A specialist centre which aims to better understand unpredictable signs and symptoms of a common gut disorder has been established in Sheffield.
The Sheffield Institute of Gluten-Related Disorders (SIGReD) brings together some of the world’s most distinguished researchers and academics who will collaborate on pioneering work into how the diagnosis of coeliac disease could be improved through increased recognition of symptoms not always connected to the bowel.
Coeliac disease is an autoimmune disease caused when the body’s immune system reacts to gluten found in wheat, rye and barley. If left untreated, it can cause serious health problems. The only known treatment is by a lifelong strict adherence to a gluten-free diet.
One in 100 people are affected by coeliac disease - but for every one patient diagnosed because of bowel symptoms, eight remain undiagnosed.
The SIGReD has been set up by Marios Hadjivassiliou and Dave Sanders from the University of Sheffield and the departments of neurology and Gastroenterology at Sheffield Teaching Hospitals NHS Foundation Trust.
Mike Davidson, 65, of Dronfield only discovered he had the disease after being told he couldn’t donate blood any more. "Like most people I hadn’t heard of coeliac disease and didn’t have a clue about gluten-free diets," he said.
"But I was lucky as I went to give blood and they said I could no longer do so because I was anaemic. This led to a whole series of tests and I was diagnosed with the disorder in my early fifties, but some people can be really ill with it and never know they have the illness.
"After a period of time on a gluten-free diet my condition improved and I was able to resume being a blood donor."
Since then Mike has been advised by dieticians on what he can and can not eat.
"Sometimes it can be a bit depressing as you’ve always got to plan ahead," added Mike, who now runs Coeliac UK’s Sheffield self-help group.
"I even have to know which fish and chip shops serve gluten-free batter, so it’s great that this specialist centre in Sheffield has been set up as it will further help raise awareness of the disease."
Marios Hadjivassiliou, a consultant neurologist for Sheffield Teaching Hospitals NHS Foundation Trust, said: "We’re delighted to be launching the Sheffield Institute, which brings together some of the world’s leading authorities in gluten-related diseases.
"The Institute will bring together global expertise so that we can share learning, encourage collaboration and innovation and become a research powerhouse with the aim of improving the diagnosis and care for hundreds of people who may be living with this disease undiagnosed."
Dave Sanders, a consultant gastroenterologist for Sheffield Teaching Hospitals NHS Foundation Trust, added: "Patients will also be able to benefit from newer tests which may improve the diagnosis of those with symptoms that are not associated with the bowel as well as patients who have so-called ’non-coeliac gluten sensitivity’, when they have an almost normal small bowel biopsy but still seem to improve with the diet."
The SIGReD is currently putting together an application to the National Institute for Health Research for a five-year programme grant looking at better ways to diagnose the whole spectrum of gluten related-diseases.
The coeliac disease clinic at Sheffield’s Royal Hallamshire Hospital is the largest centre for gluten-related diseases in the UK. Professors Marios Hadjivassiliou and Dave Sanders have both received international recognition for their work. Over the past ten years, members of the SIGReD have published over 100 scholarly articles on the subject, and won prestigious clinical and research awards from Coeliac UK, Ataxia UK, the Nutrition Society and the European Gastroenterology Association.
SIGReD members include: Professor Nicola Woodroofe, a neuroimmunologist at Sheffield Hallam University, Professor Simon Cross, histopathologist with a particular interest on bowel histology in coeliac disease of the University of Sheffield, Professor Daniel Aeschlimann of Cardiff University, a leading scientist in transglutaminases (the enzymes involved in gluten related diseases), William Egner, consultant immunologist at Sheffield Teaching Hospitals NHS Trust, with expertise in serological testing for the diagnosis of coeliac disease and Andrew McDonagh, consultant dermatologist at Sheffield Teaching Hospitals NHS Trust with expertise in the skin manifestations of sensitivity to gluten.
The group is also set to benefit from the involvement of Nigel Hoggard, senior lecturer in neuroradiology at the University of Sheffield who recently published a groundbreaking study on brain imaging in patients with Coeliac Disease entitled ’Should we be nervous about coeliac disease? Brain abnormalities in patients with coeliac disease referred for neurological opinion’.