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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Osteoporosis
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11 posts in this topic

Hi all,

 

I was diagnosed with celiac and have been completely gluten free for 2 years.  At that time I had a dexa scan and was diagnosed with osteopenia.  I've been eating healthy foods and plenty of calcium for the past 2 years, but my repeat dexa scan just showed my numbers falling into osteoporosis in my spine.  (Went from -2.3 two years ago to -2.8 now.)  I'm 55, went through menopause at the average age, and am otherwise in pretty good physical shape.  My doctor put me on bisphosphonates, took away my running and other high-impact or bending/twisting activities.  I'm now taking in even more calcium (and trying to juggle it with my iron pill), walking and beginning strength training.  

 

From your experience, there a realistic chance of my spine healing to some extent?  My score went downhill even though I've been gluten free (and repeat blood tests have confirmed I'm not getting into any unintentional gluten).   Maybe it just takes that much time for my gut to heal so I can start absorbing calcium again--or is it too  late?  I could tell you all how hard it is to deal with this on top of the problems and isolation of celiac, but you're all walking the same road and understand.

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yes! :) to expecting improvement.

 

My numbers improved a bit in 2 years, which my doc and I celebrated, although they still indicate slight osteopenia. I hope they improve even further.

 

I take 1500 mg cal/ 1000 mg/mag/1000 ius D. He has had me on this dosage for nearly a year now.

 

Besides calcum-rich dairy products, I eat a lot of green leafies for cal boost and I drink coconut milk. 

 

i can't eat soybeans, but these are the best foods you can eat for calcium,

  • Spinach
  • Kale
  • Okra
  • Collards
  • Soybeans
  • White beans

 

I started weight training and weight bearing exercises like walking and yoga since my constant joint and muscle pain has subsided since diagnosis--and I believe this has contributed to the better numbers on the Dexa scan.

 

I know I am not the only that can give you a positive report and I hope those gals will chime in soon. 

 

Do not think it can't be reversed. Just  keep at it! 

All the best, Irish

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I had a dexa scan last July after fracturing two vertebrae (T7 and T9) doing nothing and just after four months of getting my celiac disease diagnosis. It showed 1 point just above osteoporosis (officially osteopenia) but my doctor suspects osteoporosis in my upper back. I did some reasearch and asked for hormonal therapy (bio-identical) since I was within 1 year of menopause. The request was granted and I started talking more calcium (1500 mg/day)/mag and Vit.D.

I had to give up my bike and running for a year. No problem since I was trying to heal fractures. Instead i walked, taught water aerobics and lamely lifted a few hand weights. It took almost a year for my back to completely heal (no pain or numbness from shifting during normal activities). Started running and riding my road bike close to a year later. Carried a heavy day backpack through Europe this past month and felt no back pain, so I think my bones are improving. I even went roller skating for 4 hours two days ago! I confess that I barely skated backwards because I was afraid of a kid falling and forcing me to fall. You should see those day camp kids skate with their little "walkers" as it is hysterical!

I do not get another bone scan for another year, so I do not know if I am really building bone, but it think I am.

I looked into drugs, but wanted to try hormones first (low cancer risk in my family). I wanted to make sure I was building good bone on top of cleared off bone. You might want to research how the bone drugs work and the side effects of more fractures. If time, hormones and weight-bearing exercise do not cut it, then I will re-consider drugs.

Keep at it! It is possible to build bone, it just takes time. Let's face it, it takes lots of time just to heal from celiac disease!

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I am in the same boat and I think whether you improve or not has many different variables.  I am 55 and post menopausal by 10 years. I am also petite and on a fat day weigh 112 pounds, which may be part of the problem.  I am not as good as some about taking supplements. I do take them everyday but I don't think it is enough. It is hard because I also take thyroid hormone, which can interfere with calcium like iron does if taken too closely together. I try to get some calcium from my diet so only take about 800 mg in supplement form, per day.  But do I run around counting mgs of calcium ingested frm everything?  No, I don't because I work full time, manage celiac and all the cooking that it entails, work out twice a week weight training for the bones and try to fit in some fun and family visits in between. It can be very stressful.

 

I have osteoporosis in my spine and osteopenia in my hip. After 3 years of weight training (lifting heavier weights for someone my size), no improvement but I did stop the progression.  It was the same as 3 years prior and my doctor was happy with that.  I was pissed.  I worked my ass off and no improvement expect I stopped it from getting worse?

 

Here is what I learned......you have to weigh at least 126 pounds as a female to make bone on your own, doing none of the above.  I will never weigh 126 pounds.  I also take thyroid hormone and my doctor kept insisting I was taking too much because of my numbers on the blood work.  I do not go by numbers on my blood work unless I become symptomatic.  I tried cutting it down but didn't get far because I started having symptoms of low thyroid again.  On my dose she thought was too much, I did not have any symptoms of taking too much. Balancing all this is a huge pain in the ass.  I am keeping it where it is because being symptomatic for low thyroid does not work.  You cannot function.

 

I am not sure at this point if someone my size can build bone again and get to normal density.  I am not worried about it too much as I read an article from Dr. Christian Northrup on Osteoporosis and she pointed out that the weight of a bird is fine for their delicate bone structure...they do not go around breaking bones because they have teeny tiny bones.  I also may never have gained much bone density because I am pretty sure I have had Celiac for decades...since childhood.  You can't lose what you never had. What I do know is that I have much stronger muscles, which help to keep a person steady and prevent falls later in life when I am really old.  That is important because

falls are what break bones, not the fact that you have osteo.  I plan on weight training until I croak. I do not take biophosphonates and that is a story for another day.

 

Maybe it will happen eventually that my bones improve in the other direction but I am not obsessing about it any more. I do what I can and keep moving and exercising.  Will tweak my supplements some also.  The good news is I have never broken a bone and I have had some serious spills where I should have broken some and didn't. That works for me!

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.  The good news is I have never broken a bone and I have had some serious spills where I should have broken some and didn't. That works for me!

 

You know me, Lucy Ricardo and I am stunned that I have not broken anything either. I tore up ligaments in my ankle two years ago (Doc said it would have been better if I had just broken it so he could have set it) and I have tripped over my own shoes often enough and fallen on my arms, hands. Just bruised. whew! Aside from 3 broken ribs once (don't ask--stupid freak accident involving ice and a pole fence) :huh: and a broken toe (did that just sitting on a sofa--geesh)  I've been fortunate, too.

 

I hope I didn't just jinx myself....

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You know me, Lucy Ricardo and I am stunned that I have not broken anything either. I tore up ligaments in my ankle two years ago (Doc said it would have been better if I had just broken it so he could have set it) and I have tripped over my own shoes often enough and fallen on my arms, hands. Just bruised. whew! Aside from 3 broken ribs once (don't ask--stupid freak accident involving ice and a pole fence) :huh: and a broken toe (did that just sitting on a sofa--geesh)  I've been fortunate, too.

 

I hope I didn't just jinx myself....

Could you clarify that statement, Irishheart?  You were pole dancing on some ice...... :)

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What? Must be over 126 pounds to build bone? Yikes, I will never hit that weight!

I did get two fractures in my back just laying myself down on the ground on my tummy before passing out (too much fried gluten-free chicken and post gallbladder surgery, I guess). Ended up in the hospital because I complained that my back hurt and I could not get off the floor. Docs just worried about my heart. My heart is in great shape. Everyone just overlooked my back until my follow-up visit with my GP. Even then he just mentioned the T9 vertebrae. Did not find out about the second fracture until I requested my hospital records. (Request all medical records, folks!!!!)

My thyroid stabilized after going gluten-free for six months while at the same time finally reaching menopause. My thyroid was whacked out for about two years (swinging wildly from hyper to hypo within days) and I attributed it to the final years of perimenopause though it could have been celiac disease related. I would rather run hypo than hyper any day, but luckily, hypos are not horrible for me. I try to keep up on testing to monitor hypers so that it won't interfere with bone building. I do not want to run hyper ever again.

But osteo will weaken bones and doing simple chores around the house can cause fractures. My best biking buddy's mom, who in her 80's, suffered from over 18 fractures in one year alone. Her vertebrae just kept crumbling. Hummm...she was Swedish, bet she had celiac disease..........

Now, where are my calcium supplements? Time to take a dose.

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Could you clarify that statement, Irishheart?  You were pole dancing on some ice...... :)

 

 

:lol: pole fence...it was pole fencing, wise guy! lol  It was buried in snow and running low on the ground.about 1 foot high...guy put it there so kids would not ride their bikes on his lawn.....slipped on the ice, went down thinking" Oh I'm all right, it's a big pile of fluffy snow going to cushion my fall... nope...pole broke 3 ribs....ugh

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What? Must be over 126 pounds to build bone? Yikes, I will never hit that weight!

I did get two fractures in my back just laying myself down on the ground on my tummy before passing out (too much fried gluten-free chicken and post gallbladder surgery, I guess). Ended up in the hospital because I complained that my back hurt and I could not get off the floor. Docs just worried about my heart. My heart is in great shape. Everyone just overlooked my back until my follow-up visit with my GP. Even then he just mentioned the T9 vertebrae. Did not find out about the second fracture until I requested my hospital records. (Request all medical records, folks!!!!)

My thyroid stabilized after going gluten-free for six months while at the same time finally reaching menopause. My thyroid was whacked out for about two years (swinging wildly from hyper to hypo within days) and I attributed it to the final years of perimenopause though it could have been celiac disease related. I would rather run hypo than hyper any day, but luckily, hypos are not horrible for me. I try to keep up on testing to monitor hypers so that it won't interfere with bone building. I do not want to run hyper ever again.

But osteo will weaken bones and doing simple chores around the house can cause fractures. My best biking buddy's mom, who in her 80's, suffered from over 18 fractures in one year alone. Her vertebrae just kept crumbling. Hummm...she was Swedish, bet she had celiac disease..........

Now, where are my calcium supplements? Time to take a dose.

One of the things I learned from the article I read is that the DEXA scan tells you bone density but does not tell anything about the quality of your bone. Small, petite people may show lower density but the bone structure may be strong. Osteoporosis can be over played, in some cases. My own doctor agreed with this and she has patients that have horrible DEXA scores and have never broken bones. My bone density will not be the same as someone who is physically larger than me. But that doesn't mean my bones are less strong. Doctors fail to mention this to some and pressure them to take meds that do not do what they claim. My doc did not want me to go on biophosphonates because of long bone fractures that can occur with them. They can actually weaken bone.

I had an x-ray done at the chiropractors last year when I injured my hip to see what the cause could be. It showed the whole lower portion of my spine. He looked at me and said my spine looked great.......vertebrae looked solid and the discs were well spaced and no sign of any degenerative disease. He also remarked that my bone density did not look bad at all...he questioned the DEXA scan results. I asked another doctor I have if bone density could be judged well from a plain x-Ray and he said yes. If you are at the point where they are telling you that you have osteoporosis, that will be visible on an x-ray. DEXA scans are a one size fits all test method and it just doesn't work like that. I think if I continue doing weight training for the rest of my life, having the muscles I have now and the benefits to bone should help a lot. There aren't a ton of options for building more bone if you don't weigh a lot and I just am not going to obsess about it. I don't do meds and hormone therapy did nothing. I am too far on the other side of menopause to use that safely.

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:lol: pole fence...it was pole fencing, wise guy! lol  It was buried in snow and running low on the ground.about 1 foot high...guy put it there so kids would not ride their bikes on his lawn.....slipped on the ice, went down thinking" Oh I'm all right, it's a big pile of fluffy snow going to cushion my fall... nope...pole broke 3 ribs....ugh

Oh, man.......that's gotta hurt!!!!!!!!!!!!!

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I agree with Gem on this issue. My DEXA may have shown some osteopenia, but despite some disc degeneration from OA (cervical spine area) my spine 

(according to a  spine specialist at Albany Med and anyone else who has seen my MRIs)

 I have the spine of a 22 year old.  If only  I FELT like a 22 year old...

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