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Palvyre

Celiac disease and osteoporosis

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Was anyone else diagnosed with osteoporosis shortly after a Celiac diagnosis?  Were you able to reverse the bone loss?  I was diagnosed at age 38. Almost 3 years gluten-free now. 

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I have Osteoporosis and was diagnosed two months after my celiac disease diagnosis.  It was found when I fractured two vertebrae.  My last Bone scan showed that there has been no improvement -- but that is good news for me.  I am post menopausal.  Not much chance of building bone at my age.  I take no supplements, but exercise a lot and eat a very healthy gluten-free diet.  

At 38, you should still have a chance to build bone if your hormones are okay.  

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I also have osteoporosis due to my Celiac. I had a short fall and compressed 3 vertebrae, and during the treatment for all the chronic pain and such, both were diagnosed around the same time.. Same age range. Right around 40. I was told there was no reverse for bone loss, but hopefully avoiding gluten would not make it worse than it was already. The only medication they could prescribe had long term effects (jaw and femur fractures) and they wouldn't give it to someone my age. Only for people in their 60's and such. I have had numerous bone scans since, and I have not been sent to any new specialists, so I assume the bone density is holding relatively steady.

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11 hours ago, Ken24 said:

I also have osteoporosis due to my Celiac. I had a short fall and compressed 3 vertebrae, and during the treatment for all the chronic pain and such, both were diagnosed around the same time.. Same age range. Right around 40. I was told there was no reverse for bone loss, but hopefully avoiding gluten would not make it worse than it was already. The only medication they could prescribe had long term effects (jaw and femur fractures) and they wouldn't give it to someone my age. Only for people in their 60's and such. I have had numerous bone scans since, and I have not been sent to any new specialists, so I assume the bone density is holding relatively steady.

Actually, the bone meds should only be given to people in the late 70's and up age group....those side effects can occur in anyone of any age.  With time, they are being shown to not be as effective as claimed.  They are heavily used in conjunction with chemo treatments, which unfortunately is needed.  But, along with Cyclinglady, I am another post menopausal almost 58 year old and I have osteoporosis in my spine.  I do exercise and eat a healthy diet and add calcium supplements to my diet because I do very little dairy.  I have not lost any height, which is one of the markers I use for self tracking the condition. Not much you can do about it at an older age, once the hormones have left.  However, I have moved on and don't worry about it. I keep up with all the healthy stuff and let the worry go....it isn't good to worry about this stuff. If you keep your muscles strong and fit, it goes a long way to keep you from breaking any bones or falling.

My last bone scan showed I am holding my own, with no more destruction so I consider that a small victory. If you still have hormones, whether male or female, you should be able to build some bone back but it will take some work.

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Interesting on the height thing. I am a 40 year old male. I've lost 2" in height since I was 18. Hadn't connected that to this. 

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2 hours ago, Palvyre said:

Interesting on the height thing. I am a 40 year old male. I've lost 2" in height since I was 18. Hadn't connected that to this. 

Losing height is a big red flag for bone issues.  Also, there is a minimum weight that men and women have to be in order to build bone on your own without doing exercise or every day activities.  For women, it is around 126 pounds and for men, I believe, it is 145.  So, if you are a thin Celiac, it can be a problem.  I fall into this category so I will be a member of a gym until I die.  Not such a bad thing....once you start exercising, you feel so much better it becomes addictive.  But at 40, you should be able to build bone but I would advise having testosterone levels checked because you need good levels to help with bone growth.

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32 minutes ago, Gemini said:

Losing height is a big red flag for bone issues.  Also, there is a minimum weight that men and women have to be in order to build bone on your own without doing exercise or every day activities.  For women, it is around 126 pounds and for men, I believe, it is 145.  So, if you are a thin Celiac, it can be a problem.  I fall into this category so I will be a member of a gym until I die.  Not such a bad thing....once you start exercising, you feel so much better it becomes addictive.  But at 40, you should be able to build bone but I would advise having testosterone levels checked because you need good levels to help with bone growth.

I am moderately overweight, though I exercise regularly. I have a hefty appetite and never seem to feel full. I take vitamin D supplements for low vitamin D. I am hoping that my dexa scan this year will show an improvement.  I eat quite a bit of cheese (which is why I am overweight), but I crave it. I am completely lactose intolerant and have fructose malabsorption. The cheese I eat is sharp cheddar with 0g of lactose.  I have fatty liver disease as well. My PCP thinks it's because my body was in starvation mode for so long. About 4 years ago I started getting tons of cavities, a cracked tooth, and pits in my teeth. I had only 1 cavity my whole life up to that point. Then I've had  well over 30 cavities in the last 4 years. 

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18 hours ago, Palvyre said:

I am moderately overweight, though I exercise regularly. I have a hefty appetite and never seem to feel full. I take vitamin D supplements for low vitamin D. I am hoping that my dexa scan this year will show an improvement.  I eat quite a bit of cheese (which is why I am overweight), but I crave it. I am completely lactose intolerant and have fructose malabsorption. The cheese I eat is sharp cheddar with 0g of lactose.  I have fatty liver disease as well. My PCP thinks it's because my body was in starvation mode for so long. About 4 years ago I started getting tons of cavities, a cracked tooth, and pits in my teeth. I had only 1 cavity my whole life up to that point. Then I've had  well over 30 cavities in the last 4 years. 

You should be able to improve your bone density then.  But please be patient as it can take a while for it to happen.  Healing from Celiac will teach you patience so do not become discouraged if improvement doesn't happen right away.  Having the extra weight will help with bone growth.

You sound like a true Celiac to me!  All of these problems you have are common to us.  Liver problems, teeth issues, bone problems.....this is the ugly side of malabsorption.  Just be strict with your diet and you may be surprised to see all these things get better.  The liver has an amazing capacity for self healing so that should improve over time.

For feeling full, I would suggest those healthy fats like olive oil, coconut oil, and yes, lean meat.  A nice big salad with a chunk of protein on it can be very satisfying.  I know how you feel.  In the beginning, it was hard to feel full after being bloated with every meal, pre-diagnosis.  That will all even out as healing occurs.  With each passing year, you will feel stronger. I have been doing this for 12 years now and am a totally different person than the one I was at diagnosis. I still have multiple AI diseases but am in much better health. I would also suggest, if you can manage the cost, to have your teeth cleaned by the dentist every 3 months instead of 6. In reality, people should go every 3 months but insurance companies will only pay for 2 cleanings a year.  Dentists go every 3 months.  I go every 3 and it really helps keep plaque growth in check. Most dentists will offer a lower price for cleanings if you are paying cash. Teeth are so important and we are challenged in that department.

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5 hours ago, Gemini said:

You should be able to improve your bone density then.  But please be patient as it can take a while for it to happen.  Healing from Celiac will teach you patience so do not become discouraged if improvement doesn't happen right away.  Having the extra weight will help with bone growth.

You sound like a true Celiac to me!  All of these problems you have are common to us.  Liver problems, teeth issues, bone problems.....this is the ugly side of malabsorption.  Just be strict with your diet and you may be surprised to see all these things get better.  The liver has an amazing capacity for self healing so that should improve over time.

For feeling full, I would suggest those healthy fats like olive oil, coconut oil, and yes, lean meat.  A nice big salad with a chunk of protein on it can be very satisfying.  I know how you feel.  In the beginning, it was hard to feel full after being bloated with every meal, pre-diagnosis.  That will all even out as healing occurs.  With each passing year, you will feel stronger. I have been doing this for 12 years now and am a totally different person than the one I was at diagnosis. I still have multiple AI diseases but am in much better health. I would also suggest, if you can manage the cost, to have your teeth cleaned by the dentist every 3 months instead of 6. In reality, people should go every 3 months but insurance companies will only pay for 2 cleanings a year.  Dentists go every 3 months.  I go every 3 and it really helps keep plaque growth in check. Most dentists will offer a lower price for cleanings if you are paying cash. Teeth are so important and we are challenged in that department.

Thanks for the feedback. I don't eat out at all or take risks with food. My sensitivity went nuclear after being gluten-free for about 6-8 weeks. As a result I can't eat out at all, I tried a couple times early on and it didn't work. As a result now after 3 years gluten-free I am symptom free. I still have the limitations with lactose intolerance, fructose malabsorption etc. but all of my multiple a day tummy troubles are all gone. On advice of my dentist I bought an electric toothbrush. It's works wonders for keeping plaque under control. Mine times how long you brush and vibrates to let you know each 30 seconds that goes by. I split my mouth into regions and do 30 seconds each for a total of 2 minutes. I also get fluoride treatments every time I go to the dentist. Hopefully my tooth health is under control. 

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Eating out can be tricky and it really depends on where you live and how much knowledge a restaurant has.  I am extremely sensitive but can eat out successfully at a few places that are my go to places.  I live in the Boston area of Massachusetts and the knowledge here is very high.  Probably because of all the teaching hospitals we have. Two of my favorite places to eat are owned by Celiac's so they get it right every time.

Reactions in the beginning and for a number of years for me were bad.  I would get very sick.  That has changed, with time.  I no longer have the GI blow-outs I used to get and I think it is because I have healed.  I still will have some GI upset but it is minimal compared to what used to happen. I now get more neuro reactions, which is weird because I had more gastro symptoms than neuro, pre-diagnosis. You may find that, over time, this may happen to you also. I am super careful with everything so it's been 2 1/2 years since my last glutening.  I am trying to set a record......;)

Those toothbrushes are awesome!  I have one also and your teeth feel like they have had a dental cleaning after each use. I love them.

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5 hours ago, Gemini said:

You should be able to improve your bone density then.  But please be patient as it can take a while for it to happen.  Healing from Celiac will teach you patience so do not become discouraged if improvement doesn't happen right away.  Having the extra weight will help with bone growth.

You sound like a true Celiac to me!  All of these problems you have are common to us.  Liver problems, teeth issues, bone problems.....this is the ugly side of malabsorption.  Just be strict with your diet and you may be surprised to see all these things get better.  The liver has an amazing capacity for self healing so that should improve over time.

For feeling full, I would suggest those healthy fats like olive oil, coconut oil, and yes, lean meat.  A nice big salad with a chunk of protein on it can be very satisfying.  I know how you feel.  In the beginning, it was hard to feel full after being bloated with every meal, pre-diagnosis.  That will all even out as healing occurs.  With each passing year, you will feel stronger. I have been doing this for 12 years now and am a totally different person than the one I was at diagnosis. I still have multiple AI diseases but am in much better health. I would also suggest, if you can manage the cost, to have your teeth cleaned by the dentist every 3 months instead of 6. In reality, people should go every 3 months but insurance companies will only pay for 2 cleanings a year.  Dentists go every 3 months.  I go every 3 and it really helps keep plaque growth in check. Most dentists will offer a lower price for cleanings if you are paying cash. Teeth are so important and we are challenged in that department.

Gemini, you sound like you could be my sister!  ??

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1 hour ago, cyclinglady said:

Gemini, you sound like you could be my sister!  ??

That has occurred to me before!  We both share many of the same problems. We are a mirror image.....West Coast and East Coast versions.....:P

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Palvyre,

Have you looked into Vitamin K.

See this webmd link

http://blogs.webmd.com/integrative-medicine-wellness/2008/10/vitamin-k2-but-not-vitamin-k1-is-helpful-for-bone-density.html

People with GI problems often have trouble absorbing our fat soluble vitamins.  Vitamin K (not just Vitamin D) is important for bone health/density.  Fat soluble vitamins should be taken with food for best absorption.

I also highly recommend looking into Magnesium CITRATE or Glycinate 3/day for energy, fatigue, muscle cramps, restful dreams and yes bone health.

Ennis_Tx just posted a topic thread about the many benefits of Magnesium.

Here is the thread about how Magnesium (or the lack there of can negatively effect your health)

You should really read it thoroughly if you are having bone issues.  I will quote a few key points but I have found it helped my bone pain/ early onset arthritis in my 30s and they haven't come back since taking Magnesium CITRATE 3/day.

Quoting from the https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ link referenced in the thread by Ennis_tx under the Osteoporosis paragraph talking about the many benefits of Magnesium.

Quoting

Osteoporosis

"Magnesium is involved in bone formation and influences the activities of osteoblasts and osteoclasts [48]. Magnesium also affects the concentrations of both parathyroid hormone and the active form of vitamin D, which are major regulators of bone homeostasis. Several population-based studies have found positive associations between magnesium intake and bone mineral density in both men and women [49]. Other research has found that women with osteoporosis have lower serum magnesium levels than women with osteopenia and those who do not have osteoporosis or osteopenia [50]. These and other findings indicate that magnesium deficiency might be a risk factor for osteoporosis [48].

Although limited in number, studies suggest that increasing magnesium intakes from food or supplements might increase bone mineral density in postmenopausal and elderly women [1]. For example, one short-term study found that 290 mg/day elemental magnesium (as magnesium citrate) for 30 days in 20 postmenopausal women with osteoporosis suppressed bone turnover compared with placebo, suggesting that bone loss decreased [51]."

Actually taking PPI's too long (more then 6 months usually) can make you low in Magnesium because your body can no longer absorb it because your stomach acid is too low.

Dr. Carolyn Dean the author of the book "The Magnesium Miracle" says when lacking Magnesium to balance out Calcium the cascade effect of not having enough Magnesium can lead to bone loss.

Quoting one of the 20+ plus health benefits of taking Magnesium.

"Osteoporosis- Use of calcium with Vitamin D to enhance calcium absorption without a balancing amount of Magnesium causes further Mg deficiency, which triggers a cascade of events leading to bone loss."

I hope this is helpful.

**** this is not medical advice just my own personal experience from taking Magnesium CITRATE.

Ask or PM Ennis_TX he will tell you he couldn't live without Magnesium to help with energy and fatigue.

posterboy,

 

 

 

 

 

 

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1 hour ago, Posterboy said:

Palvyre,

Have you looked into Vitamin K.

See this webmd link

http://blogs.webmd.com/integrative-medicine-wellness/2008/10/vitamin-k2-but-not-vitamin-k1-is-helpful-for-bone-density.html

People with GI problems often have trouble absorbing our fat soluble vitamins.  Vitamin K (not just Vitamin D) is important for bone health/density.  Fat soluble vitamins should be taken with food for best absorption.

I also highly recommend looking into Magnesium CITRATE or Glycinate 3/day for energy, fatigue, muscle cramps, restful dreams and yes bone health.

Ennis_Tx just posted a topic thread about the many benefits of Magnesium.

Here is the thread about how Magnesium (or the lack there of can negatively effect your health)

You should really read it thoroughly if you are having bone issues.  I will quote a few key points but I have found it helped my bone pain/ early onset arthritis in my 30s and they haven't come back since taking Magnesium CITRATE 3/day.

Quoting from the https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ link referenced in the thread by Ennis_tx under the Osteoporosis paragraph talking about the many benefits of Magnesium.

Quoting

Osteoporosis

"Magnesium is involved in bone formation and influences the activities of osteoblasts and osteoclasts [48]. Magnesium also affects the concentrations of both parathyroid hormone and the active form of vitamin D, which are major regulators of bone homeostasis. Several population-based studies have found positive associations between magnesium intake and bone mineral density in both men and women [49]. Other research has found that women with osteoporosis have lower serum magnesium levels than women with osteopenia and those who do not have osteoporosis or osteopenia [50]. These and other findings indicate that magnesium deficiency might be a risk factor for osteoporosis [48].

Although limited in number, studies suggest that increasing magnesium intakes from food or supplements might increase bone mineral density in postmenopausal and elderly women [1]. For example, one short-term study found that 290 mg/day elemental magnesium (as magnesium citrate) for 30 days in 20 postmenopausal women with osteoporosis suppressed bone turnover compared with placebo, suggesting that bone loss decreased [51]."

Actually taking PPI's too long (more then 6 months usually) can make you low in Magnesium because your body can no longer absorb it because your stomach acid is too low.

Dr. Carolyn Dean the author of the book "The Magnesium Miracle" says when lacking Magnesium to balance out Calcium the cascade effect of not having enough Magnesium can lead to bone loss.

Quoting one of the 20+ plus health benefits of taking Magnesium.

"Osteoporosis- Use of calcium with Vitamin D to enhance calcium absorption without a balancing amount of Magnesium causes further Mg deficiency, which triggers a cascade of events leading to bone loss."

I hope this is helpful.

**** this is not medical advice just my own personal experience from taking Magnesium CITRATE.

Ask or PM Ennis_TX he will tell you he couldn't live without Magnesium to help with energy and fatigue.

posterboy,

 

 

 

 

 

 

Thanks for the information.  I can't handle magnesium citrate, it acts like a laxative. I used to have all kinds of muscle issues when I was first diagnosed. Now, 3 years gluten-free, I don't have those issues anymore. Fortunately, I don't have energy issues, unless I get glutened. That knocks me out. 

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1 hour ago, Palvyre said:

Thanks for the information.  I can't handle magnesium citrate, it acts like a laxative. I used to have all kinds of muscle issues when I was first diagnosed. Now, 3 years gluten-free, I don't have those issues anymore. Fortunately, I don't have energy issues, unless I get glutened. That knocks me out. 

Palvyre,

The citrate form if taken in an oral solution as sold for pre-surgical flushes is usually 10x the RDA amount.  when found as pill or liquidgel at 200mg with 4 our hours between doses does not usually do this when 200 mg is exceeded every 4 hours.

That said since citrate can flush.  Try finding the Glycinate form it doesn't usually flush people.

I mentioned the citrate because it usually easiest to find of the highly biovaialble forms.

Gylycinate is also highly available and I think it is the form Ennis_tx uses for the reasons you mention.

Glycinate tends to be a little more expensive and why I typically use the citrate because I know to space it out and not to take more than 200mg every 4 hours.

both forms should provide the same benefit.

You might also try Kefir also if casein is not a problem for you.  It is 99% lactose free and can help magnesium and calcium absorbtion when used a probiotic.

The name Kefir in it's native tongue means good feeling and many people feel better after sipping on it as a probiotic to help digestive issues.

Think of it is as liquid yogurt.  It is fermented milk with about 12 active cultures or more sometimes that can help us absorb our calcium and magnesium.

I hope this is helpful.

posterboy,

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On 3/19/2017 at 7:32 PM, Palvyre said:

Was anyone else diagnosed with osteoporosis shortly after a Celiac diagnosis?  Were you able to reverse the bone loss?  I was diagnosed at age 38. Almost 3 years gluten-free now. 

Palvyre-  There are a lots of things that contribute to osteoporosis. I am wondering if you had your testosterone levels checked as well? There are many treatments for osteoporosis, depending on the cause. Fosamax (bisphosphanates) are certainly not the only ones!

Hormones, Prolia, Forteo and there are several new ones ready to be approved by the FDA right now. If you haven't seen an endocrinologist, you could consider it. I figure it never hurts to ask a specialist a question.  They could say there's no extra treatment right now or they could know of something that was meant just for someone like you.

My fourth grade teacher taught me there are never any dumb questions! :)

Good luck!

 

 

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8 hours ago, TexasJen said:

Palvyre-  There are a lots of things that contribute to osteoporosis. I am wondering if you had your testosterone levels checked as well? There are many treatments for osteoporosis, depending on the cause. Fosamax (bisphosphanates) are certainly not the only ones!

Hormones, Prolia, Forteo and there are several new ones ready to be approved by the FDA right now. If you haven't seen an endocrinologist, you could consider it. I figure it never hurts to ask a specialist a question.  They could say there's no extra treatment right now or they could know of something that was meant just for someone like you.

My fourth grade teacher taught me there are never any dumb questions! :)

Good luck!

 

 

All of the bone meds are not recommended for younger people.  Too many people had serious side effects from them.  My doctor actually said she would not recommend them and I was near to 50 when she said that.  Exercise, exercise, exercise is what they want people to do and it will stop osteoporosis in younger people, even without hormones.  But you gotta work it!

If testosterone levels are low in men, bio-identical hormones are the best to use.  The Rx testosterone treatments come with huge risks....heart attacks and stroke.  Like hormones for women, the pharmaceutical ones carry a lot of risk. People really need to do their homework when doctors start peddling these medications.

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