Gluten Sensitivity/cd And Osteo

[Nevadan]

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

[Claire]

  Nevadan said:

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

[BGIG]

  Claire said:

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]

  BGIG said:

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