Repeat dexa scan - coeliac disease

[Endo8701]

Hi Coeliac friends,

I've been 11yrs diagnosed with Coeliac Disease. I had a dexa scan when I was first diagnosed. I had a low bone density and was put on calcium tablets for a number of months (can't remember how many) are you supposed to get a repeat dexa scan after so many years?

Just wondering? As I had my recent Coeliac check up (full bloods) in December 24 and it came back that I was vitamin D deficient.

I've never been Vitamin D deficient in all these years?? I've read online that maybe I could have a dexa scan to check? My doc said my results were really low? I've been on a strong dose of vitamins for months now. I'm a bit better but not 100%. But diagnosed with Vit D, just was feeling really ill. Nausea, loss of appetite, fatigue, achy muscles and joints etc, low mood. All the usual symptoms.

Has anyone had a Vit D deficiency who's got Coeliac disease? And has anyone had repeat dexa scan?

Many thanks

[Regalbirdy]

Hi,

By your spelling of ‘Coeliac Disease’, I’m going to presume that you’re likely to be UK based - therefore my information will reflect that.

If there are/have been any concerns about your bone density (or you’re having other related issues), I believe you’re entitled to have a Dexter scan every 2 to 3 years on the NHS - at least that’s what I’ve received.

In 2013, I was borderline severely vitamin D deficient, so I can honestly say I can relate to how you’re feeling. It wasn’t great! From my own experiences, I suggest that blood results in the region of 60-100 nmol/l is around the optimal level for vitamin D. I worried my endocrinologist by going above 100 - oops! That’s not to be recommended because it’s a fat soluble vitamin, so cannot be excreted in the same way as many other vitamins; and could cause toxicity/other problems in the body.

If you’ve just had routine bloods done, then you’ll be aware of your B12 result? I only mention it because that can also make you feel pretty rubbish.

The other one to watch, especially if you are having bone density issues is your magnesium levels, because low magnesium is thought to be a risk factor for osteoporosis.

If you’re the type of person who likes delving into guidelines, NG 20 are the NICE guidelines related to Coeliac disease.

Good luck figuring things out.

P.s thanks for the reminder - I need to check when my own Coeliac review is due!

[TommyG35]

I was told every three years for a dexa scan, though I believe the guidelines may differ. For CD, are you under the care of your GP or a consultant? Initially I was under a consultant and all was fine, but after I was passed back to my GP the issues started.I don't think many GPS understand CD, I just contact them every three years and they arrange a scan