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What doctor do I see now?
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celiacjill posted:
Hello,
I am a 32 year old athletic female with celiac sprue disease, Polycystic ovarian disease, GERD, and have suffered a hip ("stress") fracture in 2007 from running. I have had a recent DXA scan done which showed my left arm T-score to be at -2.6. (my other, non-fractured hip, and spine where within normal range.) My primary doc referred me to a rheumatologist who ordered more tests. My calcium, urine 24hr states a result of 78.3 which is considered Low. (My PTH and creatinine were normal, so we know there is no parathyroid issue.) So far my assessment is "idiopathic osteoporosis unknown cause". My rheumatologist has been trying to contact a specialist at Columbia to see me for a bone biopsy or ct scan, but has been unsuccessful. The only resolution I have right now from her is to take more calcium. (I have been taking 500mg/day since the hip surgery, but now I take 1000mg/day.) I have had no response from this rheumatologist for several weeks as to where to go from here. I feel like I have hit a dead end. Due to the lack of response from this doctor, I feel like I have to do my own research. Who do I see next? An endocrinologist?
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bonebabe responded:
Have you contacted the rheumatologist to follow up? You could do one of two things if you're not satisfied with the rheumatologist...see a gastroenterologist or look at the ISCD website (www.iscd.org ) to find an osteoporosis specialist in your area.

Have you gone through menopause? Treatment options are limited by your menopausal/childbearing status.

As for your calcium, when you take it, be sure to spread it out throughout the day as the body can only absorb 500-600 mg at a time. Your GERD and celiac hamper this too. Try a chewable calcium supplement like Viactive (WalMart has a generic). Also take a Vit D supplement - 1000 IU each day. This can be taken at any time.
 
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celiacjill replied to bonebabe's response:
Yes, I have contacted the rheumatlogist to follow up and they haven't got a clue since they were hoping the specialist at Columbia would guide them to the right direction.
No, I am 32 years old so I haven't gone through menopause. I have not had any children but would like to in the next couple of years.
I take 500 mg calcium after lunch, and then the other 500 mg after dinner. I prefer Target's brand "up & up", or Vitafusion adult gummy calcium. It also includes Vitamin D. (The Viactive has alot of garbage in it that is not necessary like hydrogenated oils.)
Thanks for the feedback bonebabe!
 
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bonebabe replied to celiacjill's response:
So then, you have low bone density, are premenopausal, have a malabsorption problem, have had a nontraumatic fracture and are a runner.

Lots of red flags. I do hope you can get some doctor to followup with testing to determine the cause of your low bone density. It may very well be that during your bone forming years, you didn't absorb enough calcium to reach your peak bone mass. It's not that you're losing, it's that you never gained. One scenario.

At this point, if I were you, I would research the ISCD and NOF websites (www.iscd.org and www.nof.org ) for all the information I could get. I would continue with the calcium and Vit D......and.....I would stop running. Running is a risky choice if the bone density is low. Power walking would be a better option.

It's possible, at your age, that you could still amass some bone density. Keep in mind that as you approach and go through menopause, you can lose up to 20% of what you have now. Also being pregnant and breast feeding will deplete you bone mass - at least temporarily.

Having had one fracture puts you at twice the risk of having another. I would ask my primary doc or orthopedic to order some physical therapy for body mechanics and ADL's (Activities of Daily Living) to reduce your chance of another fracture.

At this point, there's not much we know or can do about premenopausal osteoporosis unless there's an underlying cause that can be addressed. All you can do is what you're doing and not take chances.

I hope you find a good doctor, stay upright and healthy and have as many children as you want
 
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NATIONAL OSTEOPOROSIS FOUNDATION
Susan Randall, RN, FNP-BC, MSN responded:
The National Osteoporosis Foundation may be able to help you. Please call us at 1-800-231-4222 and ask to speak to a Health Education Specialist. The best time to call is between the hours of 9 am and 5 pm, EST, Monday through Friday.
 
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celiacjill replied to bonebabe's response:
Thank you for all of the great information.
I was blessed with the opportunity to see an amazing doctor and am finally getting the information that I need. Before, it seemed as if no one was willing to help me and really look into my history, but now I know that is not true.
Thanks again for your insight Bonebabe!


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