I think gluten sensitivity may be the cause of my ataxia (it has not been formally diagnosed) and would like to know if there is anyone with the same and their symptoms and how did they get a diagnosis?
I am not eating any gluten but is there any other similar grains that should be avoided.
I found lots of useful information here on Healthunlocked "Gluten Free Guerrillas"
Also I joined Coeliac UK for a year coeliac.org.uk
I do not have a diagnosis other than idiopathic cerebellar ataxia.
Most of the diagnoses of gluten ataxia in the UK are made by Prof Marios Hadjivassiliou at the Sheffield Ataxia Clinic, who also works closely with Coeliac UK. If you live in England you should be able to get a referral to Sheffield. The details of the clinic are here: ataxia.org.uk/newly-diagnos.... If you don't live in England you may be able to find a neurologist in one of the devolved nations who can talk to Marios and arrange for the test.
I was sent to Sheffield Ataxia Center from Scotland.
You were lucky to get the referral! In recent times we have found it impossible to get referrals for people who have contacted us.
I was very lucky. I am know on a drug they cannot get up here which means they let me continue to stay at Sheffield Ataxia Center.
Thanks Sue for that info. Unfortunately for me to get a positive diagnosis I will need to be eating gluten and I've been gluten free for 6 months now, and considering the irreparable damage this can cause then no way will I be doing that.
Yes, that presents a problem!!!
Not really, the changes are measurable at Sheffield regardless of when you stop eating or drinking gluten. I tested as not coeliac a couple of years before the ataxia symptoms really took hold, gave up gluten after hearing for the first time 'ataxia' and then reading Prof Hadjivassiliou's papers. Eating gluten might help a diagnosis, but not in my case. The change after a few days of stopping eating gluten were so dramatic, and I was almost totally bedridden, unsafe to move, that eating it again would have been an act of self destruction.
The sensitive equipment at Sheffield can detect the changes in the cerebellum-as I said in a previous reply to this post, a diagnosis of a probable cause is enough to work from.
Hi Pinjem. That all sounds very interesting. It seems that you have learnt a great deal on your journey. How sad and frustrating it is that there is only one of these specialist ataxia clinics.My journey has made me realise that healthcare professionals really need to get their act together. At the very least then ataxia symptoms should be a red flag to them and if they haven't got the knowledge then either do the research like we have to or signpost patients to someone who does!
A friend who was having digestive problems, the first thing her doctor said to her was "do you have a problem with gluten".
It makes me really mad that there could be just one sufferer with ataxia caused by gluten who has not been diagnosed.
I'm sorry that you are so unwell with ataxia and wish you all the best.
Take care, keep strong and look after yourself.
I have never had a positive coeliac test, gluten affects me very badly. You do not need to be a coeliac or to have a positive test to have gluten ataxia. Coeliac tests can be a false negative anyway unless your innards are looked at. It helps if Sheffield sees you early enough if still eating gluten but you might damage your cerebellum if you do continue, their test is not a coeliac test alone. Sheffield has some very sensitive measures of changes to the cerebellum- you cannot argue with those test results. I gave up all gluten and manged to visit the Sheffield clinic some months later. I am permanently affected in some ways and have had minuscule improvement over the past few years in others. I dread to think how bad I would have been if I had waited until my diagnosis to stop eating gluten, the progression was so devastating.
I have a cerebellar ataxia- I must not ingest gluten, that is all I really need to know. Your choice, self preservation was and is my first choice.
Joining the Coeliac society is very useful, gluten is in lots of foods. GF in shops is a good start. There is lots of info- Grains should be avoided too- rye, barley, that info is there too.
Get your ataxia diagnosed correctly for the best possible treatment. You may have a brain tumour, this also causes ataxia as well
what sort of symptoms are you having?
My Main symptoms that I think are connected to gluten sensitivity and which are slowly reducimg now since going gluten free are:Peripheral neuropathy in my feet and legs
Brain fog
IBS symptoms have reduced greatly
Balance and coordination (ataxia)
All of these have had a great impact on my life and I am finding it nearly impossible to find d any health professional who has knowledge of or any interest in these.
The Sheffield Ataxia Clinic is the place to go but impossible in these times. I have an appointment at The UCLH in November but in this time irreparable damage could be done so I have gone GF by myself.
If you feel that gluten may be your problem then you need to act sooner rather than later.
Best wishes.
Morning penelope. I have ataxia. Unfortunately mine is a different form but they also suspect gluten ataxia. I am not saying you have this but my speech and gait re balance etc is very poor. This form of damage can correct itself but csn take up to a few years. So my advise is get refferred to sheffield. Follow a very strict gluten free diet. Ask your doctor for blood test re coeliac, TTG & ema. The ema is very important. This can show signs etc of coeliac disease. Sheffield is the only hospital in uk that fo the TG6 test which is used to disgnose gluten ataxia. If your symptoms are mild then hopefully a strict gluten diet will help. Gluten ataxia is not a sensitivity but an auto immune disease. Hope this helps.
Ok I thought that you were interested in what gluten ataxia felt like for me.Self diagnosis is out of desperation, as doctors etc have little interest and knowledge as I said.
There is however lots of info and research if you can understand and read research papers. Also Coealic UK cover gluten sensitivity leading to ataxia. Unfortunatly waiting 1 or 2 years or the time it may take to get an appointment at Sheffield, and ingesting gluten and waiting for a positive test, is not a luxury I can take.
My take is the NHS let's us with a rare disease down. Professionals need to get their act together. If they have a patient with CA then if they don't know, then find out!!!
It will cost more finacially for the NHS over time to support these patients!
Let alone the anxiety and life changes it makes to us.
But keep smiling 🙂
I am interested. Thats why i asked re your symptoms. I saw 2 neuros then the 3rd picked up on my slurred speech & very bsd balance issues. There are many forms of ataxia. Mine also as neuropathy. The ataxia diseases are rare hence difficult re diagnosis as they have similar symptoms of other neuro issues eg: MS. But like i said whilst you are waiting for sheffield appointment your g.p can test coeluac, ttg & ema. Does this mske sense.
I can understand research papers etc as i was a detective for 22ys snd naturally nosey.
I jotted this down from an online article, but couldn't find it again to see who wrote it - he was knowledgeable about gluten, and reported something I haven't seen anywhere else. I wish I'd seen it decades ago because my diet is as limited a one could get, and it would have helped me understand why. Anyway, sorry I can't send the link, but maybe if you searched around you'd find it or something similar.
Here is a list of foods that might be recognized by the body as "gluten-like" (same protein, as far as your body can determine), eliciting a significant immune system reaction:
cow's milk, milk chocolate, whey protein, casein, yeast, oats, corn, millet, instant coffee, rice
The following foods can still cause a reaction, but are considered safer:
sesame, buckwheat, sorghum, hemp, amaranth, quinoa, tapioca, teff, soy, egg, potato
(I've reacted to all of the above.) Good luck with your diet and health. (-:
Hi Ruby cubeI really liked your answer. Since writing the original post I have had a cross reactive foods test.
Results took 4 weeks and it was important to eat all the foods apart from gluten ( for obvious reasons)
Well I reacted to dairy, rice, and buckwheat all of which I need to avoid. and to some extent corn. Soy and millet which I should eat in moderation.
Avoiding rice while gluten free is a real problem as it is in most gluten free products. So a really steep learning curve.
I am slowly getting my head round eating a balanced diet while avoiding these foods.
Luckily the nutritional therapist who is advising me is really good and understands gluten avoidance. It costs but is well worth it.
I'm sure that you would not get this advice and help on the NHS.
Do you have gluten ataxia if you don't mind me asking. I have yet to find someone else that does.
I was tested for gluten by the neurologist and no problem found so I think he does not believe or understand the route I have taken but the positive results re the ataxia speak for themselves. He is out of his depth!
These professionals really need to get up to speed with the evidence.
Take care and best wishes
Hi Penelope! When I read your comments, I wanted to cry, both because you found this helpful and because you're the first person I've talked to who knows what this is.
I've self-diagnosed this as gluten-sensitivity. (I live in the US, by the way.) I asked three doctors about it before the pandemic started, and none of them had heard of gluten ataxia. For a while I thought I must not have it because the episodes would come on even when I thought I was eating GF. I Just now came across the info I sent you, and realized why I've continued getting attacks after eating what seemed like harmless foods, like rice and potatoes. I've always reacted to those, but every now and then would eat then anyway. But now with what I believe to be ataxia, I won't.
I'm so happy to hear you're getting good care and advice from your health-care providers, and are feeling better! Thanks for your reply - this is the reason I joined yesterday, to feel validated with the conclusion I've come to, and to connect with someone who has the same type of ataxia. When I've told a couple of friends of my symptoms, they said, Oh, yeah, I've had vertigo; it's really common. Meanwhile I'm stumbling around and slurring my speech some evenings. My husband knows and has been really supportive, as have my two grown daughters, so I'm not entirely alone in this.
I so agree with you that the medical professionals need to catch up to the researchers! But it's typical of all new diseases for them to be behind and often sceptical.
You've made my day, and I hope yours is just as wonderful. Take care...
Hi I recently attended sheffield ataxia clinic, and agreed to be used in trials Professor Marios wrote to me last week that I had tested positive for a gluten antibodies, I had a lumbar puncture and encloropathy which ruled out celiac disease ,I’ve been advised to go on a strict gluten free diet
Improving diagnosis, and management of Gluten Ataxia.
Gluten Ataxia 
Cerebellar ataxia through gluten intolerance ?
