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 Is Reversing!


mamasaidso

Recommended Posts

mamasaidso Apprentice

I was really fretting over getting results of recent Dexa scan. Thought for sure it would be bad as last two showed a steady decline in bone mass. But, after being gluten-free since January and being faithful about taking calcium and starting weight-bearing exercise my test showed no osteoporosis in spine. It was completely normal and the severe osteoporosis in hips has been reduced to osteopenia and made a big improvement. I am so relieved about this. For a time I took Actonel and saw no improvement. My doctor was steering me toward the treatment with daily injections for two years. I wanted to give myself a chance to heal and it seems to be working. I have researched like crazy these last eight months and hound my doctors about vitamin levels. Finally have a handle on what I need and taking steps to improve my health. Have been on cloud nine all week. More determined than ever to maintain this and keep working on the osteopenia.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Awesome!! :) Awesome!! :)

It gives me hope. I have not had a DEXA scan, but early last year at the dentist he said he saw bone loss of about 20% in my jaw. I am only 39, so this scared me. This was before going gluten-free. My teeth were a little loose in the lower front after I bit down on a fork accidentally. They werent tightening very well, but since gluten-free they are snug as a bug in a rug. I too am taking calcium PLUS all of the 17 necessary companion nutrients to Calcium and upped my exercise. I am due to go back to he dentist next month, so I am hopeful he sees improvement. :)

ArtGirl Enthusiast
Awesome!! :) Awesome!! :)

DITTO!

Good for you for taking your health into your own hands. The natural way is the best!

tarnalberry Community Regular

congratulations!!

Fiddle-Faddle Community Regular

Way to go!!!

I'm curious--did your doctor's jaw hit the floor? What did he (or she) SAY????

This is the sort of thing that can--and should--turn the whole pharmaceutical scam industry on its back, if doctors and the media would only REPORT these kinds of results!

mamasaidso Apprentice

I received my Dexa results via a PDF file. Didn't even have the experience of watching the look on her face. As far as she is concerned, she probably thinks the results are from medication from a prescription I never filled for Fosamax D. I thought about emailing her about it, but then thought, Nah. I'm not even sure she reviewed it or compared it to previous scans. With an office full of "assistants" and communications through "patient portals" I pretty much give up on the one to one experience with her. Kind've gives primary physician a new meaning. <_<

spunky Contributor

Congratulations on your good bones!

I've read that anyone with osteoporosis, even in the absence of other symptoms, should consider being tested for celiac.


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



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular
I received my Dexa results via a PDF file. Didn't even have the experience of watching the look on her face. As far as she is concerned, she probably thinks the results are from medication from a prescription I never filled for Fosamax D. I thought about emailing her about it, but then thought, Nah. I'm not even sure she reviewed it or compared it to previous scans. With an office full of "assistants" and communications through "patient portals" I pretty much give up on the one to one experience with her. Kind've gives primary physician a new meaning. <_<

You probably don't have a heckuva lot of spare time, but if you do, you might consider sending her a REGISTERED letter, telling her that

a) you never filled the Fosamax scrip

B) the results of both the previous scan and the latest one showing significant improvement

c) the fact that the only things that changed were diet and exercise, NOT meds

d) your belief that your osteoporosis was due to untreated celiac, and that you recommend that she test other patients with osteoporosis for celiac or gluten intolerance.

e) one or two studies from the internet showing the link

This puts a bit of pressure on her, you see. Since the letter is registered, it is proof that she received it, and that she now knows of the connection between celiac and osteoporosis.

If a future patient wants to sue her for not ruling out celiac, she won't be able to claim that she didn't know of the link, or that none of her other patients showed proof of recovery on a gluten-free diet.

Don't settle for that abysmal lack of communication! Leave the communications ball in her court--but do so with a registered letter, so that she knows just how important this is.

Archived

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

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.