Patients experience uncertainty when following the traditional diagnostic pathway for coeliac disease, according to a study published in the British Journal of General Practice (BJGP).

The study team from the Centre for Academic Primary Care, University of Bristol and NIHR ARC West suggested that GPs could improve this by:

• keeping coeliac disease in mind as a possible diagnosis
• sharing information on blood tests.

Researchers also discussed how the uncertainty patients experience during testing for coeliac disease needs to be addressed when considering diagnostic pathway changes, such as a move towards using only blood test results for diagnosis.

Getting diagnosed with coeliac disease can take a long time. This is because symptoms are usually non-specific and can be attributed to other conditions. This often leads to a delay between when symptoms first develop and when a patient is diagnosed.

Experiences of diagnosis

Researchers wanted to understand the experience of someone who had undergone diagnosis. They spoke with 20 adults, many of whom had been experiencing non-specific symptoms for years before coeliac disease was confirmed. They found patients also experienced uncertainty while undergoing testing for the disease, which caused further anxiety.

Coeliac disease is traditionally diagnosed through blood tests and an endoscopic biopsy, while a patient is still eating a diet containing gluten. An endoscopic biopsy involves a camera being passed into the body with a small sample of body tissue being collected so it can be examined under a microscope.

The study team found that half of those interviewed weren’t aware of their initial blood tests including a test for coeliac disease. This meant they were surprised when they received a positive result for antibodies associated with the disease but following this initial reaction, they felt pleased they finally had an explanation for the symptoms they’d been experiencing.

Interviewees also reported waiting a long time for an endoscopy and finding it challenging to manage their diet around the procedure. They felt better not eating gluten but knew they had to be eating it before their endoscopy appointment. However, results from the endoscopy reassured most interviewees they should be following a gluten-free diet for the rest of their lives. For some, it increased their likelihood of adhering to the diet and reduced post-diagnostic uncertainty if their symptoms recurred.

A changing diagnostic pathway

Endoscopy is presented as a ‘gold standard’ for diagnosing coeliac disease. However, the British Society of Gastroenterology published guidance about the possibility of diagnosing coeliac disease using only blood tests, when accessing the procedure became difficult during the COVID-19 pandemic.

Dr Alice Harper, a GP trainee and NIHR Academic Clinical Fellow at the Centre for Academic Primary Care, University of Bristol and the lead author of the study said:

“Approximately 70% of people who have coeliac disease in the UK do not know they have the condition and the pathway to diagnosis is changing so some people may be able to be diagnosed from blood tests alone.

“Hearing how people felt about their journey to diagnosis has highlighted areas that need to be addressed to improve the experiences of future patients.

“The adults we interviewed experienced uncertainty from living with symptoms and seeking an explanation for them, until getting their endoscopy test results.

“As the pathway to diagnosis is changing, we need to consider the patient experience and how we can reduce any uncertainty. Healthcare professionals could improve experiences by explaining the pathway to patients including what blood tests will be taken and how certain they can be of the results. If patients need to have an endoscopy, expected wait times and eating gluten should also be discussed. We need to ensure all patients receive appropriate follow-up and support.”

Coeliac study features in BJGP podcast

Dr Harper spoke to Nada Khan for the BJGP podcast about her study on coeliac disease.

• Listen to the podcast: https://www.bjgplife.com/147
• Watch a short video from Alice’s podcast here: https://youtu.be/CIXgLTrFqDU

Read the paper

Paper: Understanding the patient’s experience of coeliac disease diagnosis: a qualitative interview study. Alice Harper, Jessica Watson, Rachel O’Donnell, Martha MC Elwenspoek and Jonathan Banks. Published in British Journal of General Practice.