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October Newsletter - Project updates
Psycho-Social Factors in Coeliac Disease
Research is being carried out by a team of researchers at the University of Birmingham on the psycho-social factors affecting people with coeliac disease.
The project, funded by Coeliac UK, explores people's experiences of living with coeliac disease, what they find easy or difficult about it, what they understand about the condition and how they feel about it.
Research that has been carried out in other countries such as Germany and Canada, suggests that some people find living with coeliac disease more difficult than others and that the levels anxiety and depression might be higher in people with coeliac disease than in those without it. To date, there has been very little research conducted in the UK looking at these issues.
Four different groups of people will be looked at:
- Adults with a confirmed diagnosis of coeliac disease
- Young people (over the age of 11 years) with a confirmed diagnosis of coeliac disease
- Parents of children or young people with a confirmed diagnosis of coeliac disease
- Partners / spouses of adults with a confirmed diagnosis of coeliac disease
It is hoped that the results of the study will help to identify some of the reasons why some people find coeliac disease more difficult to live with and how to target help.
Adherence to the gluten-free diet
Coeliac disease is increasingly diagnosed in adults who present with few or no symptoms due to increased screening. Research shows that strict adherence to the gluten-free diet ranges from 36 to 96%.
A recent literature review paper investigated the factors associated with adherence to a gluten-free diet in adults with coeliac disease. The literature search found 38 relevant studies. These studies looked at a range of demographic, illness, treatment, psychological and cultural factors.
Research studies in this review found that non-adherence was higher among adults diagnosed in childhood than in those diagnosed in adulthood. There was no consistent association found between gender and adherence.
There is an association between an individual’s attitude towards their coeliac disease and adherence to the diet. People with concerns about the exposure to gluten and the effect on their health were more likely to adhere to the diet. People that had feelings of anger towards being diagnosed with coeliac disease were less likely to adhere to the diet.
One study found that people with more severe symptoms before treatment were more likely to have better dietary compliance. This however has not been confirmed statistically.
One UK based study found that understanding food labelling, affordability and obtaining gluten-free foods on prescription were all important in adhering to the diet.
A clinical audit found that annual review with a dietitian-led coeliac clinic can significantly improve adherence.
Membership of a patient support group may also be associated with better compliance to the gluten-free diet. Studies that have recruited from patient support groups have shown higher adherence rates.
Understanding the factors associated with non-adherence is important in terms of supporting people diagnosed with coeliac disease. Further and more robust research is needed to determine which individuals are most likely to have problems adhering to the diet to help assist them better with their treatment.
Hall N, Rubin G, Charnock A (2009) Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. Alimentary Pharmacology & Therapeutics 30, 315-330
Long term health and quality of life
Untreated coeliac disease is associated with long term health complications including osteoporosis, anaemia, delayed puberty and growth impairment. A prospective 10 year follow up study investigated whether detection of childhood coeliac disease by mass screening improves long term health status and quality of life.
After mass screening of 12,672 children aged 2-4 years at a child health centre in Holland, 32 children were diagnosed with coeliac disease. The 32 children identified were followed up in a prospective study from 1998-2007. The children were followed up for their general health, coeliac disease related symptoms and health related quality of life.
At the time of diagnosis, 19 of the 32 children started a gluten-free diet and 13 continued their normal gluten-containing diet. After 10 years, 26 of the children were following the gluten-free diet.
At diagnosis 13 of the children had symptoms of diarrhoea, abdominal pain, constipation, chronic fatigue, irritability and oral ulcers. After following the diet for 1 year, all the children showed improvement in their symptoms. A further 8 of the children developed symptoms after diagnosis as a result of including gluten in their diet. Symptoms cleared after gluten was removed from the diet.
Also, 7 of the children had an improvement of symptoms including failure to thrive and osteoporosis after starting the gluten-free diet. However, these children developed other health problems including constipation. This could be due to factors unrelated to their coeliac disease or due to reduced fibre in the gluten-free diet. The overall health status improved as the other health problems were less severe.
Long term follow up studies are required to assess possible long term consequences in people with untreated coeliac disease with no symptoms.
Quality of Life
Using the DUX-25, the health related quality of life of the children with symptoms was found to be lower than the general Dutch population at diagnosis. However, their quality of life improved significantly after diagnosis.
Screening for coeliac disease
Mass screening resulted in health improvements in 21 of the 32 children in this study.
Van Koppen E, Schweizer J, Csizmadia C, et al (2009) Long-term health and quality of life consequences of mass screening for childhood celiac disease: a 10year follow-up study. Paediatrics 123, e582- e588