No-biopsy diagnosis for adults with suspected celiac disease could cut long NHS waiting lists

Coeliac UKJul 8 2020

The British Society of Gastroenterology (BSG) has issued interim guidance, pending the publication of its new Coeliac Guidelines in 2021, so that some adults with suspected coeliac disease can now be diagnosed based on blood test results alone, cutting out the long wait for an endoscopy with biopsy.

Diagnosis of coeliac disease in adults is usually a two-step process, a blood test to look for antibodies followed by an endoscopy with biopsy to look for damage to the intestine. Early in the coronavirus pandemic, the BSG recommended that non-emergency endoscopies should be paused to protect NHS staff and patients from coronavirus transmission. This meant that many people with suspected coeliac disease have been unable to have an endoscopy as part of their diagnosis.

Coeliac UK has previously called for the national guidelines to review the evidence for adult no-biopsy diagnosis and so fully supports the BSG’s new position. This will enable a greater number of people to gain a faster diagnosis, without the need to wait for an endoscopy at the hospital. Getting an accurate diagnosis of coeliac disease means keeping gluten in the diet throughout the testing process - a difficult feat when waiting lists are long and people feel unwell.”

Hilary Croft, Chief Executive of Coeliac UK

The interim guidance published due to the impact of Covid-19 on endoscopy waiting lists, suggests that a no-biopsy diagnosis can be used for adults under 55 years of age with symptoms of coeliac disease who:

• Don’t need an endoscopy to rule out other conditions
• Have antibody levels (IgA tissue transglutaminase) at least 10 times the upper limit of normal
• Have a second positive antibody blood test (endomysial antibodies (EMA) or tissue transglutaminase if EMA isn’t available)

A GP can request the initial antibody blood test but the decision about whether an endoscopy and biopsy is needed, and the final diagnosis of coeliac disease, should be made by a gastroenterologist. The impact of this new diagnosis pathway will be closely monitored, and data is being collected to assess the impact of this new approach for adults. For children, since 2013, guidelines have recommend a no-biopsy diagnosis for some children.

These guidelines are good news for those who meet the criteria for a no-biopsy diagnosis who will be able to start to feel better sooner on a gluten free diet, the only treatment for coeliac disease. However, those that do not meet the criteria for no-biopsy diagnosis are likely to face long waiting times as endoscopy services begin a phased return. Access to blood tests may still be limited at the moment, so we encourage people to speak with their GP for more information about diagnosis of coeliac disease if they are experiencing symptoms.”

Hilary Croft

Coeliac disease is not an allergy or an intolerance but an autoimmune disease where the body’s immune system damages the lining of the small bowel when gluten, a protein (found in wheat, barley and rye) is eaten. There is no cure and no medication; the only treatment is a strict gluten free diet for life. 1 in 100 people in the UK has coeliac disease but only 30% of those with the condition have been diagnosed. There are an estimated half a million people in the UK who have the condition yet don’t know it.

There is a wide range of symptoms associated with coeliac disease. Some symptoms may be confused with irritable bowel syndrome (IBS) or wheat intolerance, while others may be put down to stress or getting older.

To make it easier to understand if symptoms are possibly due to coeliac disease and discuss further testing with your GP, Coeliac UK has developed a self assessment test to make it easier to take that first step to diagnosis.

Go to www.isitcoeliacdisease.org.uk to take the online assessment.