Over 30,000 Scots at risk from undiagnosed coeliac disease

Research has revealed there are still more than 30,000 people across Scotland living with undiagnosed coeliac disease. These people are not only likely suffering from unexplained symptoms, but are also at risk of serious long-term health problems like osteoporosis, neuropathy, infertility and in rare cases, small bowel cancer. 

Coeliac disease is a serious autoimmune condition, affecting around 1 in every 100 people. People are born with the genes that predispose them to developing the disease.

Once the condition is triggered, their body’s immune system attacks its own healthy tissues in response to eating gluten, a protein found in wheat, barley and rye. It can be diagnosed at any age and is a lifelong condition that needs continual management.

Symptoms and their severity are wide ranging but can include bloating, stomach cramps, diarrhoea, constipation, extreme tiredness, persistent mouth ulcers, anaemia and neurological symptoms such as loss of balance and co-ordination. 

Currently there is no cure for the condition and the only treatment is a strict gluten-free diet for life. In most cases, this will allow the gut to heal, but neurological damage can only be halted and may cause ongoing issues.

Despite being common, around 6 in 10 Scots living with coeliac disease have yet to be diagnosed. This translates to over 30,000 people in Scotland living with, and suffering avoidable harm due to undiagnosed coeliac disease. 

Unfortunately, delays in diagnosis are common and considered a significant barrier to improving patient outcomes. This can result in the development of significant neurological damage: on average, patients with neurological symptoms are diagnosed ten years later than those patients with gut symptoms.

Scotland leading the way!

In 2018, a new national evidence-based pathway for coeliac disease was launched across four health boards (NHS Lothian, NHS Lanarkshire, NHS Greater Glasgow and Clyde and NHS Tayside). It was funded by Scottish Government’s Modernising Patient Pathways Programme, and co-produced in partnership with key stakeholders including Coeliac UK, people living with coeliac disease and clinicians. The dietetic led pathway commenced in 2018 and delivers early diagnosis, early intervention and support, so people can self manage their condition with monitoring via community pharmacy. The pathway has been such a success that plans are in place to rollout the pathway across Scotland. Gluten free food service (GFFS) Access to gluten-free staple products on prescriptions plays a crucial role in managing coeliac disease. In recognition of this, the Scottish Government launched the GFFS in 2015. The pharmacy-led scheme enables all those with a diagnosis of coeliac disease to access gluten free bread and other staple products through their local pharmacy, freeing up GP time and delivering much needed support to those with the condition.

It takes an average 13 years from onset of symptoms for an adult to be diagnosed. That’s more than a decade of potentially feeling ill, not knowing why, missing work, missing moments with family and friends, trips back and forth to the doctors or worse.

Misdiagnosis is also a major challenge. Roughly 1 in 4 people with coeliac disease have previously been misdiagnosed with irritable bowel syndrome (IBS) despite the fact that NICE guidance recommends a test for coeliac disease before any diagnosis of IBS is offered.

Cost to the NHS

By failing to target interventions appropriately, the NHS faces the steep costs associated with treating avoidable complications. Recurring GP appointments, management of osteoporosis and bone fractures, unexplained infertility, and even cancer treatment are all much costlier than diagnosing coeliac disease.

The good news is that the first step toward diagnosis is a relatively simple and cost effective one, a blood test which can be accessed via a local GP. With better recognition of the symptoms from healthcare professionals and the public, we can secure faster access to a blood test for those at risk.

For the majority of patients, the diagnosis will need to be confirmed by a gut biopsy so we also need to improve endoscopy waiting times. For people with suspected coeliac disease any delay is particularly challenging as this means keeping gluten, the very thing making them ill, in their diet throughout the wait time in order for the test to be accurate.

Despite improvements in Scotland, these have been hit badly by Covid-19. The number of people waiting more than the minimum six-week target has increased by 29 per cent compared with the same period in 2019. We suspect from our own research that that figure is even worse amongst people with coeliac disease.

Under-diagnosis of coeliac disease needs addressing now. Thirteen years is too long. Such is the experience of those seeking diagnosis of coeliac disease that many talk, not of the disappointment of a diagnosis but, the relief of finally having an answer.

Today, over 30,000 people across Scotland deserve that answer. Coeliac UK have been campaigning on diagnosis since 2015, and we’ll be launching a new initiative soon.

Go to www.coeliac.org.uk for the latest news. To find out how you can support us email Tristan.Humphreys@ coeliac.org.uk

This article was sponsored by Coeliac UK