What is Coeliac Disease?

Myles Fitt, Scotland Lead, Coeliac UK

Monday, January 16, 2017

People with undiagnosed coeliac disease often find themselves in a community pharmacy seeking medication for symptoms of the condition but which don’t treat the underlying cause. The symptoms are many and can include regular bouts of diarrhoea or loose stools, stomach pains nausea, vomiting, gas and bloating, constipation, regular mouth ulcers, on-going fatigue, and unexplained anaemia.  This means pharmacists are extremely well placed to help identify potential cases of coeliac disease getting more people on the path to a diagnosis and improved health.

This is important as only around a quarter of people thought to have coeliac disease in the UK have a diagnosis. This means that of the estimated 53,000 people with coeliac disease in Scotland, there is an estimated 40,000 people in Scotland - 500,000 people across the UK - currently living with the difficult and damaging symptoms of coeliac disease without realising it. In addition, the average length of time between first onset of symptoms and clinical diagnosis is an incredible 13 years!

Coeliac UK believe it is unacceptable that so many are living in the dark with this condition for such a long a period, impacting on their health and quality of life. To tackle this problem, the Charity launched a major new campaign in 2015 called Is it Coeliac Disease?

Coeliac (pronounced see-liac) disease is caused by a reaction of the immune system to gluten - a protein found in wheat, barley and rye. When someone with the condition eats gluten, the body attacks and damages the lining of the gut where food is absorbed, making it difficult for the body to get the nutrients it needs. Gluten is found in many every day foods such as bread, pasta, cereals, cakes, and biscuits.

People with undiagnosed and untreated coeliac disease can have a wide range of symptoms. These symptoms, combined with lack of nutrition, makes many people just feel rotten. Yet if left untreated, it can lead to serious health problems such as osteoporosis, infertility and, in some rare cases, small bowel cancer. Unfortunately there is no cure or medication, the only treatment is a strict gluten-free diet for life.

Our campaign seeks to make more people aware of the signs and symptoms but it is also aimed at the medical profession so that quick, accurate diagnoses can be made. For example, GPs can find the symptoms of coeliac disease vague and challenging leading to delays in diagnosis. For example, Irritable Bowel Syndrome is often wrongly offered as the diagnosis for people presenting with underlying coeliac disease.

This campaign also looks to engage the help and support of pharmacists.

All over Scotland, pharmacists already do a great job in supplying people with coeliac disease their prescribed gluten-free food products and in providing advice and information with the aim of improving adherence to the gluten-free diet. In addition, pharmacists are also key in identifying individuals in their local community with recurring symptoms of undiagnosed coeliac disease, signposting them appropriately for diagnosis. We know that because some people can view their underlying symptoms of coeliac disease as being minor in nature, they are more likely to visit their local pharmacy for help than bother their GP with the symptoms. As such, pharmacists will come into contact with many people who potentially have coeliac disease and your help will assist us in reaching these people.

We believe community pharmacies across Scotland have a significant contribution to make in getting more people on the road to a diagnosis of coeliac disease through awareness raising, identification of potential symptoms, and signposting to other clinicians. Coeliac UK is currently discussing with Community Pharmacy Scotland how we can take this forward. In the meantime, if you are seeing people with any of the symptoms of coeliac disease and over-the-counter medicines aren’t helping, ask them “Is it coeliac disease?” and direct them to our campaign website