dizziness

[urbangirl]

A few years ago, 2008 I think it was, I was diagnosed as having Benign Positional Paroxysmal Vertigo (BPPV) which caused me to go dizzy when I changed position in bed eg rolling over. At this time I didn't even think I had any gluten issues. BPPV can apparently be caused by a variety of things including trauma or ageing. I probably fitted into the latter category. However, it disappeared after a few weeks but returned this week out of the blue. Mindful that NCGS/CD is not responsible for all other problems I am curious to know if any one else has had this. I had a quick search and found some stuff on menieres disease and also feeling dizzy with CD but nothing on BPPV. Thank you!

[tassie]

I have this at the moment and the physio seems to think it is coming from my neck. Never considered it might be to do with gluten, but then I have been totally gluten free for a year now and still have it. So many things can cause it I suspect.

I had it many years ago and went on a low salt diet and that seemed to help, but might have just been coincidental

[Margaret-C]

I was diagnosed with CD 5 years ago when I was 63 yrs old and have been on GF diet since. In March this year, I suddenly became dizzy/giddy and had balance problems. After seeing GP, ENT Specialist and Neurologist, I was diagnosed with BPPV which lasted around 2 months. I am fine now but was told it could return in the future. As far as I am aware, there is no connection between CD and BPPV but maybe others can throw light on this. Earlier this year, I had a prolonged period of inactivity due to a bout of sciatica and having read about BPPV, I think this may have contributed. I do hope you soon recover from this current bout of BPPS which I know can be very debilitating.

[Margo in reply to Margaret-C]

Sorry to appear dim Margaret-C what does BPPV and CD mean please?

[Margaret-C in reply to Margo]

You are not dim Margo, I should have written it in full. CD is Coeliac Disease and BPPV is Benign Paroxysmal Positional Vertigo.

[Margo in reply to Margaret-C]

Thank you Margare-C

[Hidden]

I was diagnosed with BPPV last year have been gluten free for 4 years now since diagnosed with CD. I was told so many things can cause it and that it can return any time and could possibly go though a spate of it then could disappear for ages before it returns again. I had it return a couple of weeks ago but it didnt seem to last as long as before. hope your bout of it soon goes it not nice at all.

[Hidden]

Hi urbangirl, this sounds like a nightmare so poor you, here's a couple of video's on you tube asking is it BPPV or autoimmune.

youtube.com/watch?v=9UKxztf...(Not working as expected?)

youtube.com/watch?v=KzooYFZ...(Not working as expected?)

There are exercises that you can do to alleviate BPPV so you want to ask your GP if you should try these.

And I hope that you feel better soon

[Allie65]

Hi, yes. I suffered vertigo and was diagnosed as having Ménière's disease for years. Since going GF it has completely stopped. Absolutely positive it IS linked.

[beckymc]

I'm also sure it's linked. My gp says it may be caused by recurring vitamin deficiencies and fluctuating hormone levels. Before being diagnosed cd, I had frequent spells of dizzyness/ lightheadedness.

Since going gf, I also take a very good liquid vitamin and eat a large variety of nutrient dense foods. I try to drink alot of filtered water, keeping a bottle with me all day. So far, I haven't had another episode.

[Hannah-Keri]

A Lot of people have different symptoms before getting diagnosed with CD, I had the stomach cramps and I couldn't go out of the house because I was on the toilet 10+ times a day which was awful

[urbangirl]

Thank you all. When I wrote this post I was convinced that BPPV was something completely unrelated now I am not so sure. My GP diagnosed me with BPPV without examination just diagnosed after hearing my symptoms. I have never seen an ENT consultant either. When it first happened I was absolutely petrified as it is so scary to be dizzy. I couldn't ride my bike, swim, or drive. Gradually I got my confidence back and learnt strategies to deal with the dizziness. I think I had a couple of mild attacks and the one this week is not as bad as the first one was. Now here is the interesting bit, at least I think it is interesting! This week I have not been feeling very well with glutened symptoms but have not been eating gluten, neither have I been anywhere where this could have happened. I have been racking my brains as what has gone wrong and have rightly or wrongly come to the conclusion that I have not taken cross contamination seriously. I won't bore you with the details but bread certainly sits around in our kitchen and guess who clears up the crumbs! And of course it doesn't just stop there does it? Will be re-thinking our kitchen this weekend.

I have read the links Jerry thank you! And I am beginning to think BPPV could have been wrongly diagnosed and is possibly an autoimmune issue. All of this makes sense now. I was alerted to this possibility because I read some people have dizziness as one of the symptoms of CD, and it seems there is a link with Menieres. Of course all this may be completely off course and please somebody put me right because I certainly don't think NCGS is responsible for everything that goes wrong with me. What I would say is: as BPPV is associated with ageing, people may be told this is what you have to put up with as you are getting older and there is no cure. Dizziness and balance are associated with ageing and clearly a safety issue. Is there an increase in older people being diagnosed with NCGS/CD? And is this linked to balance/dizziness? If so then maybe this needs to be looked at.

Allie, Venus, Margaret C, Becky, Tassie and Hannah thank you for your contributions. I think you all make very valid points and you have made me think. I stopped eating gluten 18 months ago and have had no problems with dizziness (apart from minor attacks) until this week.

Thank you for reading this! Have a good weekend!

[Maya23]

I have lupus (auto-immune disease) and I am currently suffering from a 'flare up' of the disease. One of the main symptoms that I get with a flare up is dizziness and vertigo - I'm now being referred to a neurologist due to the vertigo which comes with staggering around (losing my balance), sometimes slurring my words, not able to think clearly, and various types of nerve pain all over my body. I've been gluten free for nearly 2 years, and I know that gluten contamination sets off a flare up, but also sun exposure and stress play their part, and it's summer and life is stressful at the moment, so hence the flare up (I'm careful about cross-contamination in the kitchen).

Thanks for the videos posted above, they are really helpful. I know my vertigo is auto-immune caused because every time the lupus goes quiet, the vertigo goes away. I feel it will help me to know this is a known link when I visit the neurologist.

[urbangirl in reply to Maya23]

Dryad that sounds awful. Although I don't have slurring words my head feels full when I get dizzy and I certainly can't communicate with people for a few seconds, then I feel sick. But because I know what makes me dizzy I try to avoid movements that will bring on the dizziness. I'm interested how the sun affects you because I spend a lot of time outside. How did you discover this was affecting you? I hope the neurologist can help you find some solutions. Here is a really good website/forum for dizzy people - they were really helpful to me.

dizzytimes.com/content.php

[Maya23 in reply to urbangirl]

Hi again. One of the unfortunate symptoms of Lupus SLE is sun sensitivity, where the UV exposure on your skin makes the lupus become active (due to immune system reacting to dead skin cells) so I have to stay out of the sun which can be hard in the summer. THe more active the lupus is, the more dizzy I become!

Thanks for the link

[Penel]

I have experienced various bouts of dizziness and loss of balance, the most severe during my 20s (falling off of chairs etc).

Now retired I have been able to take up exercise regularly, in the form of Pilates. It has improved my strength, flexibility and my balance. This may be coincidental and of no use if you have BPPV, but I wonder if there are any exercises that would help you? Although one may not be able to counteract all of the effects of ageing, staying active if you can, seems to be helpful.

[urbangirl in reply to Penel]

Thanks Penel you are so right we must keep active as we get older. I do go to Pilates but some of the exercises are off limits because they do make me dizzy. I think Pilates is so good - my GP and physio recommend it - I have discovered muscles I never knew I had! It is good for aching muscles too which I suffer from. I do swim a mile nearly every morning and fortunately this bout of BPPV has not had any effect on this even though I swim front crawl and therefore turn my head from side to side. This episode is aggravated by lying on my back, getting up and bending down. Also I am still able to cycle. I feel so lucky that I can do these things as I know BPPV has had a very disabling effect for some people and also it has been permanent. Hopefully this will disappear soon.

[lan-031243]

Funny enough I've just started to get dizziness when I get into bed - not sure why - not been to doctors yet.

watch this space! (hate going to doctors so been putting it off).