Hidden12 years ago

How frightening for you. Its the first Ive heard of it, never read anything about gluten ataxia. Diagnose 4 half yrs ago. Last year had strange attack doctor said was hips, no way was it. Hope others can throw light on this. Best wishes.

IreneAdministrator12 years ago

Thanks for coming across and sharing your experience. Having just seen a gastro specialist, I'm curious to know whether it was suggested to you that you need a 'drastic' diet change involving the FODMAP diet. I've have been advised to go on this diet but am not clear whether this is supposed to clear up the many random symptoms being experienced. I'm also to have a torso/pelvic CT scan to discount anything else going on. I did specifically ask what would likely be causing the irritating pins and needles sensation in the fingertips of both hands and was told it could be a number of things, including calcium. All the obvious causes, that can be tested via blood test, have been actioned and are seemingly fine. It's very frustrating. When I mention calmly to the docs that I'm unable to go far from home as I'm liable to feel very unwell it doesn't seem to spur any sense of urgency.

Hidden12 years ago

when my calcium was mega low i suffered pins and needles all the time in my hands and feet....thats stopped now... that i have huge doses of calcium and d3....

KarenBC12 years ago

Hi. I know how frightening it can be because I have gluten ataxia. Its horrible because everyone thinks "its in your head" but I can confirm it isn't and you wonder where its going to lead to.

I also get it with soya, corn and potatoes. Makes life complicated but at least you know why and can try and do something about it. I don't even mention it to most doctors now as they think its me being hypochondriac. Particularly when all the scans etc come back normal. Its not easy for family to accept either.

good luck

glutenhater12 years ago

thanks, its really ruining my life, im only 30 suddenyl ive gone from being able to walk, albeit ive always been knackered after just walking down the street and ive had trouble climbing stairs! ive felt like an 80 year old. now i am walking slightly better but still feel i cant stand for too long or else i might fall over. i have been completely disgusted!!!!!!!!!! by my doctors gastroentolrologist didnt even come to see me to follow up and the specialists sent me home from hospital even though i couldnt walk, they didnt even offer an explanation like ME or CFS just nothing, we dont know whats wrong with you, i dont evn mentioned gluten ataxia to them as i know they wont have even heard of it, its disgraceful!! again they werent bothered that a 30 yr old girl couldnt walk 5 metres. i feel like its a battle, when will these symptoms go away? and is it definately gluten ataxia/coeliac, i just ate a salad with tiny bit of salad cream which didnt say gluten, and i came out in a itchy rash on my stomach, im waiting on the biopsies and bloodtests coming back for coeliac, ive been gluten free 2 weeks but still kind of feel the same, so tired. just want my life back.

lizlivefree in reply to glutenhater10 years ago

Just came across your post as I am having gluten ataxia symptoms and have been gf for two weeks with no improvement yet. And yes, no dr is taking me seriously. Any update to how you are feeling??

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Penel12 years ago

So sorry to hear about your problems.

Some studies have been done at Sheffield Hallam University on gluten ataxia ncbi.nlm.nih.gov/pubmed/129...

Dr Marios Hadjivassiliou is a leading specialist on the effects of gluten.

You need to be armed with as much information as possible, because even getting diagnosed with straight forward coeliac can be difficult..

As Irene has said, it is possible that other food may also be affecting you. It's recommended to keep a food diary to see if you can spot any problems. I am lactose intolerant and cannot eat yeast. I also have to keep sugar to a minimum.

Good luck and stay strong.

glutenhater12 years ago

if only i could see this specialist!!! :0( i live in london

mediachap12 years ago

@glutenhater... Do you drive? How much would you spend on a service and MOT for a car in a year? Get your Doctor to refer you to Sheffield Hallam and buy yourself a train ticket. Your body is a machine and it needs looking after. I failed to listen to the warning signs myself and have spent 50 years running it into the ground. No way back for me... I can barely walk some days... Joints are shot... And the rest. Listen to your body, trust your instincts and stand by your hunches.

Venetia9 years ago

yes have experienced this but mild compared to your descriptions, usually after eating gluten by accident. initially brain fog, and the worst unsteady in walking. if I went back to very basic gluten free diet it did clear