Coeliac Disease
About this PSP
Coeliac UK wanted to make sure that those who live with coeliac disease and those who care for them were able to get involved in setting future research priorities. Work on the Priority Setting Partnership began in early 2017.
The Coeliac Disease PSP Top 10 was published in March 2018.
Impact of Top 10s
Top 10 Priorities
- We need to find the risk factors or triggers to the development of coeliac disease. Do they determine when someone will develop coeliac disease and/or predict how severe disease associated symptoms or complications will be?
- How can healthcare professionals be best supported to accurately diagnose and manage coeliac disease and other gluten related autoimmune conditions to achieve earlier diagnosis and improve patient care?
- What is the spectrum of neurological forms of coeliac disease and how does the neurological dysfunction develop? How are they best diagnosed and managed?
- Are there less invasive tests for recognising coeliac disease and is it possible to accurately test for the disease once gluten has been excluded from the diet?
- How can we better understand the associations between coeliac disease and other conditions, for example, Type 1 diabetes and autoimmune thyroid disease, and what factors influence the risk of developing such conditions?
- What is the best means of follow up management of people with coeliac disease and/or other gluten related autoimmune conditions, including help with sticking to the gluten free diet and prevention of long term health complications?
- What are the best ways to educate people working in the catering/hospitality industry about the gluten free diet to improve safety for people with coeliac disease when eating out?
- How can coeliac disease be cured so that consideration for a gluten free diet is no longer necessary?
- How can coeliac disease and associated complications be prevented in genetically vulnerable individuals, eg using drugs, vaccinations or modification of diet?
- How can we better understand the causes of refractory coeliac disease types I and II and use this understanding to develop and improve diagnosis and treatment?
The following questions were also discussed and put in order of priority at the workshop:
- How will removal of access to gluten free food on prescription affect management and health outcomes of people with coeliac disease?
- How does gut bacteria and/or antibiotics play a role in the development of coeliac disease?
- How can knowledge and understanding across autoimmune / inflammatory diseases be used to advance understanding of coeliac disease and gluten related autoimmune diseases to achieve the best health outcomes for patients?
- What are the best strategies to increase awareness and improve recognition of coeliac disease among the general public to achieve an earlier diagnosis?
- Can a treatment be developed so people with coeliac disease and/ or other gluten related autoimmune conditions can eat an increased level of gluten eg on a special occasion OR to minimise the effects of accidentally eating gluten?
- Are there different mechanisms (apart from vitamin D deficiency and chronic malabsorption of calcium) affecting the development of osteoporosis in coeliac disease and if so what are they and how can our understanding help us to identify and improve outcomes for those at risk?
- What is the prevalence and cause of fatigue in coeliac disease and how can this information be used to reduce its impact?
- What types of mental health issues may be seen in people with coeliac disease both before and after diagnosis, how common are such problems, what are the potential reasons and indications for treatment?
- How can we improve the nutritional status of people with coeliac disease including a review of the benefits / risks of supplementation?
- Is a gluten free diet nutritionally adequate and are there any consequences of being on a gluten free diet long-term, including those with other associated conditions eg Type 1 diabetes?
- What are the benefits and harms of having a national population screening programme for coeliac disease rather than focusing on a risk based approach and what is the best age for screening in this way?
- Can a self monitoring test be developed for people with coeliac disease (and/or another gluten related autoimmune condition) to check they are sticking to a gluten free diet or are being exposed to gluten?
- How much does it cost to produce gluten free substitute foods and can it be reduced?
- How can the accuracy of 'may contain' labelling be improved?
- Can a portable user friendly device be developed to test food and drink and identify if it is gluten free?