Kathy Oxtoby looks at how pharmacies can support patients with coeliac disease…
Coeliac disease is a common chronic autoimmune disease that is often overlooked or misdiagnosed, potentially leading to decreased quality of life.1
With a prevalence of one in 100, hundreds of thousands of people in the UK have coeliac disease. But according to the charity, Coeliac UK, only 30 per cent of people with the condition have been diagnosed, meaning there are half a million who don't know they have it and may still be struggling with unexplained symptoms.2
Reported cases of coeliac disease are around three times higher in women than men. The condition can develop at any age, although symptoms are most likely to develop during early childhood between 8 and 12 months old, or in later adulthood – between 40 and 60 years of age.
Pharmacists can help by identifying those who may have coeliac disease, as well as providing information about gluten-free pharmaceutical products and foods, and encouraging sufferers to maintain a gluten-free diet after diagnosis.3
Support patients “with compassion”
Lila Thakerar, superintendent pharmacist at Shaftesbury Pharmacy, Harrow, says it is important for pharmacists to support these patients “with compassion”, and to help signpost them to further help if needed, such as dieticians, or support groups.
Coeliac disease is a serious illness where the body’s immune system attacks its own tissues when gluten, a dietary protein found in wheat, barley and rye, is eaten. This causes damage to the lining of the gut and means the body cannot properly absorb nutrients from food. Coeliac disease is not an allergy or a result of food intolerance.2
It is not entirely clear what causes the immune system to act this way, but a combination of genetics and the environment appear to be involved. 4 If a first-degree family member has the condition, then the chances of someone having it increase to one in ten. 2
Symptoms range from mild to severe, and can include bloating, diarrhoea, nausea, flatulence, constipation, tiredness, mouth ulcers, sudden or unexpected weight loss (but not in all cases), and anaemia.2
Coeliac disease can also cause more general symptoms, including tiredness as a result of not getting enough nutrients from food, an itchy rash, infertility, nerve damage and disorders that affect co-ordination, balance and speech. Children with coeliac disease may not grow at the expected rate and may have delayed puberty.4
Because of the way that coeliac disease can affect the gut, it's frequently misdiagnosed as IBS.2
Ms Thakerar says ‘red flags’ that could indicate a patient has coeliac disease is if they are presenting regularly at the pharmacy with symptoms like intermittent diarrhoea and constipation. “These cases may need investigating and pharmacists should refer patients to their GP,” she says.
Testing is recommended for people who have an increased risk of developing coeliac disease, such as those with a family history of the condition. 4 NICE advises testing for coeliac disease should also include people with persistent, unexplained abdominal or gastrointestinal symptoms, unexpected weight loss, severe or persistent mouth ulcers, unexplained iron, vitamin B12 or folate deficiency, type 1 diabetes (at diagnosis), autoimmune thyroid disease (at diagnosis), and irritable bowel syndrome (in adults).5
There is no cure for coeliac disease but following a gluten-free diet should help control symptoms and prevent the long-term complications of the condition.4
Even if patients have mild symptoms, changing their diet is still recommended because continuing to eat gluten can lead to serious complications, including osteoporosis, iron deficiency anaemia, and vitamin B12 and folate deficiency anaemia.4
Living with coeliac disease
People living with coeliac disease may need to take supplements if their dietary intake of vitamins and minerals is insufficient.5 Due to decreased absorption of calcium, adults with coeliac disease are also at a greater risk of low bone density (osteopenia) and osteoporosis. 2 “Pharmacists can advise on what supplements patients with this condition could take, such as iron, B12 , calcium or cod liver oil, helping them to live healthier lifestyles,” says Ms Thakerar.
People with coeliac disease will need to avoid gluten for life. This means avoiding any foods that contain wheat, barley and rye cereals. Barley squashes, beer, lager, stout and ales are not suitable drinks for people with this condition.2
It is important for a gluten-free diet to be healthy and balanced. In recent years, an increase in the range of available gluten-free foods has made it possible to eat a gluten-free diet that’s both healthy and varied. 4
All types of rice, potato, corn, plain meat, fish, eggs, cheese, milk, most yogurts, fruits, vegetables and pulses are naturally gluten-free and are suitable for the diet. This diet can also include processed foods which do not contain gluten, such as ready meals and soups.2
There are also gluten-free substitute foods available, such as specially made gluten free bread, flour, pasta, crackers and biscuits. These are available in the ‘free from’ section of supermarkets and health food stores. Gluten free bread and flour mixes are also available on prescription for some people.2
Pharmacies can be a reliable source of advice to patients and their families on maintaining a gluten-free diet. “Pharmacists can talk about product choices and what’s available on prescription. And they can advise on new products, which are introduced onto the market all the time,” says Ms Thakerar.
According to Coeliac UK, “some people feel significantly better within a few days of cutting out gluten, but some may see more of a gradual improvement in their symptoms or that one symptom improves before another”.2
People living with this condition should be advised that it can take between six months and up to five years – and in some cases longer - for the gut damage caused by eating gluten to fully heal. Several factors are thought to be involved in the variable time taken for the healing process, including age and severity of gut damage at diagnosis.2
If a patient’s symptoms do not improve or become worse having started a gluten-free diet, pharmacists can advise that they speak to their GP, dietitian and/or gastroenterologist.2
Ms Thakerar believes pharmacists have a significant role to play, not just supporting patients with coeliac disease but also their entire family. “We can support them with their symptoms, give information on products available, with or without prescription, and advise on diet and lifestyle. We can signpost them to local support groups. And we can give this advice with compassion and understanding.”
Coeliac UK: https://www.coeliac.org.uk/home/
NHS Health A-Z https://www.nhs.uk/conditions/
1 Avena-Woods C et al. (2018) Exploring the Community Pharmacist’s Knowledge of Celiac Disease. American Journal of Pharmaceutical Education. 2018 Mar; 82(2): 6353. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869756/
2 Coeliac UK. https://www.coeliac.org.uk/home/
3 Mangione RA, Patel PN. (2008) Caring for patients with celiac disease: the role of the pharmacist. Journal of the American Pharmacists Association. 2008;48(5):e125–135. https://www.japha.org/article/S1544-3191(15)31147-X/fulltext
4 NHS (2019) Coeliac disease. https://www.nhs.uk/conditions/coeliac-disease/
5 NICE (2015) Coeliac disease: recognition, assessment and management. NICE guideline [NG20]. https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac-disease