Has anyone found that eating gluten has caused a neurological problem called cerebellar ataxia?Gluten in sensitive people can also cause peripheral neuropathy.
After years of eating gluten, obviously not knowingly I have now an autoimmune ataxia, gluten ataxia.
Now on a strict GFD and also dairy free and desperately trying to get my health back.
Unfortunately it takes years before seeing a health professional who can diagnosis GF. Most neurologists don't believe it even exists, hence the many years for waiting for a diagnosis.
Is anyone on this site with the same problem?
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penelope2
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Not recently, but I have experienced it in the past. Brain fog, my brain seeming to think two seperate thought threads, and unsteadiness when moving about. Very disconcerting. This particular incident was brought on by eating liquorice. At the time, I didn't realise it contained wheat. I drove to a nearby supermarket, and really struggled to concentrate on driving back. That was a few years ago. It has not happened again so far. But, I am much more savvy now.
Yes you are right, wheat is in liquorice.For me going gluten-free one of the first symptoms to lift wad brain fog. I had lived with it so long didn't even know I had it.
Good for you understanding what can be involved eating gluten.
I have all the symptoms of cerebella ataxia as described on the NHS website nhs.uk/conditions/ataxia/
I'm waiting to see a neurologist in the new year, although I don't know how long that will be.
I was diagnosed with coeliac disease about fifteen years ago, but until I read your post and researched cerebellar ataxia, I'd never heard of it and I never really associated my symptoms with coeliac disease ,so it might be worth mentioning it when I finally do get to see the neurologist.
Well positive answers, yes I know I have atrophy of the cerebellum, probably got gluten ataxia, as said by Prof Hadjivassiliou at Sheffield. As I wouldn't go back to eating gluten again for the TG6 test which the Prof understood, I self diagnosed as the wait to get to Sheffield ataxia clinic takes so long and time for me was running out, it had already taken 11 years to get to Sheffield. This is the only hospital running an ataxia clinic where you can get a TG6 test for gluten ataxia.A nutritional therapist helped me with testing for cross reactive foods after being gluten free for 6 months. But the reversal of the ataxia symptoms did not happen as I had eaten gluten for so many years. At least my symptoms have stabilised, I am always searching for was to improve my health, supplements, exercises and diet. So to all those with CD, stick to the diet and look after yourselves.
Many years, I am in my late 60s now. The damage to the cerebellum in my case, although now GF for over 3 years is irreversible although the ataxia symptoms have stabilised. Those with CD or gluten sensitivity need to be aware of the damage that gluten can do. It happened to me very slowly over years. Neurologists and doctors are very sceptical about gluten ataxia, in fact a neurologist told me he didn't believe in it and then went on to say his daughter is a coeliac!!! Ca n you believe that. Take care.
Sorry should have said. Tested many years ago for CD and negative.TG2 test for coeliac disease is available at most hospitals but the TG6 test for gluten ataxia is only available at the Sheffield hospital.
That's interesting, I'm just up the road in Leeds. I had a mild increase of TG2 after eating gluten prior to testing, (only barley and rye) but not enough for a diagnosis.
Professor Marios Hadjivassiliou is a leading gluten mediated neurologist and based in Sheffield Royal Hallamshire and they have the Ataxia Centre in same area.
Thank you, I am already with Professor Hadjivassiliou at Sheffield. Unfortunately because I have eaten gluten for many years then my ataxia symptoms have only stabilised not reversed. Damage to the cerebellum is irreparable. I am always trying new ways that might make a difference. Diet, supplements and exercise. I can walk unaided although I often take my hubby's arm when out.Those with coeliac or gluten sensitivity need to be aware that gluten ataxia happens insidiously and diagnosis takes so long and all the time gluten is doing this damage and before you k ow it, wham, you have ataxia!!!
Hi, my balance is less good if I eat even a tiny bit of gluten (unintentionally). Before I went gluten free, this was a symptom along with all the gastric ones. I'm fine as long as I stay gluten free. Good luck with getting the answers and care you need.
Hi, could you tell me what your symptoms were/are and what led to the doctors requesting MRI as I am awaiting one currently due to my symptoms and abnormal neurological clinical examination possibly connected to cerebellum damage. Thank you.
Happy to spread the word about gluten ataxia. Time is critical as the cerebellum atrophy gets worse and there is a pivotal point at which it cannot be reversed. Age dependent and individual too.Balance, coordination, fatigue and speech are the main symptoms of ataxia.
For me personally there were lots of symptoms I put down to being run down.
Fatigue that several nights sleep couldn't help.
Stiffness, coldness, my legs felt like tree trunks dragging them about.
Tingling loss of sensation and burning in my feet. It felt like tight socks even when barefoot.
Brain fog and feeling "spaced out".
Dizziness and coordination problems, had to think all the time about not falling over.
Hopeless in the dark would trip.
Feet got muddled getting out of the car.
Had to really focus and concentrate on driving.
Getting down on floor to play with grandsons was OK but getting back up was a nightmare.
Slurred speech started slowly, once every few weeks at first gradually increasing to bei g effected every day.
The list is endless.
I knew quickly in a few weeks of GF that it was the gluten causing the ataxia.
The TG6 test for auto antibodies is ONLY done at Sheffield. TG2 coeliac test will NOT pick up GA antibodies.
Most Neurologists do not believe in GA.
So research, Ataxia UK, Coealic UK, Beyond Coealic, NAF, PubMed, Professor Hadjivassiliou and make up your own mind.
Happy to spread the word about gluten ataxia. Time is critical as the cerebellum atrophy gets worse and there is a pivotal point at which it cannot be reversed. Age dependent and individual too.Balance, coordination, fatigue and speech are the main symptoms of ataxia.
For me personally there were lots of symptoms I put down to being run down.
Fatigue that several nights sleep couldn't help.
Stiffness, coldness, my legs felt like tree trunks dragging them about.
Tingling loss of sensation and burning in my feet. It felt like tight socks even when barefoot.
Brain fog and feeling "spaced out".
Dizziness and coordination problems, had to think all the time about not falling over.
Hopeless in the dark would trip.
Feet got muddled getting out of the car.
Had to really focus and concentrate on driving.
Getting down on floor to play with grandsons was OK but getting back up was a nightmare.
Slurred speech started slowly, once every few weeks at first gradually increasing to bei g effected every day.
The list is endless.
I knew quickly in a few weeks of GF that it was the gluten causing the ataxia.
The TG6 test for auto antibodies is ONLY done at Sheffield. TG2 coeliac test will NOT pick up GA antibodies.
Most Neurologists do not believe in GA.
So research, Ataxia UK, Coealic UK, Beyond Coealic, NAF, PubMed, Professor Hadjivassiliou and make up your own mind.
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