A new campaign seeks to identify coeliac sufferers, says Myles Fitt
In May, Coeliac UK, the national charity for people with coeliac disease and dermatitis herpetiformis, launched a major new diagnosis campaign called “Is it coeliac disease?” to reach the estimated 40,000 people in Scotland and estimated 500,000 people in the UK currently living with the difficult and damaging symptoms of coeliac disease without realising it. The campaign also aims to reduce the length of time it takes for coeliac disease to be diagnosed. Currently, the average length of time between first onset of symptoms and clinical diagnosis is a quite incredible 13 years!
Coeliac UK believe it is simply not acceptable that so many are living in the dark with this condition for so long a period.
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 everyday foods such as bread, pasta, cereals, cakes, and biscuits.
While there is no cure for coeliac disease, medication is not required to treat the condition. The only treatment is a strict gluten-free diet for life. The good news is once diagnosed and on a gluten-free diet, people feel much better and their symptoms abate.
It is estimated 1 in 100 of the population has coeliac disease yet only around a quarter have a diagnosis. This means an estimated 52,000 people in Scotland have the condition, with 40,000 living without a diagnosis. This is why our “Is it coeliac disease?” campaign is so important in highlighting the wide range of symptoms of coeliac disease to increase awareness of the condition and lead to an increase in diagnosis.
Coeliac disease symptoms include stomach pains, regular bouts of diarrhoea, on-going fatigue, constant mouth ulcers, nausea, vomiting and anaemia and, in some children, a lack of weight gain and, in children, failure to thrive. These symptoms can affect people in different ways, making it difficult for them to pinpoint the cause and seek diagnosis. Left untreated, coeliac disease can lead to serious health problems such as osteoporosis and unexplained infertility, and in rare cases small-bowel cancer.
Given some of these symptoms are general, they can be easily dismissed. That sore stomach? Just something I ate. That fatigue? Too many late nights. That nausea? One of those things. We want people who are suffering with these symptoms either on their own or in combination with other symptoms as listed on our campaign website www.isitcoeliacdisease.org.uk, to ask themselves – is it coeliac disease? and to take our online assessment.
The online assessment is found on the campaign website and takes you through a questionnaire to determine if you should be tested for coeliac disease. After completing the assessment, you receive a result which you can print out and take to your GP if the assessment highlights the need for further investigation. Encouragingly, since the assessment was launched in the middle of May, over 13,000 people have completed it.
Our campaign is also aimed at the medical profession so that those troubled by symptoms of coeliac disease can get the quick and accurate diagnosis they need. GPs can also find the symptoms of coeliac disease vague and challenging and this can lead to delays in diagnosis. For example, it is estimated that 1 in 4 people with coeliac disease has previously been misdiagnosed with Irritable Bowel Syndrome (IBS). Clinical guidelines from NICE now state that individuals should be screened for coeliac disease before a diagnosis of IBS is made. Coeliac UK will be working hard to increase awareness among GPs so they too will ask themselves when a patient presents with symptoms – is it coeliac disease?
Coeliac disease can be a difficult condition to diagnose, with a wide range of symptoms that, if left untreated, can lead to serious health problems. Our diagnosis campaign aims, by 2020, to free a further 250,000 people across Scotland and the UK from those symptoms, from feeling unwell, and from the long-term risk to their health.
It’s a big ask. But we can get there by starting with another ask – is it coeliac disease?
• Myles Fitt is Scotland Lead at Coeliac UK www.coeliac.org.uk