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

Gluten Sensitivity/cd And Osteo

Nevadan

By Nevadan
in Related Issues & Disorders

Recommended Posts

Nevadan Contributor
Nevadan
Posted

I've noticed quite a few of us have osteoporosis/osteopenia issues, Claire, Gina, cmom, WRowland, and myself to name a few. It would be interesting and helpful to hear about others' experience with osteo problems and the reaction to being gluten-free. Any good success stories? What have others done in addition to being gluten-free?

My initial intro to gluten sensitivity was by reading an article describing the strong relationship between celiac disease and osteoporosis which I was dx'ed with 5 yrs ago at 55 yrs old after my older brother was also dx'ed with osteo. After researching celiac disease I found some moderate gastro symptoms I had might be related to gluten, so I decided to try the gluten-free diet. I was really impressed when the gluten-free diet resolved the gastro symptoms within 48 hrs. The response of the gastro stuff really got my attention with respect to gluten, so I decided to continue in hopes of finding the root cause of the osteo.

I was subsequently tested by Enterolab which confirmed gluten sensitivity but no malabsorption. They also found I have a pair of DQ1 genes.

I've been gluten-free since June (CF since July). I also have had mild anemia all my life and am planning to use this as another measure of the effectiveness of the gluten-free diet for me - I will remeasure it after 6 mo gluten-free. Unfortunately the osteo is such a slow moving disease it's going to be harder to relate to gluten, but I hope to anyway - it will just take longer.

What's your experience?

George

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

Celiac.com Sponsor (A8-M):


Claire Collaborator
Claire
Posted
I've been gluten-free since June (CF since July). I also have had mild anemia all my life and am planning to use this as another measure of the effectiveness of the gluten-free diet for me - I will remeasure it after 6 mo gluten-free. Unfortunately the osteo is such a slow moving disease it's going to be harder to relate to gluten, but I hope to anyway - it will just take longer.

What's your experience?

George

<{POST_SNAPBACK}>

I opened a new topic tonight on osteo - invited experiences, questions, tips etc. Your idea - come aboard. Topic is titled Osteoporosis Anyone? Claire

  • 1 month later...
BGIG Apprentice
BGIG
Posted
I opened a new topic tonight on osteo - invited experiences, questions, tips etc. Your idea - come aboard. Topic is titled Osteoporosis Anyone? Claire

Claire, I received a call today from one of our members (I am the Team Support Leader for Bellingham Gluten Intolerance Group). His wife is a diagnosed celiac (approx. 1 year ago, has been gluten-free since). She also suffers from severe osteoporosis (I would guess her age to be about 75). She has tried Fosamax with really negative results - intestinal reaction as though she had eaten gluten. She was advised by manufacturer that "folks with celiac disease shouldn't take Fosamax" until the gut is entirely healed. Her MD recently suggested she try "beneva" which is "like Fosamax" except that you take it once a month. Her reaction was again severe and she is still sick two weeks later !

Does anyone out there have any ideas on what medication a person can take to improve osteoporosis - other than the conventional "good diet", calcium/Vit.D supplements, etc. she is already doing that but her quality of life is quickly slipping away . . .

thanks.

Nevadan Contributor
Nevadan
Posted
  • Author
Does anyone out there have any ideas on what medication a person can take to improve osteoporosis - other than the conventional "good diet", calcium/Vit.D supplements, etc. she is already doing that but her quality of life is quickly slipping away . . .

thanks.

I was dx'ed with osteoporosis at 55 (male). My doctor initially prescribed Calcitonin which I took for a year and showed about 5% improvement. Subsequently my doctor switched me to Fosamax looking for a better improvement. For the next three yrs on Fosamax my bone density remained essentially unchanged. You might want to discuss Calcitonin with her doctor.

I am gluten sensitive, but probably not celiac (don't have the celiac disease genes), and have had no problem with Fosamax (except that it doesn't seem to work very well for me).

George

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,810
    • Most Online (within 30 mins)
      7,748
    Becky103
    Newest Member
    Becky103
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Royal Caribbean Only, Please

      By AuntieAutoimmune · Posted

      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By Scott Adams · Posted

      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      Gluten free/ non dairy , low calorie pudding

      By Scott Adams · Posted

      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      Royal Caribbean Only, Please

      By DebJ14 · Posted

      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...