Coeliac & Osteoporosis
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Coeliac & Osteoporosis
by Cinders » Tue Dec 16, 2008 3:45 pm
I was recently diagnosed as being coeliac and my consultant sent me for a Dexa scan and lo & behold the scan showed I have Osteoporosis in my spine at a level of -3.5. I will be on medication and Calcichew D3 for rest of my life.
Does anyone else here have it and if so, should I be worried about it? Thank you.
Does anyone else here have it and if so, should I be worried about it? Thank you.
by AngelaL » Wed Dec 17, 2008 9:53 am
Hi Conders.
Really sorry to hear that you have osteoporosis. When I was diagnosed, nearly two years ago, my consultant also ordered the dexa and put me on Calcichew twice a day because my levels were borderline. I have to admit, I haven't been taking them as I should. I am now going to rework my schedules and get them in. I suppose I thought it wouldn't happen to me.
How long do you think you were symptomatic for CD before it was discovered?
Angela
Really sorry to hear that you have osteoporosis. When I was diagnosed, nearly two years ago, my consultant also ordered the dexa and put me on Calcichew twice a day because my levels were borderline. I have to admit, I haven't been taking them as I should. I am now going to rework my schedules and get them in. I suppose I thought it wouldn't happen to me.
How long do you think you were symptomatic for CD before it was discovered?
Angela
by Cinders » Wed Dec 17, 2008 10:45 am
Hi Angela. I have no idea how long I had the symptoms. Its been really bad since end of July (first day of holidays) but looking back over the years, every now and then I'd get a dodgy tummy especially after a rich meal but it would only last a day or two and I always had problems when on holiday but it cleared up when I got home. I think Osteoporosis is a side effect of Coeliac as my body hasnt been getting all its vitamins for god knows how long.
And, dont worry about the spelling. Guess What, its not my real name!!
And, dont worry about the spelling. Guess What, its not my real name!!
- irish_in_california
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by irish_in_california » Sun Dec 21, 2008 8:44 am
I too had a Dexa scan recently and it showed that I have osteopenia (which is the bone loss stage before osteoporosis). So I'm on Fosamax and calcium and Vitamin D now.
I'm definitely concerned and am trying to make sure I take the medication and the calcium as prescribed. I've probably had celiac disease for nearly 40 years, but was just diagnosed this year. The doctors always told me that I had "Irritable Bowel Syndrome" before.
Best wishes,
JoAnn
I'm definitely concerned and am trying to make sure I take the medication and the calcium as prescribed. I've probably had celiac disease for nearly 40 years, but was just diagnosed this year. The doctors always told me that I had "Irritable Bowel Syndrome" before.
Best wishes,
JoAnn
by BrianM » Thu Jan 01, 2009 9:31 pm
Hi
I am on Osteoporous medication for past 2 years, but I was only diagnosed with CD last year.
I take Fosavance once a week, Ideos chewable tablets twice daily, and a Dona satchel once daily.
I had a 2nd dexa scan last June, & my GP said results were not great. I am going for a 3rd Dexa scan next month.
The 2nd scan was in a different place to where I had the first. Both in north Dublin, but I better not mention names. My GP said that you can get different results from different equipment. My 3rd scan will be in the same place that I had the first
I am on Osteoporous medication for past 2 years, but I was only diagnosed with CD last year.
I take Fosavance once a week, Ideos chewable tablets twice daily, and a Dona satchel once daily.
I had a 2nd dexa scan last June, & my GP said results were not great. I am going for a 3rd Dexa scan next month.
The 2nd scan was in a different place to where I had the first. Both in north Dublin, but I better not mention names. My GP said that you can get different results from different equipment. My 3rd scan will be in the same place that I had the first
by Fiona1984 » Fri Jan 16, 2009 4:55 pm
irish_in_california wrote:I too had a Dexa scan recently and it showed that I have osteopenia (which is the bone loss stage before osteoporosis).
Best wishes,
JoAnn
Hi JoAnn,
I had a DEXA scan last year which showed I was in the Osteopenia bracket too. I have Crohn's disease aswell and I'm also on steroids which can reduce your calcium levels! Triple whammy
I'm on Calcichew D3 tablets and I take regular walks.
by hugh » Wed Aug 05, 2009 10:00 pm
Hi,
Reviving an old thread here but I think it's an important one.
I was diagnosed coeliac 4 years ago, but had no obvious symptoms other than some weight loss at the time. I think they assumed they caught me early, and I was never scheduled for a DEXA scan.
Over the last four years I met with three different dieticians that went through my diet with regard to the food pyramid. They were all happy that I had sufficient calcium etc in my diet so were not concerned. At the last visit I specifically requested that they schedule me for a DEXA. A few weeks later I had the scan and was immediately diagnosed with Osteopenia, and borderline Osteoporosis. You get the results of a DEXA scan straight after the scan.
It seems the key thing that was missing from my diet was Vitamin D. Without it you can take all the calcium in the world but it won't be absorbed. I was prescribed Osteofos D3, but after one sachet I was sick for three days! I changed over to Ideos chewable tablets which I tolerate fine. Both are a combined dose of calcium and vitamin D. They other key treatment is weight bearing exercise - walking. This is critical to build up bone density. I'll have another scan next year to see the results.
So - I wish I insisted on the scan when I was first diagnosed, rather than four years later. I feel a little young at 38 to have borderline Osteoporosis. But I'm pretty confident I can turn it around, or at least halt it now that I know. The reason for the post is to encourage anyone that hasn't had a DEXA scan to insist on having one done. It's completely painless - just an X-ray.
Reviving an old thread here but I think it's an important one.
I was diagnosed coeliac 4 years ago, but had no obvious symptoms other than some weight loss at the time. I think they assumed they caught me early, and I was never scheduled for a DEXA scan.
Over the last four years I met with three different dieticians that went through my diet with regard to the food pyramid. They were all happy that I had sufficient calcium etc in my diet so were not concerned. At the last visit I specifically requested that they schedule me for a DEXA. A few weeks later I had the scan and was immediately diagnosed with Osteopenia, and borderline Osteoporosis. You get the results of a DEXA scan straight after the scan.
It seems the key thing that was missing from my diet was Vitamin D. Without it you can take all the calcium in the world but it won't be absorbed. I was prescribed Osteofos D3, but after one sachet I was sick for three days! I changed over to Ideos chewable tablets which I tolerate fine. Both are a combined dose of calcium and vitamin D. They other key treatment is weight bearing exercise - walking. This is critical to build up bone density. I'll have another scan next year to see the results.
So - I wish I insisted on the scan when I was first diagnosed, rather than four years later. I feel a little young at 38 to have borderline Osteoporosis. But I'm pretty confident I can turn it around, or at least halt it now that I know. The reason for the post is to encourage anyone that hasn't had a DEXA scan to insist on having one done. It's completely painless - just an X-ray.
by jess » Thu Aug 06, 2009 10:16 am
Can see what you're saying about asking for the Dexa scan, Hugh. BUT - surely it should be offered as a matter of routine when the diagnosis is given? Seems we know more than the doctors once again when it comes to CD! I was offered it without having to ask, but it was probably because I have arthritis as well.
by Mariea » Thu Aug 06, 2009 10:46 am
Hi,
I was diagnoised last year with CD and when I requested a DEXA scan to the doc she said that there was no need, that I was too young....
....this sounded very familar to me as when I was 19 I was going to a doc on and off for years, was very unwell...eventaully 2 years later i diagnoised my self with underactive thyriod (it was actually over 100 times underactive! - the specialist said he had never seen a case like it!) so I went back to my original doc that I had been with at the begining, and she just kept apoligised saying that she never thought of testing for that as I was so young!...
....so from this I have learned if you want a test carried out, just request it, and request it again if neccessary!
Thankfully my Dexa sacn was OK
I was diagnoised last year with CD and when I requested a DEXA scan to the doc she said that there was no need, that I was too young....
....this sounded very familar to me as when I was 19 I was going to a doc on and off for years, was very unwell...eventaully 2 years later i diagnoised my self with underactive thyriod (it was actually over 100 times underactive! - the specialist said he had never seen a case like it!) so I went back to my original doc that I had been with at the begining, and she just kept apoligised saying that she never thought of testing for that as I was so young!...
....so from this I have learned if you want a test carried out, just request it, and request it again if neccessary!
Thankfully my Dexa sacn was OK
by hugh » Thu Aug 06, 2009 10:53 am
Absolutely Jess. Hopefully mine was an isolated case. But if not I'd encourage people to request the scan, or at least accept the offer of one if they get it. There are no symptoms unless you are unfortunate enough to have suffered a fracture in unusual circumstances...
by daveyboy » Thu Aug 06, 2009 1:42 pm
Cinders wrote:In relation to osteoporosis, is anyone taking Actonol once weekly?
.
I was taking Actonel but found it tore the stomach out of me and needed Nexium 40mg to counteract,
also have you tried sitting up straight in a chair without moving for 30 mins not as easy as it seems.
.
Bottom line is, I now take calci-chew D3 Forte twice a day and try to eat calcium rich foods.
.
Best Regards,
David
[url=http://irishdaveyboy.wordpress.com/]The Irish Coeliac
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Osteoporosis
by Suzanne » Tue Sep 08, 2009 10:46 pm
I've been on the GF diet pretty much all my life - from age 2. I was diagnosed with osteopenia ( spine/hips ) and osteoporosis when I was 37. Shock doesn't quite cover it. I only went for the scan because my mother also coeliac pestered me for the better part of a year to get a scan done as she had recently been diagnosed with osteoporosis. I have always had a diet rich in calcium but my bloods showed deficient vit D. That's the real crux. No Vit D - all the calcium in the world won't help your bones.
Anyway, calcichew and 3 years later, spine/hips are better, wrists are worse. I exercise a lot but it didn't seem to help my wrists. I guess I was lucky I found out when I did as I used to train quite a lot in martial arts. All that kicking/punching and being thrown around and I never broke a bone - just lucky I guess ! I have since given up all martial arts - can't afford to break bones with 3 boys to look after.
I can't understand why dexa scans aren't obligatory for all diagnosed coeliacs. It's a lot cheaper to prevent an injury than treat it after the fact. Now the dexa scan doesn't cover 'wrist scans' as a matter of course - only spine and hips. Theory is a wrist fracture won't cost the HSE too much but a broken hip or spine fracture will, so scan only those.
Anyway my advice for what it's worth - if you haven't already had a scan insist on one. 10 minutes, instant results, €115 well spent. And you can claim the cost back on most health insurance and failing that on the MED1 - assuming the budget doesn't cut that out.
Anyway, calcichew and 3 years later, spine/hips are better, wrists are worse. I exercise a lot but it didn't seem to help my wrists. I guess I was lucky I found out when I did as I used to train quite a lot in martial arts. All that kicking/punching and being thrown around and I never broke a bone - just lucky I guess ! I have since given up all martial arts - can't afford to break bones with 3 boys to look after.
I can't understand why dexa scans aren't obligatory for all diagnosed coeliacs. It's a lot cheaper to prevent an injury than treat it after the fact. Now the dexa scan doesn't cover 'wrist scans' as a matter of course - only spine and hips. Theory is a wrist fracture won't cost the HSE too much but a broken hip or spine fracture will, so scan only those.
Anyway my advice for what it's worth - if you haven't already had a scan insist on one. 10 minutes, instant results, €115 well spent. And you can claim the cost back on most health insurance and failing that on the MED1 - assuming the budget doesn't cut that out.
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