More than just a change in diet: the challenge of Coeliac Disease for parents and how to survive it
From birthday parties to our daily breakfast, food plays a central role in our friendships and family lives. As we are inundated with Christmas markets and high definition adverts for festive foodstuffs, it is can be difficult and stressful for children managing Coeliac Disease, and their families.
Researchers from the University of Birmingham are keen to explore ways in which more support can be provided to parents, in a way that understands the complex psychological effects of managing their child’s gluten free diet on a daily basis.
Coeliac Disease is an auto-immune disorder triggered by the presence of gluten, which leads to an immune response which damages the small intestine. Gluten is a broad term for proteins found in crops such as wheat, barley and rye. People with the condition experience a range of symptoms of differing severities; including abdominal pain, weight loss and exhaustion.
In the UK, around 1 in every 100 people has Coeliac Disease – although diagnosis of those with the disorder is worryingly low.
Dr Ruth Howard, from the School of Psychology, explained, “Having your child diagnosed with Coeliac Disease can feel a lot like a journey. And a lot of the parents we talked to say that the road to diagnosis alone was a really difficult experience. They often feel frustrated by primary care who often mis-diagnose the condition, and this is exacerbated by a sense of guilt when they find out what’s wrong with their child. It’s the idea that ‘I should have known’ and wishing that you could somehow take the condition away from your child, were it possible”.
After diagnosis, there can be a lot of stress and anxiety that comes with having to adapt family life, particularly around mealtimes. Gluten free food is improving, but there is still a limited choice and there is an issue with the cost. Staple gluten free foods can be obtained on prescription, but most foodstuffs are around four times more expensive than their ordinary equivalent. According to Coeliac UK, this may cause difficulties for families on low incomes to maintain their child’s diet.
Eating out brings further concerns around exposure; and an uncertainty around whether or not a restaurant is truly gluten free.
Dr Gary Law added, “It can be really hard for a family in this situation. Managing your own condition is tough; managing that of your child always heightens anxiety. The shift that people have to make to adjust can be considerable and we wanted to create a resource that can really help to support parents through this.”
The team have today (9th December) launched their second film created to support and inform parents coping with their child’s Coeliac Disease.
Dr Howard continued, “We know that Christmas can be especially difficult for parents. There’s so much that you worry about, party food can be a real concern – but you can feel a constant burden of guilt that comes with feeling as though you are restricting your child from being able to ‘fit in’ with friends and peers.”
“Our goal is to provide parents with more access to information about Coeliac Disease, so that they can understand the condition. It’s about knowledge, but also about sharing some ideas from those who’ve been along the same journey.”
Notes to editors
For interview requests or for more information, please contact Luke Harrison, Media Relations Manager, University of Birmingham on +44 (0)121 414 5134.
For out of hours media enquiries, please call: +44 (0) 7789 921 165
The first film was funded through an ESRC knowledge transfer grant. The second film was funded by Warburton’s Bread under the brand of Newburn Bakehouse by Warburton’s, their dedicated gluten-free bakery.
The film will be launched at 6pm on Tuesday 9 December at Alta Innovations, Edgbaston, Birmingham.