In an ideal world, with unlimited NHS budgets, all children and adults could be screened, allowing them to be diagnosed with coeliac disease early. In reality, NHS budgets are under huge pressure and costly screening programs have to be considered very carefully.

It’s estimated that around 1 in 100 people worldwide have the condition, but only a third of these have been diagnosed with coeliac disease. Part of the reason for this is the wide range of symptoms that coeliac disease can cause, from abdominal pain and altered bowel habits, to headaches and lethargy. This often leads to misdiagnosis. Coeliac UK reports that it can take as long as thirteen years to be correctly diagnosed with coeliac disease. 

Studies show that in as many as 21% of cases, coeliac disease displays no symptoms at all, and many people are completely unaware that they have the condition.

How would screening help?

Left untreated, coeliac disease can not only cause unpleasant abdominal and digestive symptoms, disrupting quality of life, but if left untreated, it can also lead to a number of health issues, including infertility, anaemia, osteoporosis and certain rare forms of cancer. This is why it’s important to get diagnosed with coeliac disease as early as possible, so that you can start to treat the condition by following a strict gluten free diet.

Screening close relatives

If you have a close relative who has been diagnosed with coeliac disease, then your risk of having the condition rises to around 1 in 10. In the UK, NICE guidelines state that you can arrange to be screened for the condition if one of your parents, siblings or children is diagnosed with coeliac disease. However, there is currently no mass screening of the UK population at large.

A pioneering screening programme

In Italy, a law was passed in 2023 introducing nationwide screening for type 1 diabetes and coeliac disease in all children aged 1-17 years. This follows on from a screening trial, which took place in six Italian cities. This trial, involving 4438 children, showed that while 1.65% of children in the study were diagnosed with coeliac disease, only 40% of these had previously received a formal diagnosis. 

While this new screening program may well prove effective in diagnosing coeliac disease in children, it should be noted that coeliac disease can develop at any age. That means that even this extensive and expensive screening program will only scratch the surface of the problem.

Pros and cons of screening for coeliac disease

There are a number of pros and cons to be considered when deciding whether to screen for coeliac disease:

1. Cost – clearly a nationwide screening program requires significant investment, and the benefits need to be weighed against this cost. A study conducted in the Netherlands and  published in the journal Gastroenterology, concluded ‘An earlier identification of CD through screening …leads to improved health outcomes and is cost-effective in the long-term compared with current care’. However, with budgets under pressure, saving money in the long term may not be enough to justify the short-term costs of a large scale screening programme.
2. Accuracy – a common concern with screening is the risk of false positives, which would lead to unnecessary further testing and restricting people to a gluten free diet for life when they don’t need to be. Ensuring that only highly accurate blood tests are used and analysed in accredited laboratories will help to reduce this risk. 

The eyes of the world will be on Italy, as they lead the way in proactive screening for coeliac disease. However, it will be many years before the full results of the programme can be assessed and applied to other countries such as the UK.

In the meantime, if you are experiencing any of the common symptoms, it is important to talk to your GP to get tested and diagnosed with coeliac disease as soon as possible.

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