Vitamin D

Hello all, Ihaven't posted on here for quite a while, not very good at it!

So this is just a query as to whether anyone else has Vitamin D deficiency, what has been done about it if anything, any symptoms, plus what the deficiency caused? Should I request a Dexa Scan. Have been coeliac for 30 yrs and haven't had one. I have mentioned it a couple of times to the doc and have just been ignored basically! Always feel as though I'm being a nuisance, wasting their time really. Any info, advice will be gratefully received. Thanks everyone

13 Replies

  • Hi Leslaki,

    I'd change GP!

    My practice suggested to all coeliacs they go on a vit D and calcium supplement (via prescription).

    Also had Dexa scans approx every 2 year, but this seems to be slipping (budgets?)

    I'd push like hell or go somewhere more sympathetic.

    Best of luck.

  • Hi SilverDreamMachine,

    Thanks for the reply, been given VItaminD + Calcium tabs, been taking them for a couple of weeks now.

    Will make an appointment to see doc and will try again for the Dexa scan.

    Thanks again for the reply.

  • Hi Leslaki,

    I was diagnosed with a severe vitamin D deficiency 12 months ago. If you are vitamin D deficient it will cause you to feel very tired and run down. I personally feel that was also a contributing factor towards my depression issues.

    I was diagnosed because I am a Coeliac and I had my first DEXA scan in March 13. The result identified that I had osteoporosis, so the next obvious step was to have my vitamin D levels measured - which is how my deficiency was picked up.

    If I was you, I would continue to push for a DEXA scan if you've never had one. I believe that diagnosed Coeliac's are entitled to have them every 2 to 3 years. It might be worth checking if there are any NICE guidelines to back this up (sorry I can't remember off hand if any exist).

    These days, when I go to the doctors I always feel like I know more than they do about coeliac follow-up care and the general ongoing needs of a Coeliac. Basically, I've had to fight for nearly all the follow-up care that I have received in the last 18 months; and I always feel like I'm being a nuisance - so don't worry about that! It's okay!

    Challenging the decisions and knowledge of my local GP's has almost become routine for me. Fortunately most have been willing to listen and where necessary review their initial decision. If they haven't demonstrated an open mind, I've made a point of avoiding further appointments with them. I'm also slightly ashamed to admit that I've had to play one GP off against another on at least one occasion to get the treatment I've desperately needed (my B12 deficiency springs to mind here...).

    As regards treatment for vitamin D deficiency, I was eventually referred to an endocrinologist (and yes, I did have to challenge the GP to get this! - after reading the NHS guidelines he'd looked at, I realised that I wasn't getting the standard of care I was entitled to).

    Currently, I am still struggling to maintain my vitamin D at optimal levels. My hospital prescribed doses of vitamin D finished six months ago and I am at risk of becoming deficient again; despite taking vitamin D daily in my AdCal tablets. Because I am a Coeliac whose guts are still healing (I hope), I've found that I'm not absorbing vitamin D like a normal person does. Unfortunately it seems that standard NHS practice is to wait until I am clinically deficient again before helping me again! Grrr...!

    Best of luck, I hope you can find out a way of getting the care you need.

  • i got a deffecity in Vitamin D cos of my rheuamtioid arthrtis and my consultant think i have a muscel disease do with the defficty

  • Hi,

    I had low vitamin D when diagnosed 3 years ago. I was complaining of tiredness all the time which the doc thought was caused by low Vit D. I was put on supplements with Calcium. I also had a DEXA scan after I had read about it on various sites, I just asked the GP and he organised it for me. As SilverDreamMachines says these should be repeated every 2-3 years to check for changes. My initial one showed low bone density but the follow up had improved by 3% which is good to know.

    Don't forget the best source of Vit D is sunshine, so when the suns out strip off and soak it up !

    Good luck.

  • Yes the sunshine is a good source as long as you are not using sun cream and blocking the UVB rays. Also as we age we do not convert the UVB into VitD. Also good levels of cholesterol are needed to aid conversion so that's millions in the UK who will be deficient. You need to expose 40% of your body in the midday sun for at least 20 mins daily :-)

    Sunglasses also a problem as they allow your brain to think it is night time all the time :-) This affects hormones....

    Some people have VDR problems - Vitamin D Receptor problems - every cell in the body has a receptor for VitD as well as thyroid hormone - BOTH so very important.

    Low B12 can also cause fatigue and a host of other problems - most people seem deficient....

    Am sure you know all this - so apologies if you do :-)

  • Hi Leslaki,

    I have been recently diagnosed with coeliac disease. Amongst the tests to find out why I had severe fatigue severe vitamin D deficiency came up. I was prescribed 20,000 iu of D3 three times a week for 10 weeks. I challenged the fact that I had been prescribed tablets as how could they work if I have absorption issues. My doctor was happy for me to use the Better You Dlux 3000 spray(my suggestion). You spray it under your tongue and it is supposed to be absorbed by getting into your bloodstream that way. I'm getting to the end of the 10 weeks and I feel a lot better. Muscle/bone aches have stopped and fatigue has subsided. I will be dropping the dose a little but I will still be taking it as I live in North East England and the sun rarely shines.

    Check out the Vitamin D council website for more info.


  • I asked my GP about having a Dexa scan and was told that if I had a problem with my bone strength there would have been some indication of it by now (I'm 32 and been diagnosed for 8 months but suspected for 2 years). I'm not worried about it.

  • Hi blue_280

    I hope you don't mind me saying your doctor was wrong! There are no obvious outward symptoms to osteoporosis - especially at your age. Often osteoporosis won't be diagnosed until you've actually broken a bone. Do you want to wait until then? Wouldn't you rather know if you're at risk?

    If you are a diagnosed coeliac, then I recommend you challenge your doctors (daft?) assumption and be referred for a DEXA scan.

    I would've been completely clueless about the osteoporosis in my spine had it not have been for the DEXA scan. According to your doctor I should've waited until my spine crumbled before doing anything about it! Sound like a good idea to you? - Nor me!

    And Btw, I'm only in my early 40s - so not in the traditional age group where you would expect osteoporosis to be an issue.

    Take care xx

  • I had a bit of a row with my GP about vitamins. Originally they were prescribed/supplied by the hospital - I have other illnesses that cause malabsorption of vitamins. The NHS rules changed and my GP had to prescribe them. She refused point blank. 6 months later I had vitamin D deficiency. Suddenly she declared that I now had a reason to take them. She didn't like it when I told her that I wouldn't have the problem if she hadn't been so difficult in the first place!

  • Interesting, I'm a bit knackered at the moment. My iron levels are fine (I gave blood no problem) but I seem to get suddenly very tired - often round about 17:30 / 18:00 - and have to nap for half an hour or so.

    This is now making me wonder whether Vitamin D could be an issue. I don't want to have every test there is(I have a limited supply of blood so want to keeps as much of it to myself as possible) but this may need further consideration. We've got to sort out my potassium first.

    On the positive side, I was diagnosed last year and my GP arranged a DEXA scan earlier this year - which proved to be OK. Actually knowing that something is OK is quite important as well.

  • Hi all, thanks for all the replies, (apologies for my late reply) I had a DXA scan in September, finally. Am still waiting for the results!!!!

  • A helpful resource:

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