Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Bone Density Scan Results...


love2travel

Recommended Posts

love2travel Mentor

...were perfect today! That means I am absorbing. YAY! :) To this day I cannot tell whether I have been accidentally glutened (I know I was once in the last six months but didn't feel different at all) so these results show I am at least heading in the right direction!


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



Celiac.com Sponsor (A8-M):



Newbee Contributor

That's great! Did you have osteoperosis or osteopenia or was this your first scan? I have osteopenia and am hoping I can reverse it with gluten free diet, exercise, and vitamins.

T.H. Community Regular

Oh congratulations! I know it's been so hard when you couldn't tell at all whether your body got glutened or not. Awesome that your care with the diet is paying off!

love2travel Mentor

That's great! Did you have osteoperosis or osteopenia or was this your first scan? I have osteopenia and am hoping I can reverse it with gluten free diet, exercise, and vitamins.

This was my first scan so I could have had healthy bones all along BUT I choose to believe (hee hee!) that it is due to being gluten-free. It could very well be! Because of my crazy old back injury and fibromyalgia I truly did not want to have to deal with something else!

I really hope that you are able to reverse the osteopenia. When do you have your scan?

love2travel Mentor

Oh congratulations! I know it's been so hard when you couldn't tell at all whether your body got glutened or not. Awesome that your care with the diet is paying off!

Thanks, Shauna. You're right - it can be difficult knowing how to measure the whole gluten thing if you do not obviously react. As I have read about so many people who react far more severely once being gluten-free for several months and longer I am not exactly eager to try to find out! So I am as strict as can be. :) I know I have neurological issues but I cannot associate any specific foods with any pain. I really, really hope that I will see an improvement in my icky insomnia.

But any news like this is worth smiling about! :D

Newbee Contributor

I won't have another bone scan until next year. Last year I had an early dexa scan (I was 35) and was surprised to find I had osteopenia (almost to osteoporosis levels). It was what made me ask for a celiac disease blood test. I'd heard celiac can cause that. Unfortunately it can :(

I've heard people's bone density can go up 15 or 18 % in the first year of being gluten free. After that the increase is not supposed to be as dramatic.

AVR1962 Collaborator

How long did it take to gain your bone mass? Were you taking additional calcium and vit D supplements? My scan also showed a loss and am curious when I should retest.


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

How long did it take to gain your bone mass? Were you taking additional calcium and vit D supplements? My scan also showed a loss and am curious when I should retest.

Unfortunately as this was my first bone scan I did not have a baseline established but I am SO curious about whether my going gluten-free helped or not. I like to think it did (mainly because I did not have obvious glutening symptoms when I was on my three-month gluten challenge so I am looking for some positive changes!). I am not lactose intolerant (although I avoided it my first few months gluten-free) and eat TONS of cheese, drink lots of milk and take Calcium supplements.

How often must one go for bone density scans? The technician told me to return "in a few years".

Gemini Experienced

I won't have another bone scan until next year. Last year I had an early dexa scan (I was 35) and was surprised to find I had osteopenia (almost to osteoporosis levels). It was what made me ask for a celiac disease blood test. I'd heard celiac can cause that. Unfortunately it can :(

I've heard people's bone density can go up 15 or 18 % in the first year of being gluten free. After that the increase is not supposed to be as dramatic.

I had the same results as you did but I was older (51) and it had progressed to osteoporosis in the lumbar region of my spine. I was also post-menopausal

by 6 years. I few things I have learned....you will probably have better luck gaining bone density if you have not gone through menopause because estrogen plays a role in bone formation. Also, a woman must weigh at least 126 pounds for most of her adult life to generate bone without doing anything else other than the exercise you get from walking around. For men, that number is 150 pounds. I think the percentage you quoted for density gain would be those in the younger phase of their life who weigh more. I weigh 113 pounds soaking wet and will never be in the 126 region so I joined a gym and work with a personal trainer to try and build bone. I refuse to take meds because they do not work as advertised and they can cause many other serious problems. I have enough other problems and do not wish to add any more to the list. The work-outs are very hard but that's what it will take to accomplish my goal....or so the trainer says! ;) I won't know for another 2 years what the results will be because I do not go for yearly physicals and will have to wait to be re-tested. I believe it will be fine because I have gained muscle and strength like I have never had before. I was the skinny, wasted away Celiac. I figure if my bones don't make a dramatic enough recovery, at least my muscles will be strong to hold things in place! :lol:

anna34 Enthusiast

love2travel - That's terrific news! I want to ask you, how did you go about getting a bone density scan done? I went on the diet in March based on borderline blood and my daughter's positive biopsy. I KNOW that the diet has made a huge difference in my quality of life, but I'm in my mid-thirties and wondering - If I truly do have celiac, should I be getting a bone density scan? Looking back, I had been having all of my symptoms since at least my teen years, so there's potential for damage I suppose. Did you just ask your family doctor? My doctor doesn't know as much as I do about celiac and may tell me that it's not necessary, but should I push for it - in your opinion. I welcome others' thoughts on this too. Thanks!

love2travel Mentor

love2travel - That's terrific news! I want to ask you, how did you go about getting a bone density scan done? I went on the diet in March based on borderline blood and my daughter's positive biopsy. I KNOW that the diet has made a huge difference in my quality of life, but I'm in my mid-thirties and wondering - If I truly do have celiac, should I be getting a bone density scan? Looking back, I had been having all of my symptoms since at least my teen years, so there's potential for damage I suppose. Did you just ask your family doctor? My doctor doesn't know as much as I do about celiac and may tell me that it's not necessary, but should I push for it - in your opinion. I welcome others' thoughts on this too. Thanks!

Thanks! I'm pleased because I was expecting the scan to show some loss and it was perfect! I am nearing middle age and my dietitian said I MUST have a bone density scan done (she is knowledgable about celiac disease and is a huge advocate here in our community) so when I saw my doctor this week I simply requested one. He said, "That is a good idea." That leads me to believe he would not have brought it up himself. In Canada it is covered.

The procedure only takes about 15 minutes. I asked the technician tons of questions so following the scan she beckoned me over to the monitor and showed me what my bones looked like and how/where the scan was measured. She also told me the results charted on a graph. (I am to act surprised when my doctor goes over results with me. :D )

However, I am nervous about my bloodwork (getting it done today) as last time my cholesterol was borderline high (thanks, Mom! :huh: ). I am very curious about my vitamin levels as I have been taking supplements. I am also curious about my celiac panel as I have been rigidly strict.

Hopefully you are able to have the scan without any questions! I am glad I did. As I mentioned above I really am not seeing much for improvement or signs as I did not have obvious symptoms when on gluten so it is nice to know I am on the right path.

anna34 Enthusiast

Thanks! I'm in Canada too, so I'll just tell my doctor that I should have this done. ;)

Again, glad to hear things went well for you.

cyberprof Enthusiast

loves2travel, good news. Happy for you.

I had my first scan at age 48 just after diagnosis. I'd recently gone through menopause (boom...done with no symptoms at 47 due to celiac, most likely) and was diagnosed with osteopenia. I just had a new one done four years later and it showed significant improvement. Yay! I, unfortunately, have always been overweight plus I've lifted weights regularly since my late 20s, so I never expected to get osteoporosis.

After diagnosis, I started being more regular with calcium and Vit D supplements (calcium by itself won't work) and kept up with the workouts (walking and weights).

I am glad it's reversing or at least not getting worse because the drugs to "cure" this are worse than the disease and I hope never to take them.

Gemini Experienced

loves2travel, good news. Happy for you.

I had my first scan at age 48 just after diagnosis. I'd recently gone through menopause (boom...done with no symptoms at 47 due to celiac, most likely) and was diagnosed with osteopenia. I just had a new one done four years later and it showed significant improvement. Yay! I, unfortunately, have always been overweight plus I've lifted weights regularly since my late 20s, so I never expected to get osteoporosis.

After diagnosis, I started being more regular with calcium and Vit D supplements (calcium by itself won't work) and kept up with the workouts (walking and weights).

I am glad it's reversing or at least not getting worse because the drugs to "cure" this are worse than the disease and I hope never to take them.

It's nice to hear that the post-menopausal crowd can reverse osteopenia/osteoporosis too! I had little doubt it was possible if you put the work into it.

Gemini Experienced

Thanks! I'm pleased because I was expecting the scan to show some loss and it was perfect! I am nearing middle age and my dietitian said I MUST have a bone density scan done (she is knowledgable about celiac disease and is a huge advocate here in our community) so when I saw my doctor this week I simply requested one. He said, "That is a good idea." That leads me to believe he would not have brought it up himself. In Canada it is covered.

Bone density scans are also covered in the US. I think that's pretty much the norm for most countries. All I had to do was tell the doctor I wanted one and it happened. No one should be refused if they have reason to believe their density might be compromised. It can happen easily enough without having Celiac Disease.

AVR1962 Collaborator

I refuse to take meds because they do not work as advertised and they can cause many other serious problems.

Good for you! Sounds like you are on your way, heading in a positive direction. I too am staying away for all meds. I have a friend who is a registered nurse who told me that the meds you can take will suuround the bones and keep the bones from losing any more calcium but a barrier is created that doesn not allow absorbtion.

Avoiding high acid foods can also help, there is plenty of info on the Internet if you do a search.

For me, I think my regular walks and gym time are what saved me from any more damage. You have to have the exercise to lay the calcium down in the bones.

Gemini Experienced

Good for you! Sounds like you are on your way, heading in a positive direction. I too am staying away for all meds. I have a friend who is a registered nurse who told me that the meds you can take will suuround the bones and keep the bones from losing any more calcium but a barrier is created that doesn not allow absorbtion.

Avoiding high acid foods can also help, there is plenty of info on the Internet if you do a search.

For me, I think my regular walks and gym time are what saved me from any more damage. You have to have the exercise to lay the calcium down in the bones.

Dentists will tell you the real story about those bone meds because they are ones to see the damage, not a doctor. I am having some dental implants done and you have to sign a waiver if you are taking bio-phosphonates.

The jaw necrosis that can be a side effect from them basically happens when bone stops breaking down, making way for new bone growth. (That is how they work.) So, your bones do physically get denser but because the old bone does not break down, the jaw bone gets larger and squeezes the small veins in the jaw. Circulation is decreased and the tissue starts to die. Yeah...sign me up for that! :o

Those exercise classes have additional benefits.....when you are having a stressful day, after leaving the gym you feel great.....both mentally and physically!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    2. - knitty kitty replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly Diagnosed

    3. - knitty kitty replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    4. - Rebeccaj replied to Rebeccaj's topic in Super Sensitive People
      4

      symptoms.

    5. - knitty kitty replied to CeliacPI's topic in Related Issues & Disorders
      8

      Lymphocytic Colitis with Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,518
    • Most Online (within 30 mins)
      7,748

    Lois S
    Newest Member
    Lois S
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
    • knitty kitty
      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
    • knitty kitty
      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
    • Rebeccaj
      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
    • knitty kitty
      Do discuss this recent article with your doctors.  Thiamine Vitamin B 1 is important to intestinal health.  Thiamine deficiency can occur in Celiac Disease due to malabsorption.  Supplementing with a B Complex, Benfotiamine, and Vitamin D can help symptoms.   Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/#:~:text=Our mechanistic study revealed that,necessary to protect against colitis. "Conclusion and implications: Our study provides evidence linking thiamine deficiency with proinflammatory macrophage activation and colitis aggravation, suggesting that monitoring thiamine status and adjusting thiamine intake is necessary to protect against colitis."
×
×
  • Create New...