Dr Joe West

2012 Coeliac UK/Guts UK Grant Winner

Title: What is the occurrence and consequence of clinically diagnosed coeliac disease and dermatitis herpetiformis in the UK today? A series of population based cohort studies utilising electronically linked health records

Project Start Date: 1 October 2012

Completion Date: 31 March 2015


To plan health services it is crucial to understand the numbers of people affected by coeliac disease and the health consequences. This information also allows clear and precise information to be given to people with coeliac disease and helps clinicians to focus long term follow up upon complications that matter the most and could be prevented.  The studies we propose to do aim to provide this information.

In terms of occurrence for example, while we have been able to quantify the amount of “undetected coeliac disease” from serology studies we don’t actually know how many people are currently clinically diagnosed and how that varies by age, sex and, perhaps most importantly geographical area and socio-economic status.  We know that the diagnosis of coeliac disease can be delayed through inappropriate labelling of irritable bowel syndrome (IBS), but cannot say what proportion of IBS diagnoses this might apply to.  Older studies suggest that the risk of coeliac disease in offspring of mothers with coeliac disease is about 10% but we do not know if this is reflected in the real world of general practice today.

Moving to the consequences of coeliac disease, it is perhaps surprising that we know that those diagnosed are at increased risk of death, but not what they die from. Equally we do not know how common some of the recognised complications of the disease are, nor how actively the NHS seeks to avoid these. We will therefore examine the certified causes of death of people with coeliac disease.  As an example of an avoidable complication we will determine how common pneumococcal diseases are.