gluten ataxia/intolerance/coeliac

Hi, i am so glad i found this page!!!!! what an excellent community!!!!!!! I just started gluten free and only just found out about Gluten Ataxia, i have just actually been in hospital very unwell for 2 weeks, after going 4 times to ER where they ignored me and sent me home!!!!! the 5th time a doctor actually saw that i couldnt walk!!! and kept me in for testing, i had shaking, diizziness, unable to walk suddenly, i was bed bound, very weak, palpitations, muscle spasms, confusion speaking, not being able to say words, memory loss, also not being able to look directly at people, and having my eyes wander around, i was terrified in case i was losing my mind! it seemed to be associated with eating, i thought i was diabetic or something but that came back negative, they ran blood tests, mri of brain and spine, ct, nerve study, but couldnt find any explanation whatsoever, and discharged me, while the normal tests results were obviously great news for me, it left me no further forward, it was only one night in hospital i actually ate a digestive biscuit, boy did i pay for that!!! i was doubled up in pain shortly after eating, had sickness and diarrhea and a massive red itchy rash that spread all over my stomach and chest, luckily i took photos to show the doctors the next day and they ran some celiac bloodtests and ordered a endoscopy and colonscopy, im waiting on the biopsies coming back but i know myself i definately am intolerant to gluten, for years ive had itchy rashes and on and off diarreha, stomach pain, but these current symtpoms came on very suddenyl, ive since started eating gluten free, its quite hard as ive been eating gluten filled foods for years, so to have to stop and think before putting something in my mouth is new. but a small price to pay to feel well again! i really do hope to god that in the coming weeks i feel better and get back to my normal self as at the moment i cant do anything i cant even walk far which is shocking as a month ago i could walk fine? im house bound. I dont think many doctors have even heard of Gluten Ataxia, I would be very interested to hear back from anyone who has similar symtpoms and any advice thanks

10 Replies

  • 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.

  • 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.

  • 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....

  • 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

  • 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.

  • 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??

  • So sorry to hear about your problems.

    Some studies have been done at Sheffield Hallam University on gluten ataxia

    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.

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

  • @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.

  • 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

You may also like...