An innovative new website has been launched by leading healthcare organisations and charities to provide answers and a diagnosis for ongoing, unexplained, and often misdiagnosed gut problems. It’s designed to support healthcare professionals, like GPs, make an informed diagnosis and help people experiencing gut issues understand what the cause of their problems may be.
Every day, people throughout the UK visit their GP to find out why they have gut problems, with many cases being unexplained. People can spend years suffering with symptoms, such as diarrhoea, constipation, vomiting, and stomach cramps before getting diagnosed – unable to find a treatment for their gut issues.
Whether it’s coeliac disease, irritable bowel syndrome (IBS), Crohn’s disease, colitis or another condition, getting a diagnosis can be complicated and overwhelming. The What’s Up With My Gut website is a tool to make the pathway to diagnosis clearer – both for healthcare professionals and patients.
The website is a partnership of gut-related charities, including Coeliac UK and Crohn’s & Colitis UK, healthcare professional organisations and patients, using evidence-based, expert information to improve the speed and accuracy of diagnosis of gut problems.
Around 13 million people in the UK are thought to be affected by IBS, with many cases undiagnosed. Crohn’s disease or ulcerative colitis is estimated to affect around 1 in 123 people or 0.81% of the UK population, and research suggests that prevalence is rising.
Coeliac UK, the national charity for people with coeliac disease, estimates there are 500,0001,2 people in the UK living with undiagnosed coeliac disease and suffering with debilitating consequences. When people with coeliac disease eat gluten – a protein found in wheat, barley and rye – their body attacks its own tissues, which in the long-term, can cause a range of secondary conditions including osteoporosis, subfertility, miscarriages, and small bowel cancer. Adults with coeliac disease take 13 years on average to be medically diagnosed. The long-term effects of suffering with undiagnosed or misdiagnosed gut-related conditions can be serious, and the time and resources needed to treat these long-term effects add pressure to health services.
For example, as people with undiagnosed coeliac disease are at greater risk of osteoporosis and bone fractures due to malabsorption, compared to the general population this puts pressure on our health services that could be avoided by early diagnosis. The average cost to the NHS of an osteoporotic hip fracture is £27,0003 the equivalent to more than a lifetime’s supply of gluten free prescribing for the majority of people. Undiagnosed coeliac disease also incurs greater costs in primary care due to repeated visits and tests 4.
Heidi Urwin, Director of Evidence & Policy at Coeliac UK, said: “If you have problems with your gut, not knowing the steps your GP may take or what will happen next can be stressful. It can also be difficult for healthcare professionals to always know the current best practice. The ‘What’s Up With My Gut’ website aims to remove these worries and doubts, for both the patient and healthcare professional, and get those suffering with gut issues the answers they desperately need.”
The website is designed to support healthcare professionals to shorten time to diagnosis, reduce variation and improve adults’ experiences of care. The resources and guides are based on best practices according to current guidelines and is endorsed by the Royal College of General Practitioners. It provides information on possible presenting symptoms, red flags for cancer, conditions to consider, investigations to consider, referral pathways for secondary care, and safety-netting.
Jess Turner, Health Services Manager, Crohn’s and Colitis UK, said: “ For people trying to get a diagnosis or parents of children with gut problems, the website provides step-by-step guides to support and empower them to understand the actions their GP will take. For healthcare professionals, the website provides clear pathways to help patients get a diagnosis. It has been endorsed by the Royal College of General Practitioners (RCGP). Following these guidelines can help to shorten the time to diagnosis, reduce variation among healthcare professionals and improve patient’s experiences of care.”
David Sanders, Professor of Gastroenterology at The University of Sheffield, an NHS consultant based in The Academic Unit of Gastroenterology and a specialist in coeliac disease, remarked that: “This is a good initiative, and another way to test for coeliac disease, particularly as the Lower GI Pathway involves surgical practitioners who might otherwise miss coeliac disease.”
Coeliac UK is keen to stress that people should not cut gluten out of their diet without first being diagnosed with coeliac disease. This is because gluten must be in the diet for the body to produce antibodies that are measured in the blood test, and removing gluten from the diet risks a potential false negative result. Contributors to the What’s Up With My Gut website include The British Society of Gastroenterology (BSG), The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN), The Association of Coloproctology of Great Britain and Ireland (ACPGBI), Coeliac UK, Crohn’s & Colitis UK, Crohn’s in Childhood Research Association (CICRA), Guts UK and The IBS Network.
Visit the What’s Up With My Gut microsite here: whatsupwithmygut.org.uk
