Myles Fitt explains why a new campaign aims to raise awareness of the symptoms of coeliac disease, which is undiagnosed in as many as 40,000 Scots
It’s Coeliac UK’s Awareness week from 11-17 May, and the charity is embarking on a major new campaign to reach the estimated 40,000 people in Scotland and estimated 500,000 people in the UK who are currently living with the unpleasant 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 an incredible 13 years!
Coeliac UK believe it is simply not acceptable that so many are living in the dark with this disease 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 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 such as 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. These symptoms, combined with a lack of nutrition, makes many people just feel rotten. Yet if left untreated, it can lead to serious health problems such as osteoporosis and in some cases small bowel cancer.
Unfortunately there is no cure or medication, the only treatment is a strict gluten-free diet for life. But the good news is once diagnosed and on a gluten-free diet, people feel much better and their symptoms abate.
Yet of the 52,000 people in Scotland estimated to have coeliac disease, only around a quarter have a confirmed diagnosis. This means nearly 40,000 are living with the unpleasant and damaging symptoms of the condition.
If left untreated, it can lead to serious health problems such as osteoporosis and in some cases small bowel cancer
This is why Coeliac UK is launching a major new campaign called is it coeliac disease? It aims to raise awareness among the public about the range of symptoms that may be associated with coeliac disease.
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. Health professionals can also find the symptoms of coeliac disease vague and challenging and can lead to delays in diagnosis. For example, Irritable Bowel Syndrome is often offered as a diagnosis instead of for coeliac disease.
Central to the campaign is a website www.isitcoeliacdisease.org.uk which launches on 11 May. Visitors to the website will find out more about coeliac disease, the most common symptoms and the details of the diagnosis process. Those who suspect they might have coeliac disease will also be able to complete an online assessment, and be provided with some further advice about what to do next through an assessment form which they can take to their GP if the assessment highlights the need for further investigation.
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 damage 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 for Coeliac UK
