Osteopenia/osteoporosis And Celiac Disease?

[Claudia]

hi everyone. first post for me. not a happy one.

anyone else out there dealing with a diagnosis of spinal osteopenia, almost osteoporosis? i am 53 so i know that a big part of this happening is just being postmenopausal ..and having celiac disease that was not diagnosed until i was 48. guess i missed alot of calcium absorption all along. anyway...i had a base line bone density test four years ago, at which point all was well; two years ago my T score, which i dont fully understand yet, was in the "mildly osteopenic" range; now it is "severely osteopenic". keep inmind this is in ONE VERTEBRA ONLY...L1. i have tons of other autoimmune disorders and chronic pain...all of that i have been living with and dealing with for 25 years....it just gets worse as you age. yippee.

so............just looking for anyone else around my age who has the ostoporosis stuff going on. and what do you do about it? i can't believe my rheumatologist (who i started seeing five years ago too, when diagnosed with spondyloarthropathy)is not suggesting that i start taking Actonel or Fosamax...i know women who are taking those drugs as preventative medicine!! i would think that someone like me would be a perfect candidate for it. but what do i know? i'm jsut the patient.

hope to hear back from someone.

[Emme999]

Hey there

I'm only 32, but I have osteoporosis and osteopenia also. That's actually what led to my diagnosis.

How long have you been strictly gluten-free? I asked my doctor if I should be taking some sort of medication to strengthen my bones and he explained that there is typically a significant remineralization after a strict gluten-free diet for 1-2 years.

But - if you have been gluten-free for a long time and have seen no improvement, I think you need to either see a new doctor or make it very clear that you feel that you need additional medical help (prescription) for your bones.

Osteoporosis is scary and dangerous. Make sure that you have a doctor who isn't willing to allow you to grow frail.

Wishing you the best,

- Michelle

[Nevadan]

I am a 60 yr old male diagnosed with osteophorosis 5 yrs ago after my much older brother was diagnosed. (Subsequently his son has also been diagnosed at about 50 yrs old so it appears genetic.) I take fosamax routinely. My osteo was how I got to relalize I might be gluten sensitive: after reading an article that stated that all celiacs should have a bone density test, I decided that the inverse also made sense. After researching celiac I discovered that I had a few other relevant symptoms (bloat, gas, cronic constipation), so I self diagnosed by going gluten-free and voila my symptoms disappeared after only 48 hrs. I did three gluten challenges afterwards (I'm a slow learner :-) ) and each time the sypmptoms returned.

After about a month of gluten-free I was tested by Enterolab and found to be sensitive to gluten, not suffering from malabsorption, and not having the celiac genes DQ2 or DQ8; however, I have a gene DQ1 which makes me sensitive to gluten's other effects. After some research I'm not sure but what the DQ1 may be worse than the celiac genes since it correlates with some pretty nasty neurological problems if untreated and has fewer short-term symptoms.

The Enterolab result doesn't explain my osteo; however, I wouldn't be surprised if it turns out after more research that gluten sensitivity without celiac (intestinal damage) doesn't somehow block the absorption of calcium in a way that doesn't show up on the Enterolab malabsorption test.

Since osteo is such a slow reacting disease, I'm not sure if I want to stop the Fosamax and wait for further bone density testing to see if being gluten-free really helps the osteo.

Meanwhile, the other benefits to me of being gluten-free far outweigh the hassles (which I find to be minimal), so I plan to be gluten-free from now on.

Re being "just the patient": don't forget for a minute that the doctor works for you so feel free to ask about treatment for osteo.

Hope this somehow helps.

George