23 November 2020

New breakthrough diagnostic test leads to earlier detection of neurological damage caused by gluten sensitivity

A new diagnostic test leading to the earlier detection of neurological damage caused by sensitivity to gluten is being offered at Sheffield Teaching Hospitals NHS Foundation Trust in a UK NHS first.

The new TG6 test checks for the presence of the anti-transglutaminase-6 (TG6) antibody in patients presenting with neurological problems thus making a link with gluten sensitivity and coeliac disease as the possible cause of the neurological dysfunction.

This is significant as recent research led by Professor Marios Hadjivassiliou, consultant neurologist at the Trust and published in the Clinical Gastroenterology and Hepatology Journal, showed that two-thirds of newly diagnosed coeliac disease patients had evidence of damage or loss in key sensory areas of the brain even though they had no previous diagnosis or history of neurological problems.

Furthermore, patients who were found to have the anti-transglutaminase-6 (TG6) antibody had notably higher levels of damage in healthy brain cells in specific regions of the brain compared to those without TG6 antibodies.

The test could help hundreds of patients to get vital, earlier diagnosis and treatment of conditions like gluten ataxia.

This could be critical as symptoms such as clumsiness, inability to walk steadily, and a tendency to stumble can be reversed or prevented if patients diagnosed early with gluten ataxia follow a strict-gluten free diet. Ultimately this could be the difference between living with a permanent disability.

Professor Marios Hadjivassiliou, who is a world-leading authority on gluten-related neurological problems and first defined gluten ataxia in the 1990s, said: “We are delighted to be the first NHS Trust in the country to be offering patients this new diagnostic test which detects the presence of the TG6 antibody in patients with neurological presentations and in patients with newly diagnosed coeliac disease.

“Gluten ataxia is the second commonest cause of ataxia and affects up to 25% of people diagnosed with coeliac disease. There is often a ten-year delay between the diagnosis of coeliac disease, at the age of 43, and the diagnosis of gluten ataxia at the age of 53. The good news is that this test provides clinicians with an early opportunity to detect gluten ataxia. Once identified, a strict gluten-free diet should be advocated.”

Over 600 patients with gluten ataxia have been treated at the specialist Sheffield Ataxia Centre, Royal Hallamshire Hospital.

Kathy’s story
Kathy France, 75, of Chapel Brampton, Northampton was diagnosed with cerebellar ataxia five years ago. Since then the condition, which initially caused her to walk to the left, has progressively got worse and she is now wheelchair bound, unable to stand alone let alone walk. Over the past 12 months, she’s noticed a distinct change for the worse, but she was without hope, until a recent breakthrough diagnostic blood test offered by Sheffield Teaching Hospitals NHS Foundation Trust’s specialist ataxia clinic confirmed the link between her ataxia and gluten sensitivity, and given her a way forward.

"I've felt so alone. I used to be really active, walking two or three miles a day, swimming, travelling abroad and enjoying the things most people hate like cleaning and ironing. But now I struggle to do anything.

“The last year I’ve noticed a steady deterioration. I used to be able to hold onto handrails but now I’ve got no balance, I can’t walk, wash or dress or shower on my own. My hands are shaky, and we had to change the car to a wheelchair accessible one as I couldn’t get out the door. It is difficult to travel very far from home as I have to rely on the availability of disabled toilets. My handwriting has deteriorated so much that even I can't read it! I’ve lost all my dignity, but until recently I was told that there was nothing more that could be done for me.”

Fearful of the future and what else she may no longer be able to do in the months and years to come, Kathy, who says she still feels young in mind, scoured the internet to see if there was any specialist support available. A google search led her to the Sheffield Ataxia Centre at Sheffield Teaching Hospitals NHS Foundation Trust. Here she was seen by Professor Marios Hadjivassiliou, a world-leading authority on gluten-related neurological problems and ataxias who offered her a pioneering TG6 diagnostic blood test that checks for the presence of the anti-transglutaminase-6 (TG6) antibody. This test links neurological manifestations such as ataxia to gluten sensitivity.

The test proved positive. This test can be the only marker of gluten sensitivity (as was the case in Kathy) and it is only available in Sheffield. Kathy, who has written all over the world to find a solution, is due to start on a gluten-free diet following a referral to a dietitian.

“I can’t tell you how excited I am to see it in writing that the blood test showed that gluten sensitivity is the problem. To see the Professor and to finally have a way forward is a privilege, and hopefully in 6 to 12 months I shall be feeling better and halt the progress of the disease. This diagnosis means the world to me.”



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