Coeliac UK’s Awareness Week campaign ‘coeliac disease is different for everyone’ aims to provide answers to those who are experiencing unexplained and often debilitating symptoms. For the estimated 500,000 people1 in the UK who are undiagnosed, a simple blood test is the first step that stands between them and getting on the road to recovery. Coeliac Awareness Week runs from 15-21 May.
The Coeliac Awareness Week campaign looks beyond the typical gut symptoms of coeliac disease and highlights the lesser-known symptoms that can help to join the dots to speed up the path to diagnosis. The charity’s mission for the campaign is to increase awareness and reduce the time it takes to get diagnosed, which for adults can often be 13 years, whilst they continue to experience persistent health issues, potentially causing lasting damage.
New research2 highlights the lack of awareness of some of the symptoms, with 93% of UK adults unaware that subfertility or recurrent miscarriage are symptoms of coeliac disease. 88% are unaware of mouth ulcers, while 70% aren’t aware of iron, vitamin deficiency or anaemia as a symptom.
For most people, once diagnosed with coeliac disease they can start on the road to recovery, and often see very swift improvements in their health. 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 three minute online questionnaire, based on the NICE guidelines,3 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. The self-assessment is available at: www.isitcoeliacdisease.org.uk.
However, 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, or the test won’t work and could give a false negative result.
Hilary Croft, Coeliac UK CEO, commented: “When someone who has been experiencing coeliac disease symptoms finally gets an answer to the cause, the positive changes can be momentous. We’ve seen some people struggle with symptoms of coeliac disease for decades, unaware that there is a treatment, a medically prescribed gluten free diet. However, awareness still needs to be increased, with more than a quarter2 (26%) of the UK population reporting to have never heard of coeliac disease. This increases to over 75% for the lesser-known symptoms, despite them being key indicators that something is not quite right and that the person may have undiagnosed coeliac disease.
“There are many more symptoms of coeliac disease than the usual gut related issues, and the condition is different for everyone. Through our Awareness Week campaign, we aim to reach the estimated half a million people living with undiagnosed coeliac disease and help them to get on the road to recovery.”
For more information about Coeliac Awareness Week, visit: https://www.coeliac.org.uk/awareness-week-2023/.
1 Source data from West et al. (2003) Seroprevalence, correlates and characteristics of undetected coeliac disease in England Gut 52; 960-65 and Bingley P J et al. (2004) Undiagnosed coeliac disease at age seven; population based prospective birth cohort. BMJ 325; 322-23, calculation by Coeliac UK, using ONS population estimates for year 2021.
2 All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 4,461 adults. Fieldwork was undertaken between 13th – 17th April 2023. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).
3 NICE guidelines: https://www.nice.org.uk/guidance/ng20.