More than one in 10 people who suffer from coeliac disease, a gut disorder that leaves them unable to absorb vital nutrients if they eat gluten, can wait a decade or more to find out what is wrong with them.
The only way to manage the life-long illness is to strictly avoid eating any foods that contain gluten, a protein found in wheat, barley and rye.
The degree to which it is to being missed by doctors has led the Coeliac Society of Ireland to organise a seminar for GPs next week to educate them about symptoms that can mimic other diseases or be too vague.
Many patients have already suffered the effects of malnutrition by the time it is diagnosed and are left with conditions such as the bone-thinning disease osteoporosis, multiple miscarriages, infertility or damage to the lining of the gut.
Grainne Denning, the organisation’s chief executive, said: “A survey of members indicated that it took over five years for diagnosis for 12pc of coeliacs, with 11pc saying it took over 10 years.
“With so many coeliacs believed to be undiagnosed, we believe that improving coeliac disease knowledge in the GP community is essential to improving the rate of diagnosis and the management of coeliac disease, without additional cost to the health service.”
It means many of the one in 100 people with the disease in Ireland are still unaware they have it. Common symptoms can include stomach pain, diarrhoea, fatigue and weight loss.
But doctors can miss it as these symptoms range from mild to severe. A patient may just feel fatigue and none of the other signs. It can be confused with irritable bowel syndrome but some of the treatments for this contain gluten which makes it even worse.
Coeliac disease can be detected by a blood test which can show if antibodies are in the bloodstream. This is followed by a biopsy to confirm diagnosis. Coeliacs have to follow a diet that excludes gluten, which is found in bread, baked goods and pasta.
While the range of gluten-free products has increased dramatically in recent years, they are more expensive than regular varieties.
Among the speakers at next week’s seminar in Dublin will be Dr Chris Steele, the resident GP on ITV’s ‘This Morning’ programme.
He was diagnosed with the disease in recent years at the age of 64. He was treated for irritable bowel syndrome first after suffering stomach pains and feeling run down for a year. He had such loose bowels he had to take anti-diarrhoea tablets before going on air.
When the treatment for irritable bowel syndrome was not working over time, he went to see a specialist.
He said: “I think the symptoms of coeliac disease may have been coming on for a long time but it wasn’t until I had gut problems that I took notice.”
‘I don’t have stomach problems any more’
Niamch Foskin spent nearly 20 years feeling unwell before accidentally finding the answer to why she was suffering such severe stomach pains.
The 34-year-old primary school teacher from Mullinavat, Co Kilkenny, was told in her teens she had irritable bowel syndrome but she found no relief from the medicines she was prescribed.
Her symptoms were particularly bad in her mid-20s. “I could not eat. I would have a pain in my stomach and have a hot water bottle on it,” she recalled.
It was not until last year, after being baffled about why she suffered bone fractures from simple falls, that she went to the A&E department in Waterford Regional where scans and a blood test were carried out.
They found she had developed the bone-thinning disease osteoporosis, a condition that mostly affects older people. While the blood test discovered she had coeliac disease.
The symptoms she had endured for so many years suddenly made sense when she was told how she should have been avoiding any foods containing gluten, the protein found in wheat, barley and rye.
“I had been doing the completely wrong things for years.
“I was convinced I had irritable bowel syndrome and was eating a lot of brown bread for instance. I really had coeliac disease which meant I should have avoided anything with gluten in it such as brown bread.”
Niamh is now fully gluten-free. “I don’t have stomach problems like I did before,” she said.