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The British Society of Gastroenterology has published new guidelines for diagnosing and managing coeliac disease in adults in the UK, replacing the previous guidance from 2014. So, what's new and what could it mean for your care?

The key changes at a glance

Some adults can now be diagnosed without a biopsy.

Clearer guidance when blood tests and biopsies don't give a straightforward answer.

Specialist coeliac disease dietitian support is recognised as a central part of care.

Newly diagnosed adults should be offered a DEXA bone scan to assess bone health after following the gluten free diet for a year.

All adults should receive regular follow-up for at least two years, followed by care tailored to their individual needs after this.

People doing well may move to ‘patient-initiated follow-up’, rather than automatically having lifelong annual reviews.

1. Some adults may no longer need a biopsy

Traditionally, adults with positive coeliac blood tests have always needed an endoscopy and small intestine biopsies to confirm their diagnosis.

The new guidelines introduce an optional ‘no-biopsy’ pathway for some symptomatic adults being assessed in specialist care.

If your IgA-tTG coeliac antibody level is very high, at least 10 times above upper limit of normal, you may be able to receive a diagnosis without a biopsy. However, only around 25% of patients will meet these criteria. 

Importantly, the guidelines emphasise shared decision-making, so you and your healthcare professional should discuss whether this approach is right for you.

2. Clearer answers when coeliac disease tests don't match

Not everybody's results fit clearly into "positive" or "negative".

The new guidelines provide clearer pathways for ‘potential coeliac disease’, where coeliac antibodies remain positive, but biopsies show little or no intestinal damage, and ‘seronegative coeliac disease’, where blood tests are negative but biopsy and other findings suggest coeliac disease. There is also guidance on what to do in other cases where the diagnosis may look unclear. 

This means results that don’t match or aren’t a straightforward positive or negative shouldn't simply be dismissed. You may need further assessment to understand what they mean and decide what should happen next.

3. Greater emphasis on specialist dietitian support

A lifelong gluten-free diet remains the only treatment for coeliac disease, but you shouldn't be expected to work everything out alone.

The guidelines place specialist coeliac disease dietitians at the centre of your care and set a target for a formal specialist dietitian consultation within three months of diagnosis.

Dietitian support goes far beyond providing a list of foods to avoid. Across multiple appointments it should help you understand what changes you’ll need to make to  avoid gluten completely, identify nutrients that you may need to increase, and help to make your gluten-free diet nutritionally balanced, whilst managing the practical, social and financial challenges of living gluten free.

4. Follow-up that changes according to your needs

Another significant change is a more personalised approach to long-term care.

Everyone should receive regular follow-up for at least two years after diagnosis. Follow-up appointments should assess your symptoms, gluten-free diet, nutritional health and how you are responding to treatment, rather than relying on blood tests or symptoms alone.

After this, you may not need automatic annual appointments forever. If you're well and managing successfully, ‘patient-initiated follow-up’ can be arranged to allow you to contact your specialist team when you need support.

Longer-term follow-up is recommended for people who aren't responding well, those who are struggling with the gluten-free diet, and anyone who develops complications. Also, newly diagnosed adults should be offered a DEXA bone scan to assess their bone health after following the gluten free diet for a year.

Finally, symptoms that don’t resolve on a gluten free diet should also be investigated. In rare cases, ongoing intestinal damage despite a strict gluten-free diet may mean that someone is suffering from a condition known as refractory coeliac disease, which can cause serious health issues. This should be managed in a specialist centre.

The key message: The new guidelines move towards more flexible, personalised coeliac care, with different routes to diagnosis, greater specialist dietitian support and follow-up based on individual needs.

quick FAQs

Q: What is a DEXA bone scan?
A: A DEXA (Dual-energy X-ray Absorptiometry) scan measures bone density and helps identify osteoporosis, osteopenia and fracture risk.

Q: What is IgA-tTG?
A: IgA-tTG (Immunoglobulin A Tissue Transglutaminase) is the main blood test used to help diagnose coeliac disease.

Q: What is an endoscopy (in relation to coeliac disease testing)?
A: An endoscopy is a test that allows a doctor to look inside your gut. A flexible tube with a tiny camera on the end is passed through your mouth, throat and into the small intestine.

Q: What is a biopsy (in relation to coeliac disease testing)?
A: A biopsy is a tiny sample of tissue taken from your small intestine during an endoscopy. It is checked under a microscope to look for signs of intestinal damage that could be caused by coeliac disease.

 

Meet the author

Cristian Costas is coeliac disease specialist dietitian. In the NHS he runs a dietitian-led coeliac service working closely with his gastroenterologist colleagues. He also supports people with coeliac disease in private practice through Coeliac Dietitian Ltd. He has won multiple awards for his work in the field of coeliac disease and is passionate about sharing helpful information on Instagram through @coeliac_dietitian.