Coeliac disease isn’t just a gut feeling

Coeliac Australia is calling for Australians to rethink coeliac disease by thinking outside the gut, with new research highlighting two-thirds of patients were diagnosed due to non-gastrointestinal signs and symptoms.

It is estimated one in 70 Australians live with coeliac disease and 80 per cent still remain undiagnosed, meaning almost 300,000 Australians may be experiencing sub-optimal health and are at risk of severe long-term health outcomes.

Coeliac Australia has conducted market research into patient diagnosis that found two out of three diagnoses were attributed to non-gastrointestinal symptoms, with 31 per cent of participants receiving their diagnosis following abnormal blood test results that indicated nutrient deficiencies such as low iron or issues with liver enzymes.

Another 11 per cent identified chronic symptoms such as fatigue, joint pain, mouth ulcers and skin rashes as their main symptoms.

Coeliac Awareness Week is observed every year from March 13 to March 20.

Coeliac Australia health advocacy officer Penny Dellsperger said it was an opportune time to highlight the gap in diagnosis and the urgent need for increased awareness of the wide-ranging symptoms of the disease – characterised by an intolerance to gluten, found in foods such as barley, wheat and rye – beyond the conventional gastrointestinal signs.

“Coeliac disease is commonly referred to as a clinical chameleon as it mirrors the symptoms of many other diseases.

“In. reality, gastrointestinal issues such as abdominal pain, bloating, diarrhoea and constipation are not always present.

“As we continue our campaign to improve coeliac disease diagnosis rates, we encourage all Australians if they are experiencing unexplained non-gastrointestinal symptoms such as fatigue, fertility issues, unexplained weight loss, dental issues, mood disorders, skin rashes, hair loss, recurring mouth ulcers and faltering growth or behavioural issues in children – to ask the question: could it be coeliac disease?”

The head of the Coeliac Research Lab at the Walter and Eliza Hall Institute, Associate Professor Jason Tye-Din said coeliac disease was a serious medical condition that commonly developed in childhood.

“Leaving it undiagnosed increases the risk of lifelong health complications such as additional autoimmune diseases, infertility, osteoporosis or lymphoma.

“Coeliac disease is far more prevalent than most think. Undiagnosed coeliac disease can lead to poor health outcomes especially during childhood, including stunted growth, delayed puberty and impaired school performance.

Coeliac disease is a genetic condition, and Coeliac Australia is encouraging testing of all first-degree relatives if someone in the family has already been diagnosed, even if family members are not yet displaying symptoms. Early diagnosis is key for improving longer term health outcomes.

“Coeliac disease has strong genetic origins and anyone with a family history of coeliac disease should be screened – even if they are asymptomatic, as a biological relative of someone with coeliac disease has a significantly increased risk of being affected,” Prof. Tye-Din said.

If you are experiencing unexplained symptoms or concerned you may have coeliac disease, use the free self-assessment tool at coeliac.org.au/self-assessment-tool