Coeliac disease is a condition triggered by gluten, which is found in wheat
1% of the UK population is estimated to have the disease
Symptoms include bloating, abdominal pain, diarrhoea, and constipation
Non-coeliac gluten sensitivity is a lesser-known but more common condition
Patients who have it display symptoms but test negative for the illness
Coeliac disease: It’s an autoimmune condition triggered by the protein gluten, found in wheat
Sue Clark knew she needed help when her bloating problem became so bad her wedding ring had to be cut off.
For nearly 30 years, she wore elasticated waistbands because her stomach bloated so much after meals.
‘I could balloon a dress size in a few hours – it was embarrassing. People were forever asking if I was pregnant’, recalls Sue, 50, who runs an insulation company with husband Dave, 52, and lives in Luton, Bedfordshire.
‘I suffered numerous griping tummy pains and diarrhoea. The symptoms seemed to happen at any time.’
She also felt drained and had no energy, and eventually she reached a stage where her finger joints started to swell up immediately after eating.
Sue struggled for years to get a correct diagnosis and treatment.
She first saw a doctor about her tummy pains aged eight, and was told she had a ‘grumbling appendix’ – chronic pain in the appendix.
In her 20s – underweight at 8st 7lb (she’s 5ft 10in tall) and constantly exhausted – she was diagnosed with irritable bowel syndrome (IBS) and told to eat more fibre. But doing so made her symptoms worse.
‘I could never be far from a loo and felt permanently exhausted,’ recalls Sue. ‘I went back to my GP a few times but was told I was suffering “stressâ€.
‘From my late 20s I started gaining weight – 4st in all – until reaching 13st in my late 40s – despite eating child-sized portions.’
Two years ago on holiday in France, Sue noticed her symptoms intensified when she had crusty bread, pastries and croissants.
‘I was doubled up with cramps and diarrhoea. Later a friend suggested cutting out bread. I did and my symptoms improved. I also tried avoiding similar foods including pasta.
‘It was trial and error, but I noticed my symptoms became milder, and seemed only to return when eating wheat. I started losing weight and had more energy.’
Last year, Sue had blood tests and was found to be severely anaemic and deficient in vitamin B12 – both can be symptoms of coeliac disease, an autoimmune condition triggered by the protein gluten, found in wheat.
Antibodies attack the gluten, mistaking it for a foreign body, and attack the villi – finger-like projections which line the small intestine and absorb food. This disrupts the absorption of nutrients and can result in malnutrition.
Ballooning tummy: One of the symptoms of gluten sensitivity is bloating
One per cent of the UK population is estimated to have coeliac disease, often undiagnosed.
Symptoms can include bloating, abdominal pain, diarrhoea, constipation, joint pain and swelling, rashes and fatigue.
Eventually, Sue was referred to a gastroenterologist, who gave her a biopsy (to check for damage to the gut lining). He explained she needed to eat gluten again for two months before having blood tests to check for coeliac disease, as they measure antibodies to gluten – these markers will not be present if you are not eating gluten.
Her symptoms flared again – yet her blood tests and biopsy were normal and Sue was told she did not have coeliac disease.
But her doctor said she had a lesser-known but possibly more common condition, non-coeliac gluten sensitivity (NCGS).
Patients with it display gluten sensitivity symptoms including bloating, diarrhoea and tummy pain, but test negative for the disease despite symptoms disappearing on a gluten-free diet.
However, these symptoms are caused by a different mechanism, although it’s not clear what this is (the swelling of the fingers and toes is possibly linked to fluid leaking from swollen tissues).
It is a controversial diagnosis: many doctors are sceptical about the existence of the condition because there’s no diagnostic test or clear cause.
But Dr Kamran Rostami, consultant gastroenterologist at Luton and Dunstable Hospital, says: ‘I’ve seen many patients with coeliac-type symptoms including bloating, diarrhoea and fatigue, but their results were negative. Some said their symptoms improved on a gluten-free diet. It is becoming clear that there are patients with gluten sensitivity in whom neither allergic nor autoimmune mechanisms can be identified.
‘It is estimated that, for every person with coeliac disease, there could be six or seven with non-coeliac gluten sensitivity.
‘It may therefore affect 6 to 10 per cent of the population, approximately four to seven million Britons, and the vast majority are unaware of it.
‘Our diet has changed in the past ten to 20 years – we now eat more carbohydrates containing gluten than our ancestors, so our digestive systems could be finding it difficult to adapt.’
It’s thought some cases of IBS may, in fact, be non-coeliac gluten sensitivity. And the condition might help explain the prevalence of ‘wheat intolerance’, an often self-diagnosed condition commonly regarded as faddy eating.
Dr Geoffrey Holmes, emeritus consultant gastroenterologist at the Royal Derby Hospital, who wrote one of the first papers on the condition more than 30 years ago, says growing evidence shows non-coeliac gluten sensitivity exists, and that patients respond to a gluten-free diet despite testing negative for coeliac disease.
‘[Non-coeliac gluten sensitivity] is a controversial diagnosis: many doctors are sceptical about the existence of the condition because there’s no diagnostic test or clear cause.
‘Non-coeliac gluten sensitivity is on the research agenda again – driven by the public. In the U.S., 20  per cent of people buy gluten-free food and a study in children in New Zealand found gluten avoidance was five times higher than diagnosed coeliac disease.’
In 2010, Italian researchers found 24 of 120 patients with IBS experienced an improvement when avoiding wheat and dairy.
In another study, published last year in the American Journal of Gastroenterology, 34 patients with IBS who controlled symptoms with a gluten-free diet, but tested negative for coeliac disease, were put on a diet containing gluten or a placebo. Those eating gluten experienced symptoms again.
Professor David Sanders, a consultant gastroenterologist at Sheffield Teaching Hospital and chair of the charity Coeliac UK’s Health Advisory Board, accepts studies have established patients with gluten sensitivity symptoms improve on a gluten-free diet.
‘There is emerging evidence these patients may have a biological basis for their symptoms. But the jury’s still out.
‘Our problem is we don’t know how NCGS is caused and how our immune system responds; we also haven’t got a test for it. There’s this mismatch between what doctors know and what the public are reporting.’ He added that in a new survey of 1,000 people about to be published, 13 per cent reported symptoms after eating gluten.
‘Clearly all these people don’t have coeliac disease and most would test negative for it – but what they might have instead is NCGS or even a wheat allergy.
‘What complicates matters is more recent studies suggest it might not just be the gluten in wheat which is the problem, but the husk, or sugars in the grain.’
Professor Sanders stressed that patients suspecting a problem with gluten should not abstain from it without first seeing their GP and being tested for coeliac disease and wheat allergy.
‘If both conditions have been eliminated it might be worth trying a gluten-free diet,’ Dr Ray Shidrawi, consultant gastroenterologist at Homerton Hospital and the private Wellington Hospital.
‘I’ve no doubt patients with these symptoms have something medically wrong despite testing negative for coeliac disease – some show me pictures of their bellies sticking out after eating bread.’
Whatever the views of the scientific community, Sue Clark says her diagnosis has made a world of difference. ‘I’ve lost 2st and am symptom-free if I avoid gluten. I’ve got my energy back and my tummy’s no longer bloated.
‘There must be others out there like me soldiering on – told they don’t have coeliac disease – but it’s still gluten that’s to blame.’
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