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
Wolicki
Posted

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
Skylark
Posted

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

bluebonnet Explorer
bluebonnet
Posted

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

bincongo Contributor
bincongo
Posted

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
Wolicki
Posted
  • Author

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

Gemini Experienced
Gemini
Posted

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
tarnalberry
Posted

Congrats!!!

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted
  • Author

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
sb2178
Posted

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
Gemini
Posted

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
Gemini
Posted

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
jackay
Posted

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
MelindaLee
Posted

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

Wolicki Enthusiast
Wolicki
Posted
  • Author

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
Wolicki
Posted
  • Author

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
bluebonnet
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.