Last month, we reported on the latest research from Glutafin’s sister company, Schär, involving over 13,500 people, including over 3,000 people from the United Kingdom. In that first article, we looked at how often people were misdiagnosed with other conditions when they should have been diagnosed with coeliac disease.

This month, we’ll take another look at the research to investigate how long it takes to be diagnosed with coeliac disease, in the UK, in Europe and in the United States. We’ll see whether these timescales are improving as awareness of coeliac disease increases, and what impact these delays in diagnosis can have on patients’ lives.

How long does it take to get tested for coeliac disease?

It is clear from the research that for most patients, the diagnosis of coeliac disease is far from straightforward. As we discussed last month, coeliac disease shares many symptoms with common gastrointestinal problems, such as IBS, and gastric infections, and this often results in misdiagnosis.

The positive news from the survey is that the time it takes to get diagnosed with coeliac disease has reduced significantly in recent years. Overall, the survey found that for adults, the time taken to be diagnosed with coeliac disease has come down from 6.5 years in 1990-2000 to just 3.8years in 2021-24, while for children it has reduced from 2.9 years to 1.2 years over the same period.

Regional variations in being diagnosed with coeliac disease

Coeliac UK reports that the average time to be diagnosed with coeliac disease is 13 years, however our survey found there were significant regional variations in diagnosis delays. Both the time it takes to be diagnosed with coeliac disease, and the improvement in those delays, was found to vary widely between different countries. 

The UK followed the overall trend closely, dropping from a 6.0year delay in 1990-2000 to a 3.7 year delay in 2021-2024, as did Spain (6.3 to 4.0), Medical teams in Italy are leading the way in reducing the wait times for diagnosis, with delay in Italy falling  from 5.6 in 1990-2000 to just 1.8years in 2020-2024, while diagnosis delays in Germany have fallen from 8.8 years to just 3.3 years.. 

Not all countries followed the overall pattern of reduced delays however. The wait time in France has risen from 4.6years in 1990-2000 to 5.4years in 2020-2024.

Which countries have the shortest wait to be diagnosed with coeliac disease?

Italians are currently diagnosed with coeliac disease the soonest out of all the countries studied, with a delay of just 1.8 years. They are followed by Germans, who have to wait 3.3 years and British patients who have to wait 3.7 years. 

The longest waits are reported in France, where it can still take over five years to be diagnosed with coeliac disease.

The problem with waiting to be diagnosed with coeliac disease

Even though the waiting time is improving, a delay of several years before being formally diagnosed with coeliac disease is still a problem for patients. Many people will continue to suffer because they do not understand the link between their diet and their symptoms. Even those that do make the connection will not be able to access gluten free foods on prescription to help them to follow a gluten free diet.

More importantly, if coeliac disease goes undiagnosed, and therefore untreated, for a long period, it can lead to serious complications. According to the NHS, untreated coeliac disease can lead to osteoporosis, iron deficiency, malnutrition, complications with pregnancy and in rare cases, even certain cancers.

Here on the Glutafin website, you’ll find all the information you need to understand your symptoms and to help you to speed up the process of being diagnosed with coeliac disease by refusing to accept a misdiagnosis. We hope it helps you to speed up the process so you can start to heal sooner by following a gluten free diet.

Share this now: