Improving diagnosis and management of Gluten ataxia
Ataxia UK, Coeliac UK, and the Sheffield Hospitals Charity have awarded funding to Professor Marios Hadjivassiliou and colleagues at the Sheffield Ataxia Centre, for a research project to help improve the diagnosis and management of gluten ataxia.
The project aims to allow the referral of any patient with progressive ataxia without a diagnosis, to be tested with the appropriate blood markers available in clinical practice in Sheffield.
If you have had tests to rule out other types of ataxias and still do not have a diagnosis of the cause of your ataxia, you can be referred to the Sheffield Ataxia Centre to be tested for gluten ataxia.
If you are diagnosed with gluten ataxia, you can take part in the study, where you will follow a strict gluten-free diet.
Participants will then be followed up after one year to assess the impact of the gluten-free diet.
If you are eligible to take part in this study and attend one of the following ataxia centres, you can be referred to the study via the below contacts:
Oxford: email Professor Andrea Nemeth on andrea.nemeth@ndcn.ox.ac.uk
London: email Professor Paola Giunti on p.giunti@ucl.ac.uk
Sheffield: email Dr. Priya Shanmugarajah on p.d.shanmugarajah@sheffield.ac.uk
Manchester: email Dr. John Ealing on John.ealing@nca.nhs.uk
Romford: email Dr. Rajith de Silva on rdesilva@nhs.net
If you do not attend any of the above sites, your neurologist can refer you directly to Prof Marios
Hadjivassiliou by emailing m.hadjivassiliou@sheffield.ac.uk.
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wobblybee
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I was diagnosed with Idiopathic Cerebellar Ataxia in 2018 and had all the usual tests which proved negative . My neurologist recently managed to arrange a TG6 blood test in Sheffield . The result was 4.2 U/ML , and a result >4 is positive.I have none of the usual symptoms of celiac disease or gluten intolerance . I am aware that it is important that a gluten free diet must be very strict, and as I am at the beginning of this journey I would be very interested to hear from other people who have had a positive TG6 test and their experience of undertaking a gluten free diet,either positive or negative
I find it very hard not eatigluten but making sure there's not gluten present my symptoms have got worse over last 6 mths so maybe I'm not doing everything right
Yes it is really hard to do gluten free. The free from aisle at supermarkets is full of unhealthy processed food that will contain ingredients that us trying to do GF just will not do us any good. Rice flour and gums, sugar and all sorts of additives. These should be avoided. And some people will find dairy does not do them any favours too. Try to stick to home cooked meals and avoid processed meals.There is a dietitian from the ataxia clinic at Sheffield talking to the Ataxia UK online support group which you may find interesting. See the website and support groups for details.
🤔 It’s possible..you’ve experienced problems with cross-contamination. It’s one thing being very careful in your own kitchen about keeping separate utensils and equipment (such as a toaster)….and something else being trustful with restaurants when eating out.
🤔Did you know..some beauty products, and even some medications can have ‘traces’ in them.
Unfortunately..even when GF diet has been strictly adhered to, some people do find that there hasn’t been much of an improvement in symptoms…this can happen.
🤔 Gluten Ataxia is considered Autoimmune…and sometimes a Neurologist will prescribe Mycophenolate.
Hi, yes it's complicated, we are all different. I myself self diagnosed and went GF before first appointment at Sheffield. This is not what the health professionals recommend. But I was running out of time with symptoms getting worse and I knew that all the time this would be having detrimental effects on my cerebellum. Would I wait for testing or take it upon myself and try a GF diet??? Gluten Ataxia and going gluten free is time critical. When you have gluten ataxia and go gluten free then it is not a cure but if done 100% and look after yourself as well this can stabilise symptoms and for some even reverse them. But there are many factors, age, how long have the autoantibodies been present, cross contamination, well being and health in general, other health problems, the list goes on.Some people have digestive issues, migraines and headaches, other allergies etc. We are all different and affected in different ways.
It sounds like you have a really clued up neurologist, they did well for you. Good luck with going forward, hoping your journey works for you.
Look up Paleo diet, that is no grains, no gluten and no dairy, but do you need to go as restrictive as this? I do a lot of batch cooking in the winter, bolognese, korma, casseroles. In the summer lots of variety with salads add protein, meat, chicken, fish and eggs Not forgetting nuts and seeds. If dairy free Coconut Collabritive do nice yoghurts, expensive though.
Start with what you do eat and go from there. BBC good food has ideas and you can choose by special dietary requirements. I can't imagine not eating veg.
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