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Early recognition of coeliac disease in community pharmacy

Coeliac UK the national charity for people with coeliac disease, announces the publication of an innovative project using community pharmacies to assist in finding patients with undiagnosed coeliac disease.


Coeliac UK the national charity for people with coeliac disease, announces the publication of an innovative project using community pharmacies to assist in finding patients with undiagnosed coeliac disease.


The findings indicate that if the approach was embraced by the NHS, it could speed up diagnosis and lift woefully low diagnosis rates by targeting those suffering the most common symptoms of coeliac disease for testing.  The approach also has the potential to reach people earlier and reduce the number, and therefore, the cost of repeat GP appointments.

The proof of concept project, funded by Coeliac UK, supported by Tillotts Pharma Ltd., Rowlands, Jhoots, Cranston Pharmacy and Pinnacle Health Partnership LLP. It was project managed by the National Association of Primary Care (NAPC) and published in August 2016 in the International Journal of Clinical Pharmacyand investigated the use of 15 community pharmacies for active case finding of patients with coeliac disease.

Over a six-month period, people who were accessing over-the counter and prescription medicines indicated in the treatment of  IBS, diarrhoea, other general gastro-intestinal problems and anaemias were offered a free point of care test to check for antibodies produced in coeliac disease, provided by Tillotts and administered by trained staff in the pharmacy.

Of the 551 individuals tested, 52 (9.4 %) were given a positive result, potentially indicating coeliac disease as the cause of their symptoms. All patients were given advice regarding the test results and those who tested positive were advised to make an appointment with their general practitioner.

Of 43 customers who returned the satisfaction survey, all would recommend the service to others, believing the community pharmacy to be a suitable location for testing. Community pharmacists believed that it enabled them to improve relationships with their customers and that medical practices were receptive to the service.

One in 100 people in the UK has coeliac disease, but only 24% of those with the condition have been diagnosed. There are an estimated half a million people in the UK who have the condition yet don’t know it, and it’s something the charity is trying to tackle with their ‘Is it coeliac disease?’ campaign. This study to test the viability of using community pharmacies to find those coping with the symptoms of undiagnosed coeliac disease is part of this campaign and provides innovative solutions to improve the recognition of coeliac disease in line with the Government’s ambitions for improved flexibility in primary care and far greater use of pharmacists.

Sarah Sleet, chief executive of Coeliac UK, said: “We are thrilled with the results of the study which clearly shows the importance and value of utilising the expertise of community pharmacists. However, we are worried that the announcement by the Government to significantly cut funding to community pharmacists and the barriers imposed by the inflexibility of NHS structures, will impede the wider introduction of this approach. The direct costs associated with undiagnosed coeliac disease are increased visits to the GP, use of medicines for symptomatic treatment, increased investigations and referral which all cost the NHS more in the long run, while the patient pays the price of reduced quality of life as misdiagnosis can mean an average wait of 13 years to get diagnosed.”

James Kingsland OBE, President of NAPC who supported the project, said: “Traditionally the identification and implementation of targeted screening has solely been the role of primary care physicians. They are however only able to identify patients who present to them for treatment and advice. It is more usual for patients with general gastrointestinal symptoms to self-treat with therapy which is available from pharmacies and supermarkets which is why community pharmacists are ideally placed to offer the finger prick testing, along with information and advice for those customers and help find the missing half a million people in the UK currently undiagnosed with coeliac disease and get them onto their diagnosis journey.”

Coeliac disease is a serious autoimmune disease caused by a reaction to gluten.  When gluten (a protein found in wheat, rye and barley) is eaten, damage to the gut lining occurs. There is no cure or medication for the condition; the only treatment is a lifelong, strict gluten-free diet. If someone with coeliac disease doesn’t stick to a gluten-free diet, or has a delayed diagnosis, the disease can lead to other conditions such as malnutrition, osteoporosis and small bowel cancer. It is however important that gluten is not removed from the diet before or during investigations for coeliac disease.

The corresponding author of the published paper is Professor David Wright from the University of East Anglia. The Pharmaceutical Services Negotiating Committee, Royal Pharmaceutical Society and Pharmacy Voice were also members of the steering group.

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