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The average length of time from onset of symptoms to a diagnosis of coeliac disease is 13 years, but there is plenty pharmacists can do to help raise awareness of the condition and reduce this timescale

IN MAY 2014, research undertaken at the University of Nottingham and published in the American Journal of Gastroenterology found a four-fold increase in the rate of diagnosed cases of coeliac disease in the UK over the past two decades. However, the researchers also found that three-quarters of people with the condition remain undiagnosed. According to Coeliac UK, one in 100 people in the UK have currently been diagnosed with coeliac disease, with the prevalence rising to one in 10 for close family members.

“This latest research gives an up-to-date picture of the diagnosis levels across the UK and shows that nearly a quarter of people with coeliac disease have now been diagnosed,” says Sarah Sleet, chief executive of Coeliac UK. “Of course, increasing numbers with a diagnosis is good news and will inevitably mean that there will be an increased demand for gluten-free products in supermarkets. But the three-quarters undiagnosed is around 500,000 people – a shocking statistic that needs urgent action.”

Common symptoms

Coeliac disease is an autoimmune condition caused by an intolerance to gluten (a protein found in wheat, barley and rye). Some people are also sensitive to oats. The body’s immune system mistakenly identifies gluten as harmful and attacks the protein. This damages the small intestine, causing various symptoms, and reduces the body’s ability to digest nutrients from food.

Coeliac disease symptoms range from mild to severe and are often misdiagnosed as irritable bowel syndrome or wheat intolerance. Some of the more non-specific symptoms are put down to stress or simply getting older, as many people are between 40 and 50 years of age when they are diagnosed. Symptoms of coeliac disease can include bloating, abdominal pain, nausea, constipation, diarrhoea and wind, as well as fatigue, anaemia, headaches, mouth ulcers, weight loss, skin problems, depression, and joint or bone pain.

Dermatitis herpetiformis (DH) is a skin condition linked to coeliac disease, affecting around one in 10,000 people in the UK. It causes a distinctive rash with red, raised patches, usually with blisters, and is most often found on the elbows, knees, shoulders, buttocks and face. Like coeliac disease, DH is due to gluten intolerance. That said, at least 60 per cent of people with DH don’t have gut-related symptoms.

People with type 1 diabetes should be screened for coeliac disease on diagnosis

Early diagnosis

According to Norma McGough, director of policy, research and campaigns at Coeliac UK, pharmacists are well placed to identify people with possible symptoms of coeliac disease and steer them to their GP for further testing.

“People often go to a pharmacy complaining of digestive symptoms such as diarrhoea, pain and vomiting,” she says. “Pharmacists should keep coeliac disease in mind if these symptoms persist or are severe. They should also be aware of customers coming back for the same OTC medicines, such as antidiarrhoeals or iron supplements. Anaemia is a common symptom of coeliac disease and should be investigated.”

Pharmacists should also look out for people with a family history of coeliac disease or associated problems like autoimmune disorders or osteoporosis, she says. “There may also be customers who have been given a diagnosis of irritable bowel syndrome by their GP without being referred for any investigations.”

Katie Kennedy, company dietitian at Glutafin Gluten-free Foods, says that people with type 1 diabetes should be screened for coeliac disease on diagnosis. “Between 2 and 10 per cent of people with coeliac disease will also have type 1 diabetes,” she says. “Coeliac disease is commoner in people who have type 1 diabetes because they are both autoimmune diseases. Some people with type 1 diabetes appear to have mild or no obvious symptoms of coeliac disease, but their gut lining will still be damaged when they eat gluten.”

It is vital that coeliac disease is diagnosed as early as possible. Left untreated, it can lead to infertility, osteoporosis and malnutrition, and raises the risk of small bowel cancer. Coeliac disease is usually diagnosed with a simple blood test, followed by a gut biopsy. However, occasionally the blood test is negative even though coeliac disease is present. Testing is only accurate if customers continue to eat gluten in more than one meal every day for at least six weeks prior to testing.

“The blood tests through GP surgeries are very reliable – around 95 per cent sensitive – and these are specific to coeliac disease,” says Norma McGough. “However if someone has already switched to a gluten-free diet, the test may not give accurate results, as cutting out gluten removes the antibody markers. Also, around 2 per cent of coeliac disease sufferers are IgA-deficient, so the test results need careful interpretation.”

It is vital that coeliac disease is diagnosed as early as possible

 

Gluten-free diets

The only treatment currently available for coeliac disease is following a strict gluten-free diet for life. Poor compliance can result in deficiencies of various nutrients including essential fatty acids, iron, vitamin D, vitamin K, calcium, magnesium, folic acid and zinc. It is important that people with coeliac disease meet their dietary calcium requirements to reduce their risk of osteoporosis.

Tony Cartwright, retired pharmaceutical regulatory consultant and coeliac disease sufferer, says that adherence to a gluten-free diet is often poor. (According to Coeliac UK, research by Kings College London has shown that gluten-free staple foods are 76 to 518 per cent more expensive than their equivalents containing gluten.)

Gluten can be difficult to avoid, as it is often hidden in a wide range of everyday foods

 

“A large proportion of people with coeliac disease are women pensioners or people on low incomes,” he says. “They can’t afford to buy gluten-free food from supermarkets or they rely on local shops, which don’t stock a wide range of products, if at all. Improving access to gluten-free foods is essential to help people stick to their diet, improving overall compliance and reducing the risk of complications.”

Coeliac UK’s 2014 awareness campaign – the ‘Gluten-free Guarantee’ – aims to improve the availability of gluten-free foods in stores of all sizes across the UK. In June, the charity launched a new app called ‘Gluten-free on the Move’, which is intended to help people follow a gluten-free diet. The app includes access to Coeliac UK’s extensive food and drink directory, containing nearly 10,000 products suitable for a gluten-free diet, and enables users to scan items as they shop to see if they are listed in the directory.

Gluten can be difficult to avoid, as it is often hidden in a wide range of everyday foods. All patients should be referred to a dietitian on diagnosis to make sure that they receive individual advice and a step-by-step plan on how to completely remove gluten from their diet. “It is important to remind patients to look out for gluten in less obvious food products, such as soy sauce, ready meals and soup,” says Katie Kennedy. “When newly diagnosed, it can seem that everything is off the menu, so healthcare professionals should be prepared to direct patients to services that provide gluten-free meal planners and information.”

In the UK, gluten-free staple food items, such as bread, rolls, flour mixes, crackers and breakfast cereals, can be obtained on prescription from a GP or via one of the various local pharmacy supply schemes. National prescribing guidelines make recommendations on the amounts of gluten-free staple foods each patient can expect to receive on prescription each month, usually based on their age and gender.

“Pharmacists are integral in helping those already diagnosed to keep to their gluten-free diet and assist with the provision of their gluten-free food on prescription,” says Norma McGough.

“They can also provide information to those experiencing the symptoms associated with coeliac disease and signpost to their doctor for relevant investigations.”