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astyanax

Osteoporosis

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hi, i'm wondering if anyone can help me understand my recent diagnosis of osteopenia and osteoporosis.

i was diagnosed in 1998 and have gluten-free ever since. i never cheat on the diet and i go with assumption that everything has gluten and work backwards from there. i rarely have stomach problems anymore (and can almost always trace it back to something eaten outside of the home). overall, i consider myself healthy. i exercise, eat well and have not struggled with my diet since that first year of diagnosis.

i recently went for a check up. my doctor said my gluten-free blood work was excellent (i forget the technical name) and complimented me for sticking very closely to the diet. he said my vitamin D was also excellent, which surprised him. only thing low was B12, so i am now on a supplement.

i had my first ever bone density scan. that came up quite negative. i am a 29 year old female. my doctor said i have osteopenia and small amount of osteoporosis.

my question is this: why do i have this? i have done excellent at being gluten-free for years. my vitamin D is great. I happen to naturally choose a calcium rich diet, including yogurt daily, a lot of cheese, ice cream, tofu, things like that. is there something wrong with my gluten-free diet then? i don't understand how, especially when the doctor said there was no gluten in my blood work up.

any help or guidance is greatly appreciated.

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Hey -- your story hit close to home.

I'm 33 years old. REcently diagnosed. I have some bone pain so my doctor had me go in for a bone density scan. I'm awaiting the results.

I have no insight to provide beyond what my doctor indicated: The loss of bone density is related to untreated celiac disease. So, this means that the damage was being done prior to my diagnosis (and perhaps this is the case for you) when my small intestine was still unable to absorb calcium. In addtion, the damage to my small intestine was pretty severe so it will take some time before I am able to fully absorb nutrients/calcium, etc.

In addition, I'm pretty small framed and this is another risk factor.

FYI - as soon as I was diagnosed with celiac, I was put on loads of calcium and vitamin d.

K-Dawg.

hi, i'm wondering if anyone can help me understand my recent diagnosis of osteopenia and osteoporosis.

i was diagnosed in 1998 and have gluten-free ever since. i never cheat on the diet and i go with assumption that everything has gluten and work backwards from there. i rarely have stomach problems anymore (and can almost always trace it back to something eaten outside of the home). overall, i consider myself healthy. i exercise, eat well and have not struggled with my diet since that first year of diagnosis.

i recently went for a check up. my doctor said my gluten-free blood work was excellent (i forget the technical name) and complimented me for sticking very closely to the diet. he said my vitamin D was also excellent, which surprised him. only thing low was B12, so i am now on a supplement.

i had my first ever bone density scan. that came up quite negative. i am a 29 year old female. my doctor said i have osteopenia and small amount of osteoporosis.

my question is this: why do i have this? i have done excellent at being gluten-free for years. my vitamin D is great. I happen to naturally choose a calcium rich diet, including yogurt daily, a lot of cheese, ice cream, tofu, things like that. is there something wrong with my gluten-free diet then? i don't understand how, especially when the doctor said there was no gluten in my blood work up.

any help or guidance is greatly appreciated.

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other risk factors, just making things worse:

I smoked from the time I was 14 until age 20. I also drink copious amounts of coffee (the jury may still be out on the coffee link, but I"m sure it hasn't helped)

So it may be a culmination of many factors.

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What was your D level? I believe "they" (researchers) have raised the levels for better health. I believe 60 to 80 is what they now recommend. I'm working my way up from 20.

Start pumping iron and jumping rope or do some jumping jacks everyday. You are young, you can rebuild your bones. Also, lay off the soda - it sucks magnesium from your body - which is needed to build good bone.

Take care!

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I have also upped my D vitamin.

Can exercise really rebuild bone? I just figured it made you stronger; thus, less likely to fracture (but I have not researched anything about this)

THanks

KDAWG

What was your D level? I believe "they" (researchers) have raised the levels for better health. I believe 60 to 80 is what they now recommend. I'm working my way up from 20.

Start pumping iron and jumping rope or do some jumping jacks everyday. You are young, you can rebuild your bones. Also, lay off the soda - it sucks magnesium from your body - which is needed to build good bone.

Take care!

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As k-dawg said, the osteopenia/osteoporosis is probably more related to the bone density already lost before you were diagnosed with Celiac disease. The other consideration is the fact that osteoporosis can be due to other factors besides Celiac disease. Many people have osteoporosis but do not have Celiac disease. It can be a hereditary condition whose exact mechanism is unknown.

You are young enough that you might benefit from a bone building drug such as Fosamax. Talk to you doctor about it. There is a lot of controversy over these drugs.

Another issue is the fact that we now know from recent studies that Celiacs diagnosed as adults don't experience the regeneration of their microvilli as well as children do, even though they are very strict about remaining gluten free. So, most adults, even after going gluten free continue to have malabsorption problems. Of course, we should still be diligent about avoiding gluten so we don't experience more damage to or small intestines than we already have.

By the way, I am a 58-year-old male celiac who was diagnosed six years ago and I have osteopenia. A recent follow-up endoscopy/biopsy showed my microvilli had not recovered and there were still signs of inflamation even though I have been very careful to eat gluten free.

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I have also upped my D vitamin.

Can exercise really rebuild bone? I just figured it made you stronger; thus, less likely to fracture (but I have not researched anything about this)

THanks

KDAWG

Yes it can help. It needs to be weight bearing excercise but that combined with the calcium and D supplementation should help. Hopefully with your being young that will reverse the process.

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Are you also getting enough magnesium and zinc? Magnesium also can be low in celiacs, and at least one study has noted that calcium supplementation for celiacs isn't NEARLY as useful as magnesium supplementation.

Exercise can help, but it must be weight bearing, impact exercise. So, walking's ok; jogging's better. The repeated high stress along the length of the bone stimulates osteoblasts to remineralize the bones. So, weight lifting can work as well, but it needs to be a large enough load that you tire in 5 reps or so, not 20.

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Thanks Tarnelberry -- this is good information wrt to the type of exercises. I did some light weight lifting today, but I did 30 reps!!!!! I usually do low weight, high reps. I see I need to do this differently.

I actually just started taking magnesium yesturday.

Are you also getting enough magnesium and zinc? Magnesium also can be low in celiacs, and at least one study has noted that calcium supplementation for celiacs isn't NEARLY as useful as magnesium supplementation.

Exercise can help, but it must be weight bearing, impact exercise. So, walking's ok; jogging's better. The repeated high stress along the length of the bone stimulates osteoblasts to remineralize the bones. So, weight lifting can work as well, but it needs to be a large enough load that you tire in 5 reps or so, not 20.

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Re: development of osteoporosis (a cautionary tale). In 1995 I had a bone density scan which showed my bones so strong and dense I was told I would never have trouble with osteoporosis. At about the same time my husband had a whole body bone density scan which gave the same result. The testers were amazed how good our bones were, especially for our ages (mid-fifties). In July 2006 we both had DEXA scans; my husband had osteopenia and I had fallen to just above that level. In Nov. 2007 we both went gluten free(undiagnosed). In June 2008 I had a back injury/fall landing heavily on my butt and have had trouble with my back ever since. In January 2009 I had my doctor test my nutrient levels and was deficient in B12, D, folate, and began supplementation. In June 2009 I had an x-ray of my back which showed a compression fracture at T-11 which had obviously come from the fall a year before, and osteoporosis. So in two years I had progressed from okay to osteoporosis. Needless to say, my husband is now on supplementation too. I am still weighing the benefits of the so-called bone-building drugs in someone my age. I have just had another DEXA scan and don't have results back yet.

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thanks for all the helpful suggestions. i exercise a lot but i need to increase my strength training / weight lifting to target bone buildup. i'll also ask my doctor about magnesium and zinc, i didn't know there was a connection.

my main concern though is that everything i read says there is a likelihood of osteoporosis with undiagnosed celiac in someone around my age. but i have been diagnosed so long! and my doctor says i'm doing fine on my diet. it is frustrating.

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As k-dawg said, the osteopenia/osteoporosis is probably more related to the bone density already lost before you were diagnosed with Celiac disease. The other consideration is the fact that osteoporosis can be due to other factors besides Celiac disease. Many people have osteoporosis but do not have Celiac disease. It can be a hereditary condition whose exact mechanism is unknown.

You are young enough that you might benefit from a bone building drug such as Fosamax. Talk to you doctor about it. There is a lot of controversy over these drugs.

Another issue is the fact that we now know from recent studies that Celiacs diagnosed as adults don't experience the regeneration of their microvilli as well as children do, even though they are very strict about remaining gluten free. So, most adults, even after going gluten free continue to have malabsorption problems. Of course, we should still be diligent about avoiding gluten so we don't experience more damage to or small intestines than we already have.

By the way, I am a 58-year-old male celiac who was diagnosed six years ago and I have osteopenia. A recent follow-up endoscopy/biopsy showed my microvilli had not recovered and there were still signs of inflamation even though I have been very careful to eat gluten free.

There is an article I found on this website that addresses this issue. It talks about "gluten free" may actually cause more bacterial overgrowth which inhibits digestion and absorption. I think they are referring to the many "gluten free" grains and new products that were developed for us. They are harder to digest and may actually irritate the intestines. Gluten free oatmeal is discussed. It isn't always tolerated and can cause damage for some. (For some celiacs - more likely older celiacs).

I do not eat these foods. I eat fresh meat, fresh or frozen veggies, and fresh or frozen fruit, olives, pickled foods. No sugar, starch, unfermented dairy or grains. I make my own yogurt and eat it everyday. It is rich in calcium and probiotics. It has healed my intestine and I am better. I will go back to the Dr. soon and find out how I am doing, but I want to wait another month or two for the dexa scan. I'm much stronger now and actually have muscles again and lots of energy. I am a 53. I may not rebuild bone anymore, but I hope I can stop any further deterioration.

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mushroom, I'm sorry to hear about what you've gone through. Thank you for sharing. It means we all have to be vigilent.

With respect of chatycady's comments, I tend to agree. I have found that recently I"m experiencing some stomach pain and bloating when eating gluten free grains. I had decided, prior to reading her/his post, that I would start to eat whole foods from the earth as well as chicken and turkey. I was a vegetarian prior to diagnosis, but have found it difficult to remain one.

I get my DEXA scan results next week. A bit nervous as I do have lots of bone pain. Fingers crossed.

I plan to implement the suggestions gleaned in this topic.

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mushroom, I'm sorry to hear about what you've gone through. Thank you for sharing. It means we all have to be vigilent.

With respect of chatycady's comments, I tend to agree. I have found that recently I"m experiencing some stomach pain and bloating when eating gluten free grains. I had decided, prior to reading her/his post, that I would start to eat whole foods from the earth as well as chicken and turkey. I was a vegetarian prior to diagnosis, but have found it difficult to remain one.

I get my DEXA scan results next week. A bit nervous as I do have lots of bone pain. Fingers crossed.

I plan to implement the suggestions gleaned in this topic.

Good luck to you! I hope the change will help. Just a warning of caution on turkey and chicken. Find ones that are not processed or are minimally processed. Many brands inject a solution which can also irritate the intestine. FYI.

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