-4 years have a higher risk for vascular side effects (eg, blood clots) and nervous system side effects (eg, seizures).[6]
All research published in peer-reviewed journals is on strontium ranelate. A phase 2 study on strontium malonate has been published as a meeting abstract.[8] No credible research is available on other strontium salts, and the bioavailability and effectiveness of these products are unknown.
For patients concerned about osteoporosis prevention, emphasize the importance of weight-bearing exercises and adequate calcium and vitamin D intake. For patients with diagnosed osteoporosis, FDA-approved treatments are indicated. Tell patients that dietary supplements containing strontium are unproven and should be avoided.
All best, Ant