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Coeliac UK’s new patron Caroline Quentin is well qualified for the role as she knows first-hand that only a full diagnosis can help manage the disease

Coeliac disease is an autoimmune condition where the body’s immune system reacts abnormally to gluten, a protein that’s found in wheat, barley and rye. If you think you’re suffering with the disease, it’s tempting to try cutting out all foods that contain gluten – but, in fact, you should continue to eat them until you’ve been properly diagnosed. That’s the message Coeliac UK wants to get across as part of its Awareness Week Campaign (11–17 May). Under the slogan Is it Coeliac Disease?, the charity hopes to reach the half a million people estimated to be suffering but currently undiagnosed.

A time to act – and a time to wait

Actress and TV personality Caroline Quentin, 54, is part-way through her own diagnosis process. Caroline suffered with diarrhoea, stomach pain and cramping, mouth ulcers, fatigue, bloating, vomiting and unexplained anaemia from her 20s onwards – all common symptoms of coeliac disease. Doctors put it down to stress and IBS, but a blood test two years ago indicated she could have coeliac disease, so she took instant action.

‘I decided to go on a gluten-free diet immediately, which made the world of difference to alleviating my symptoms,’ she says. ‘But I realise now I should have gone on to have a biopsy, which is needed to confirm the diagnosis and show the level of damage in my gut.’

The biopsy process

Coeliac disease is initially determined by a blood test that can be carried out by your GP. This looks for antibodies the body produces in response to eating gluten, which causes the symptoms. If there are antibodies in your blood, you’ll need to have a biopsy to look for the characteristic damage coeliac disease causes to the gut. This is why it’s so important to continue eating gluten – if you cut it out, you won’t have the antibodies in your blood, so you’ll get a negative result.

With medical support, Caroline is now in the process of reintroducing gluten to her diet for a six-week period so she can undergo the gut biopsy to confirm her diagnosis. ‘It will be tough to go back to eating gluten – many of the symptoms I once had may reappear – but it’s important to do this properly so doctors can give me the right help,’ says Caroline. ‘I also hope it will highlight to the many people who have symptoms how important it is not to change their diet until they’ve been assessed by a gastroenterologist.’