Does anyone know much about this aspect of the condition and does it mean I am at risk of osteoporosis?

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I have vitamin D deficiency and am awaiting coeliac test results.

I have aching bones !

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14 Replies

  • Posted

    hello,

    I am currently going through the tests too.

    I don't have any experience of aching bones from Coeliac, but my mum does. She has been gluten free for a few years but started getting aching bones not long ago. She was told this would gradually go if something (unsure what they said specifically) was added to her diet, so basically a lack of vitamins I'm assuming. She did what they said and she doesn't experience this any more. I think the risk of osteoporosis is low from Coeliac, but mention your concern to your GP/Dietician.

    Hope this helps!

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  • Posted

    Thanks for getting back to me !

    Ive been prescribed vit D capsules but need to speak to my GP next week as I have lots of unanswered questions.

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  • Posted

    Hi. Before I was diagnosed 15 years ago I was told I had ME because I had constant muscle and joint pain. This all went away when I was tested for gluten and went GF. I was also told that because I had coeliacs and been undiagnosed for a long time , I had been at risk of osteoporosis and was put on calcium and vit D. I presume this is because we don't absorb nutrients if we are coeliac due to the villi being flattened. It's interesting when reading this forum how we are all different in some way. Some of the problems I feel are GPs who are not always informed ( although better now) and if it's not in the text book don't always think our symptoms are to do with gluten,.!
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  • Posted

    Thankyou for getting back

    I had rickets when I was little (in the early 60s) so am a bit concerned about my bones and wondering if its related to coeliac (if Ive got it!) - its beginning to look that way to me though.

    My other concern is how long it will take to get the vitamin D levels back up and give me my energy back - fatigue is doing my head in !

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  • Posted

    Hi I have CD and have had aching bones, I take Adcal D3 at the moment. There is a risk of osteoporosis with CD and if you are diagnosed with it you should be sent for a Dexa Bone scan

    Hope this is helpful

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  • Posted

    For lots of information which will help you google the Coeliac Org UK website.....anyone with the symptoms described here - or IBS - needs to read up on it. You can also ask questions via the site's "Talk To Us" link....many people told they have IBS are later found to have Coeliac disease...by which time they are deficient in vitamins and minerals - have low bone density etc etc ....so if no joy with your GP request a referral to a Gastroenterologist...many GPs are still not following NICE Guidelines to test for Coeliac disease first! It is a serious condition if left undiagnosed......it is not an allergy but an auto-immune disease. Do not cut out gluten from your diet prior to being tested or you will get a false negative result. This happens to so many people nowadays because in desperation they try it out for themselves in order to feel better....but blood tests need to show antibodies to gluten in order to prove it...so if you have cut it out you must eat plenty of gluten for at least 6 weeks prior to a blood test.

    The pains in your bones and joints are due to your system fighting itself....I had this myself - as well as being very anaemic (down to blood transfusion level) by the time I found a clued up lady GP! I was referred to a Gastroenterologist who understood the disease and he diagnosed me with 95% certainty just by talking ton me - later followed up and confirmed by a biopsy. Took me two years to get really well again due to damage to the villi and my very low iron levels in my liver....but finally got there!

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  • Posted

    Thankyou for the info - I have stopped having gluten but I had already had the blood test done so the result will be on the basis of regularly eating gluten up until then. Fortunately I am not anaemic but my vit D level is very low. I realise it could take a while to recover.

    I'm pleased to hear you are ok again.

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  • Posted

    Hi Bettyboop4

    Most consultants and doctors will want you to have an endoscope to confirm your diagnosis, I have heard of a few people who have had a diagnosis from the blood tests alone, however this isn't the norm, basically because going gluten free is such a life changing thing they like to be 100 % sure that you have CD before committing to it.

    You need to ascertain whether your doctor will diagnose on blood test alone, if not then you need to continue eating gluten as otherwise your biopsies may return negative results.

    Have a proper diagnosis is important as it provides more support via prescription foods, dexa scan, dieticians etc.

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  • Posted

    Thankyou for the info - my GP said in her experience they don't necessarily need a biopsy to diagnose CD and the consultant she knows does not usually do that.

    I will have to wait until my result arrives and take it from there.

    I am very loathe to start eating gluten again as my vit D level is very low and I understand it could take several months to recover.

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  • Posted

    That is good that you wont have to go through the endoscopy, its not too bad anyway and over in minutes, but if they will diagnose without it then all the better as long as you get a proper diagnosis.

    Don't forget to ask for the dexa scan, also have they checked your other vitamin levels etc.

    My vitamin b12 was low but within range, however my GP is giving me injections and my zinc was also low and I am on effervescing tablets for this, in my experience the doctors tend to do full blood counts and not check vitamin and mineral levels as standard, also if they do get the results yourself as again you can be justabove the range and it wont be picked up by them but it could still be too low for you.

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  • Posted

    tm62 has offered you very good information - take note of it.

    If the blood test comes back as confirming Coeliac disease then that is fine - but sometimes it does not confirm one way or the other - and I believe there is also an alternative blood test you can have as well in the event. The endoscopy does at least prove it for you as the piece of your gut will show if the villi (nutrient absorbing hairs) are there or not. If you are Coeliac it is the gluten in your diet which causes them to withdraw into the gut leaving it smooth - and hence the lack of vitamin and mineral absorption you speak of.

    If you read up on Coeliac UK website it gives you all the information about symptoms and diagnosis you need to be aware of....and the nitty gritty which is so important for people to get a correct diagnosis. It is invaluable to anyone in the early days after diagnosis - and keeps you up to date with the progress being made in respect of the disease over the years. Cannot recommend it highly enough. Total abstinence from gluten is essential in order to get well....and gradually the gut recovers and starts to absorb again...and you start to feel better. I was never tested for vitamin deficiencies either - it is not something they do but which would be so useful to all of us - as it is I still take Vit B Complex, Vit D and try to eat my 5 a day...I was on Calcium and Vit D for a year or so too - supplied by the GP - as dexa scan showed low bone density in my hips....

    Good Luck - you are getting there!

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  • Posted

    And totally agree Netcann - similar experience to me!!! They are supposed to know more about it these days but it is not always the case....and of course, Coeliacs do get prescriptions for basic food still...bread, flour etc....so this does not encourage them to diagnose it! Saying it is IBS puts the ball back in the sufferers court nicely - and frequently found to be wrong in the end....see Coeliac Org UK website yet again for info. They are constantly fighting for GPs to do as the NICE Guidelines tell them to ...and test for Coeliac disease before they diagnose IBS ...but it just is not happening! Can see that on these forums. If someone is given a colonoscopy or an ultra sound scan they think they have been tested for Coeliac disease as well - which is not the case. NB Coeliac disease is tested from the mouth end!
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