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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748
    Dizzyma
    Newest Member
    Dizzyma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.