Coeliac disease (CD) is not a food intolerance, it is not a food allergy, and it is not a lifestyle choice. It is in fact an autoimmune condition in which the body, after ingestion of a protein called gluten, found in wheat, barley and rye, starts to attack itself and damage the lining of the small intestine. The symptoms of gluten exposure are wide-ranging and varied across individuals, including failure to thrive, weight loss, nausea, constipation, diarrhoea, bloating, anaemia, and abdominal pain. Over the longer term, untreated CD has been found to be associated with increased risks for osteoporosis, cancer and infertility. The great overlap between symptoms of CD and other health problems is probably one reason that a diagnosis of CD can be slow to be reached and that overall rates of diagnosis (currently one in 100) are thought to be gross underestimates of its actual prevalence.
Currently, there is no cure for the condition; instead, it is managed by behaviour change – individuals are required to adhere to a life-long gluten-free diet, which means that all foods containing wheat, barley and rye have to be completely removed from the diet.
But CD is more than just a change in diet. The process of arriving at and adjusting to a diagnosis of CD can be overwhelming, upsetting and stressful – although for some the diagnosis can come as a relief. The fundamental change in shifting from a gluten-containing diet (and living with uncomfortable and sometimes embarrassing symptoms of the body’s attack against itself) to a gluten-free diet is not to be underestimated: behaviour is hard to change. For all of us, food plays a central role in our lives and is often a conduit for the continuation and strengthening of friend and family bonds. The truth is that most people adapt well to having CD in their lives, however unwanted and uninvited it was. But for others, a different psychology predominates, and the acceptance of CD and the changes it demands is a somewhat more difficult journey to tolerate.
For children and young people, CD and its management can clash with identity formation and fitting in with one’s peers. For parents of children with CD, there can be heightened anxiety and worry, as well as extra vigilance to food, food preparation and cross-contamination, and the need to trust others with the safety of one’s child or children. For adults, there can be issues with changing long-established patterns of now-unhealthy food behaviours. And for all those with CD, being away from home – eating out – is an altogether riskier place, associated with worries about gluten exposure. So, for adjustment, adaptation, acceptance and behaviour change, psychology has much to offer the world of CD.
Numerous anecdotal reports from our research, and published findings, clearly show that people can feel unsupported in their management of CD, both in the journey towards a diagnosis and in the early days, weeks and months post-diagnosis – as well as in the longer term. Poor (or inadequate) knowledge of the condition and low levels of confidence to overcome obstacles in following a gluten-free diet are commonly reported. To help support children and young people, and parents of children trying to manage their child’s CD, our research has led to the creation of two DVD films: the Gut Feelings series, which is available on Amazon. The first film is aimed at young people with CD and includes the stories of nine young people, aged nine to 17, who live with the condition, while the second film is aimed at parents who have a child or children with the condition and features 10 parents talking about their experiences.
Driven by one of the researchers’ own experiences of having a child with CD, this growing area of psychological research, and the willingness of people to participate in both the films and our research, highlights the need for greater psychological awareness within the area of CD. Although medically straightforward in its management, CD can present many challenges to the individual and the family. Only through good dietary self-management can the person with CD maintain good physical and psychological wellbeing – therefore greater support from psychologists within the clinical setting is called for.
Dr Ruth Howard, Senior Academic Tutor, School of Psychology, University of Birmingham
Dr Gary Law, Senior Academic Tutor, School of Psychology, University of Birmingham