A patient with a family history of a little known disease caused by sensitivity to gluten has spoken out to make more people aware of the condition.
Isobel Dickinson, 62, of Wadsley, Sheffield, suffers from gluten ataxia – a neurological condition that can affect balance, co-ordination and speech. Until her diagnosis six years ago, little did she know that her difficulty balancing was being caused by sensitivity to gluten.
Isobel is the sixth person in her family to suffer from ataxia (a term referring to the symptom of loss of balance and loss of co-ordination), but is the first to have sensitivity to gluten diagnosed as the cause, thanks to a clinic at the Royal Hallamshire Hospital that is the only one of its kind in the world.
Retired IT specialist Isobel, a mother-of-two, said: “My great grandmother, grandmother, mother, great uncle and uncle all suffered from ataxia – all with very bad problems that severely limited their mobility. In later life, my mother had to use a wheel chair, couldn’t control her legs and was unable to move in bed at all. She knew she had ataxia, but the cause of it was never identified.
“About six years ago, I visited my GP about something completely unrelated to ataxia but happened to mention about my family history. I had begun to feel a bit wobbly on my feet – like I’d had a glass of wine but without the euphoric effect. This was worse when I was tired or when it was dark and I couldn’t see very well. My GP referred me to the Royal Hallamshire Hospital.”
Isobel visited Dr Marios Hadjivassiliou, Consultant Neurologist at Sheffield Teaching Hospitals NHS Foundation Trust, who has established the first clinic in the world specialising specifically on the neurological manifestations of gluten related diseases. Dr Hadjivassiliou and his team diagnosed gluten ataxia after eliminated other possible causes including genetic ataxias.
Isobel continued: "I had no idea that gluten was causing my balance problems. But in addition, I had frequently felt bloated but had no idea why. I had never thought it unusual as my Mum had the same symptoms so I thought they were normal.
“I was told that I would have to go on a strict gluten-free diet. This has meant cutting out a wide range of foods – anything that contains gluten such as wheat, rye or barley. This of course includes bread, pasta, pizza and noodles, but I also have to avoid less obvious foods such as sausages containing rusk, English mustard and anything containing malt vinegar. Also, chocolate often contains wheat, and crisps and nuts can contain gluten in their flavouring.
“I also have to be very careful with cross contamination. My home is almost completely gluten free, but my husband likes his ‘proper’ bread, so we have to make sure no crumbs get left lying around! Eating out can also be difficult as many restaurants don’t take due care to stop cross-contamination.
“Keeping to the diet has been tough but I’ve got used to it. It was just a week or so into my gluten free diet that I began to feel so much better. I’m quite convinced that if I hadn’t gone on the diet I would have deteriorated like my family members did. I feel fitter now than I ever have, and spend a lot of my time enjoying my hobbies such as walking and gardening.
“I’m so grateful to the team that has cared for me – especially Dr Hadjivassiliou and ataxia nurse Diane Friend. They have been fantastic and look after me really well.”
Dr Marios Hadjivassiliou has conducted extensive research into gluten ataxia, first describing the condition in the 1990s. He said: “There is now substantial evidence that sensitivity to gluten can have profound neurological effects. Coeliac disease is still under diagnosed, but perhaps even fewer people know about the neurological manifestations of sensitivity to gluten. Most patients with gluten ataxia do not have a family history but we know that up to 10% of first degree relatives of patients with coeliac disease can also have the condition. The same is true for gluten ataxia.
“Fortunately, in Isobel’s case, she was diagnosed early, and so we have been able to stop her condition from deteriorating and minimize her symptoms, in both her gastrointestinal and neurological systems. She is doing really well on a gluten-free diet.
“It is very important that people with symptoms of ataxia should be screened for sensitivity to gluten the same way that people with gastrointestinal symptoms are screened for coeliac disease. The symptoms do not have to occur together, and in the majority of patients presenting with neurological symptoms the bowel symptoms maybe absent. If a person is found to have sensitivity to gluten then a gluten-free diet needs to be started as soon as possible.”
“I am very fortunate to be working with Professor Sanders, Consultant Gastroenterologist at Sheffield Teaching Hospitals and an international leading expert in the field of coeliac disease. Our close collaboration means that our patients can be assessed both from the neurological and the gastrointestinal perspective, ensuring that the correct diagnosis is made early and that treatment is started as soon as possible. This is particularly important for the neurological manifestations because damage to the balance centre of the brain can be permanent.”