Improving the diagnosis and management of gluten ataxia

Understanding gluten ataxia 

Professor Marios Hadjivassiliou is a consultant neurologist and the director of the Sheffield Ataxia Centre - one of just two national ataxia centres in the UK, that cares for over 2500 ataxia patients. Professor Hadjivassiliou is also one of the founder members of The Sheffield Institute of Gluten Related Disorders, established over 10 years ago.

What is gluten ataxia?

Gluten ataxia is a neurological disorder that causes a loss of coordination, poor balance, slurring of speech, a tendency to fall and, if left untreated, wheel-chair dependency. It is caused by damage to the cerebellum in the brain and is triggered by gluten consumption. The condition can be stopped from progressing if it is detected early, and the patient follows a strict gluten free diet. Late diagnosis causes permanent neurological disability. For more information on gluten ataxia, please see our information pages on neurological conditions linked to coeliac disease. 

Unfortunately, diagnosing gluten ataxia is difficult. It is different to coeliac disease, so the blood tests used to diagnose coeliac disease are negative in gluten ataxia patients (unless the ataxia patient also has coeliac disease).  

What does the project hope to achieve?

This research aims to establish a diagnostic pathway for gluten ataxia so that more people can be diagnosed earlier which will reduce long term implications.  

Researchers have previously identified that certain antibodies, tissue transglutaminase 6 (tTG6) and antigliadin are present in blood samples of gluten ataxia patients. Patients who have had other types of ataxias ruled out will have their blood samples tested for gluten ataxia. If tTG6 and antigliadin antibodies are present patients will undergo a gut biopsy and brain scan as part of the diagnosis pathway and if positively diagnosed with gluten ataxia they will be advised on how to adopt a strict gluten free diet. After one year, the patient will be assessed to determine the impact of following a gluten free diet. This will allow researchers to determine if avoiding gluten has stopped the progression of damage to the nervous system and healed any damage that may have been present in the gut.

Project Title: Improving the diagnosis and management of gluten ataxia

This project is being funded by Coeliac UK, Ataxia UK,  the Sheffield Hospital Charity and the Greaves and Withey Foundation.   

Awarded February 2023

Research Project Commences in Autumn 2023

Duration: 24 months

Total Grant Awarded: £157K

For further information on this project, see the Ataxia UK website.