Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Osteoporosis


Wolicki

Recommended Posts

Wolicki Enthusiast

Hi All,

I got some good news today, and thought I would share! I was diagnosed with Osteoporosis and Osteopenia long before I was diagnosed with Celiac. For about 8 years, I have had annual bone scans and annual Reclast injections, only to learn it was getting worse.

I have been gluten free for a bit over a year. I've been taking my calcium, Vitamin D and exercising. I had my annual bone scan two weeks ago. The doctor called today and said "Your bone scan shows DRAMATIC improvement in all bones."

YAY!

So, the diet does work, and the damage can be undone! I've been feeling really great for about 5 months now. Even my doctor was somewhat shocked with what an amazing recovery I have had. I look and feel like a whole new person!

Just sharing my joy :D

Janie


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Thanks for posting that! It's very encouraging news.

bluebonnet Explorer

that is EXTREMELY encouraging news! so happy for you!!! :) what calcium supplement do you take?

bincongo Contributor

That is encouraging news. I am hoping for the same thing. I am new to the diet but my bone scans weren't getting any better in spite of taking calcum and Boniva. My GI doctor who found my Celiac said that my back pain will probably go away too. I hope many of us Celiac's can look at the positive side of things.

Wolicki Enthusiast

Caltrate + D twice a day, and 4000 IU daily of vitamin D :)

Gemini Experienced

Hi All,

I got some good news today, and thought I would share! I was diagnosed with Osteoporosis and Osteopenia long before I was diagnosed with Celiac. For about 8 years, I have had annual bone scans and annual Reclast injections, only to learn it was getting worse.

I have been gluten free for a bit over a year. I've been taking my calcium, Vitamin D and exercising. I had my annual bone scan two weeks ago. The doctor called today and said "Your bone scan shows DRAMATIC improvement in all bones."

YAY!

So, the diet does work, and the damage can be undone! I've been feeling really great for about 5 months now. Even my doctor was somewhat shocked with what an amazing recovery I have had. I look and feel like a whole new person!

Just sharing my joy :D

Janie

May I ask whether or not you are post-menopausal? I also have osteoporosis in my spine and osteopenia in my hips. I have never taken any bone meds because I chose not to after doing some research on them.....interesting that you were given injections of Reclast yet still your bone density did not improve. That bypasses the gut so it goes to show how poorly these meds work.

I am so encouraged and thrilled you have had these results! I started doing very serious weight training with a personal trainer in June and if this doesn't work for me, I am out of options. I am praying that I have the same experience that you have had. I was just taking calcium, magnesium and lots of Vit.D but that wasn't enough. I do hike and walk a lot so that prevented my hips from getting to full blown osteoporosis but the spine was another matter. I am 5 1/2 years post gluten free and everything has gotten better except the bones....I am also post-menopausal so I hope all is not lost for me!

Good work and I'm glad you've had such fantastic results. :D

tarnalberry Community Regular

Congrats!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

I am 44, and not menopausal. I took reclast for many years, but I was so very sick from the celiac, I don't think it would have worked even though it bypasses the GI tract. I was a skeleton trying to get through every day prior to diagnosis.

I did chat with my doctor about it. He's a DO, and is "drug resistant" :D However, he is very comfortable with Reclast because of the few side effects and its ability to actually rebuild bone. It's painless, too, it just takes a while because it is administered by IV.

sb2178 Enthusiast

Yay! From what I've read, gluten-free diet generally means young celiac patients regain a good bit of lost bone density. Not much to read on older patients...

Anyway, i'm also hoping to have a scan next year and discover that the weirdly elevated rate of loss is now either zero or positive.

Gemini Experienced

Yay! From what I've read, gluten-free diet generally means young celiac patients regain a good bit of lost bone density. Not much to read on older patients...

Anyway, i'm also hoping to have a scan next year and discover that the weirdly elevated rate of loss is now either zero or positive.

I truly know you meant nothing by your statement about "older" patients......it's just that at 51, I went through early menopause at 45, which is common for Celiac's. I feel so much better than I did at thirty that I literally cringe when I hear people refer to me as older! :lol::P I guess I am but I am actually now in better shape than most of the younger gals at work so have that

"Who? Me?" thing going when it comes to aging. Maybe someday I'll get used to it! :blink:

Gemini Experienced

I am 44, and not menopausal. I took reclast for many years, but I was so very sick from the celiac, I don't think it would have worked even though it bypasses the GI tract. I was a skeleton trying to get through every day prior to diagnosis.

I did chat with my doctor about it. He's a DO, and is "drug resistant" :D However, he is very comfortable with Reclast because of the few side effects and its ability to actually rebuild bone. It's painless, too, it just takes a while because it is administered by IV.

I think the reason many older women don't have much to go on when it comes to bone density is that many don't put as much effort into it as I am right now. They are steered into meds and have a hard time with the exercise that's required. This weight training stuff is great in how it makes you feel but it is literally the hardest work-out I have ever done in my entire life. I am starting lower than many of the women as I am trying to build muscle and bone. My muscles were atrophied at diagnosis and had no tone, plus the bone thing...... :o I am getting stronger but it is taking me longer than many in the class. They didn't start out as malnourished.

I am hesitant to use any bone meds as I have a lot of dental work to be done and that will be an on going project. I am having an implant done in October and I am just too afraid about the jaw problems that could occur with using Reclast and the like.

With my luck, I'll develop a problem and it cannot be fixed. This is why I am killing myself in the gym right now and it had better work! I am extremely curious as to see whether or not we older ladies can build bone like the youngun's! :lol: I am told by doctors that we can, it just takes more effort. Well...I'm doing that so I am hoping for bones by Christmas....at least some improvement!

jackay Enthusiast

Hi All,

I got some good news today, and thought I would share! I was diagnosed with Osteoporosis and Osteopenia long before I was diagnosed with Celiac. For about 8 years, I have had annual bone scans and annual Reclast injections, only to learn it was getting worse.

I have been gluten free for a bit over a year. I've been taking my calcium, Vitamin D and exercising. I had my annual bone scan two weeks ago. The doctor called today and said "Your bone scan shows DRAMATIC improvement in all bones."

YAY!

So, the diet does work, and the damage can be undone! I've been feeling really great for about 5 months now. Even my doctor was somewhat shocked with what an amazing recovery I have had. I look and feel like a whole new person!

Just sharing my joy :D

Janie

Tha is great news!

I was told that my osteopenia would reverse after having surgery for hyperparathyroidism. I haven't had a scan since my surgery 16 months ago. Guess I'll have to see if my DO will order a scan.

I'm still taking close to 2000 mg. of calcium citrate, 4000 IU Vitamin D3 daily along with magnesium glycinate. I'd love to be able to cut down on the calcium. I do better with calcium citrate than with calcium carbonate.

MelindaLee Contributor

Great news! It's always so nice to hear about the benefits of having to follow a strict diet.

Wolicki Enthusiast

I truly know you meant nothing by your statement about "older" patients......it's just that at 51, I went through early menopause at 45, which is common for Celiac's. I feel so much better than I did at thirty that I literally cringe when I hear people refer to me as older! :lol::P I guess I am but I am actually now in better shape than most of the younger gals at work so have that

"Who? Me?" thing going when it comes to aging. Maybe someday I'll get used to it! :blink:

Gemini, I am with you. Although I am 44, I felt 100 for years. I honestly feel better and younger than I did at 20, thanks to the diet. Well, er, except for my right hip that is :P

Wolicki Enthusiast

I think the reason many older women don't have much to go on when it comes to bone density is that many don't put as much effort into it as I am right now. They are steered into meds and have a hard time with the exercise that's required. This weight training stuff is great in how it makes you feel but it is literally the hardest work-out I have ever done in my entire life. I am starting lower than many of the women as I am trying to build muscle and bone. My muscles were atrophied at diagnosis and had no tone, plus the bone thing...... :o I am getting stronger but it is taking me longer than many in the class. They didn't start out as malnourished.

I am hesitant to use any bone meds as I have a lot of dental work to be done and that will be an on going project. I am having an implant done in October and I am just too afraid about the jaw problems that could occur with using Reclast and the like.

With my luck, I'll develop a problem and it cannot be fixed. This is why I am killing myself in the gym right now and it had better work! I am extremely curious as to see whether or not we older ladies can build bone like the youngun's! :lol: I am told by doctors that we can, it just takes more effort. Well...I'm doing that so I am hoping for bones by Christmas....at least some improvement!

I am going to give a big shout out to Curves. I've been working out there daily. Their routine is resistance machines, that you can make more difficult based on your effort each time. Yeah, starting out malnourished like we all were means a lower bar at the beginning, but you'll get there! I went for my one year checkup with my DO a few weeks ago and he was "thrilled, astonished, ecstatic" about the progress I have made and what a great "rule follower" I have become. Who woulda thought? :)

bluebonnet Explorer

Caltrate + D twice a day, and 4000 IU daily of vitamin D :)

thanks ... i'll check it out. :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.