8 replies to this topic

[quincy]

Just had my check up at the Celiac Disease Center at Columbia University. I started with a bone scan after a year and a half wait since last one.

Unfortunately, my gluten free diligence, supplements, and organic whole foods diet, and exercise has not improved some of my density readings, specifically at the right hip.

My GI wants me to see an Endo with bone specialty.

has anyone had similar difficulty in improving bmd? I don't know if I am eligible for Forteo as I don't think I am at the point of fracture, but I am only 51 and don't want it to get worse or stay the same as it is. My T score for the neck of the right hip is -2.5

thanks for any feedback from those fellow sufferers.

[Gemini]

Hi Quincy.....I have not had a repeat bone density since my last one in 2011. Not in any hurry as it does take longer to build
bone in us 50 somethings than it does for the younger crowd. I am 53 and female. I have osteopenia in the hip and osteoporosis in the spine but am hoping that has changed for the better. I also take supplements and work out weight training in the gym twice a week. Can't do any more than that and I don't take any bone drugs as I want to see if what I do helps.

I am sorry things aren't improving yet for you but hang in there....it just might take longer than you think. I am interested to hear what the referral doc will have to say about it.

[Opa3]

..........but I am only 51 and don't want it to get worse or stay the same as it is. My T score for the neck of the right hip is -2.5

I'm a male/ 68 and yet to have a bone scan. I notice when I jog that my left hip begins to hurt after about 5 minutes. The right is OK. The pain comes and goes throughout a 30 minute walk/jog treadmill workout. What symptoms does a T- score of -2.5 have? Am I starting osteopenia myself?

Until I can get a scan, I'll err on the side of caution.

[quincy]

I'm a male/ 68 and yet to have a bone scan. I notice when I jog that my left hip begins to hurt after about 5 minutes. The right is OK. The pain comes and goes throughout a 30 minute walk/jog treadmill workout. What symptoms does a T- score of -2.5 have? Am I starting osteopenia myself?

Until I can get a scan, I'll err on the side of caution.

Hi Opa,

The first test I had after my diagnosis was a bone density scan. I was surprised because I always worked out and felt strong. I was shocked to find out I had osteopenia. My first symptoms leading up to a diagnosis was pain in my right hip.

a score of -2.5 is borderline osteoporosis, so if my score was -2.6, for example, I would officially have osteoporosis for that particular bone, in my case the neck of the hip bone.

I would strongly advise that you speak to your doctor, or perhaps an endocrinologist, to have a bone scan done, though I don't know your diagnosis as celiac or gluten sensitivity.

[Opa3]

.................... though I don't know your diagnosis as celiac or gluten sensitivity.

Celiac for 30 years.

"Hear instruction, and be wise, and refuse it not." I definately will see a Doc. Thanks for posting this topic.

[quincy]

Celiac for 30 years.

"Hear instruction, and be wise, and refuse it not." I definately will see a Doc. Thanks for posting this topic.

Opa3,

keep in mind, I went undiagnosed for probably most of my life, so the osteopenia was the result of malabsorption. You have been gluten free
for many years, so it would have to be assumed that you have healed and been absorbing calcium and vit D properly during that time. You
may be having muscle pain in the area.

[georgie]

It might be an idea to check your Vitamin D, Calcium, Ionised Calcium and PTH ( several times ) - in case you have a Parathyroid adenoma causing the bone loss. Most Drs don't get Hyperparathyroidism at all - they still think it is a rare disease.. If they kept up to date they would find the stats are 1 in 250 woman over the age of 50 have HPT... which I would not call rare - would you ? Only one cure and chance to reverse the bone loss of HPT and that is surgery.

[frieze]

Vitamin D level? Check that out before going over board on the Ca++.

[Opa3]

Finally, got a bone scan.

 

I was Dx'ed with osteoporous of the lumbar spine (T-2.7), osteopenia of the left hip (T-1.7) and Femoral Neck (T-2.3).

Vit D was normal at 41.0 (range:30.0-100.0). The other bone nutrients calcium (serum=9.7) and albumin (serum=4.5) were normal. However, I still need to determine if an imbalance of phosphorous and PTH exist.

 

My PCP Rx'ed generic Fosamax, 70 mg, 1 tab/week. I opted to take Country Life's Calcium (1000mg)/Magnesium(500mg)/Phosphorus(500mg).  These Target-Mins are CGF.

Also, to boost Vit D level, I'm taking 1000 IU, 1 tab/daily.

 

Only time will tell if this treatment improves T values for me.