10,000 people in Northern Ireland unknowingly living with an undiagnosed autoimmune disease

There are an estimated 10,000 people in Northern Ireland who are living with undiagnosed coeliac disease - a serious autoimmune condition affecting 1 in 100 people yet only 52% of those affected in Northern Ireland are medically diagnosed. When people with the condition eat gluten - a protein found in wheat, barley and rye - their body attacks its own tissues. If left untreated, it can cause gut damage and serious health complications, however, those who get diagnosed often see a swift improvement in physical and mental wellbeing.

In its campaign, Coeliac UK highlights that coeliac disease can be different for everyone – with symptoms5 ranging from gut issues to neurological complications.

People with undiagnosed coeliac disease can struggle for years with unexplained symptoms causing a negative effect on physical health whilst also causing anxiety and depression. Once diagnosed, most people with coeliac disease can start on the road to recovery, and often see very swift improvements in their symptoms and a sense of relief leading to improved mental health.

Erin, 30, from Coleraine, began experiencing stomach pain, weight loss and fatigue. Initially, she attributed these symptoms to consuming too much wheat.

In 2016, Erin underwent an endoscopy which revealed inflammation, leading her to cut out bread from her diet. Crucially, she was still eatinggluten, which is found in other foods like pasta, and even some sauces and meat products. With persistent pain, another consultant reviewed Erin’s case in 2018, finally resulting in a diagnosis of coeliac disease.

Erin emphasises the importance of being proactive in managing her condition, turning to resources like the Coeliac UK website for guidance: "I didn't fully grasp the concept of cross-contamination until my diagnosis, so I'm immensely grateful for the support and information that has helped me navigate a gluten free lifestyle."

The first step recommended by Coeliac UK for those seeking answers around their unexplained symptoms, is to take its quick and easy self-assessment. This online questionnaire, based on the NICE guidelines, will confirm whether the individual is recommended to speak with their healthcare professional about getting tested and gives people a letter to take to their GP to help with the process.

The self-assessment is available at: www.isitcoeliacdisease.org.uk

Coeliac UK is keen to stress that people should not cut gluten out of their diet without first being tested for coeliac disease. This is because gluten must be in the diet for the body to produce antibodies that are measured in the blood test. Removing gluten from the diet risks a potential false negative result and removing gluten from the diet is not considered healthy unless someone has a diagnosed issue with gluten, an intolerance, allergy, or coeliac disease.

Hilary Croft, Coeliac UK CEO, said: “Coeliac UK is committed to finding the 10,000 people in Northern Ireland with coeliac disease that are yet to receive a medical diagnosis. When someone finally gets an answer to the cause, the positive changes can be momentous – for both their physical health and mental wellbeing. It is so important that we raise awareness of coeliac disease so we can improve diagnosis and get those with undiagnosed coeliac disease on the road to recovery.”

For more information about Coeliac Awareness Month, visit: https://www.coeliac.org.uk/get-involved/awareness-month-2024/