People who believe they are sensitive to gluten have often not been adequately tested to rule out coeliac disease, reports a new study.
Jessica R. Biesiekierski told Reuters Health that people with trouble digesting gluten who are not tested for coeliac disease may not get proper treatment, which could lead to health problems down the line.
She led the new study at Eastern Health Clinical School at Monash University and Alfred Hospital in Melbourne, Victoria, Australia.
What is coeliac disease?
Coeliac disease is an autoimmune condition in which eating gluten – a protein found in grains such as wheat, barley and rye – damages the lining of the intestines, resulting in digestive symptoms and potential complications.
Some people who don't have coeliac disease or haven't been tested have similar symptoms they believe are triggered by gluten.
"There is a great deal of hype and misinformation surrounding gluten and wheat allergies and sensitivities. The group of so-called 'non-coeliac gluten sensitivity' remains undefined and largely ambiguous because of the minimal scientific evidence," Biesiekierski said in an email.
"This non-coeliac gluten sensitivity entity has become a quandary, as patients are powerfully influenced by alternative practitioners, internet websites and mass media who all proclaim the benefits of avoiding gluten- and wheat-containing foods," she said.
Read: Tips for managing gluten allergy
Non-coeliac gluten sensitivity
To find out more about non-coeliac gluten sensitivity, the researchers interviewed people who believed they were sensitive to gluten about their diet, their gluten-related symptoms and any tests they had been given.
They enrolled 147 participants from Melbourne. Participants were in their mid-40s, on average, and most were women.
72% of them didn't meet the description of non-coeliac gluten sensitivity, according to findings published in Nutrition in Clinical Practice. For instance, they hadn't had tests to rule out coeliac disease, still had symptoms despite removing gluten from their diet or weren't following a gluten-free diet.
The researchers also found that 44% of participants started gluten-free diets on their own and 21% started on the advice of an alternative health professional. The rest went gluten-free based on the suggestions of dieticians or general practitioners.
About 58% of the respondents believed they were strictly gluten-free, and a detailed look at their eating habits confirmed they stuck closely to the diet.
But about one in four people still had symptoms while following a gluten-free diet.
Biesiekierski said people should see a gastroenterologist for definitive tests before going gluten-free.
"Testing for coeliac disease becomes less accurate and can take longer if gluten is already removed from the diet," she said.
Dr Alessio Fasano echoed the point that coeliac disease and other possible causes of symptoms must be ruled out before a person is diagnosed with non-coeliac gluten sensitivity. "The question is what really triggers this – and because we don't have a clear definition with diagnosis of the disease, there's been tremendous confusion," Fasano told Reuters Health.
He said the symptoms of non-coeliac gluten sensitivity aren't limited to digestive issues.
Read: Gluten allergy boosts death riskChronic conditions
"We're talking about skin rash, headaches, foggy minds, joint (pain), anaemia and diarrhoea – not just irritable bowel syndrome," he said.
People who diagnose themselves with gluten sensitively often suffer from chronic conditions and have been trying unsuccessfully to find the reasons for their health problems, Fasano said.
"They start to Google their condition and they come across this idea that they may have this gluten sensitivity," he said.
Read: Eat well without dairy or gluten
Researchers are still learning about non-coeliac gluten sensitivity, and therefore there are a lot of uncertainties about the condition, Fasano noted.
"Nonetheless because after months, if not years, of no answer for the issues of why they are having these symptoms (patients) decide to go on a gluten-free diet because they have nothing to lose," he said.
Coeliacs can eat gluten
Should more people go gluten-free?