Nick Xenophon (SA, Independent) Share this | Hansard source

It is good to be back. It is a great privilege to be patron of Coeliac South Australia and Northern Territory, because they do tremendous work on a very important issue. I have this information from the Coeliac Australia website:

Coeliac disease is an immune disease caused by gluten, a protein in wheat, rye, barley and oats. When people with coeliac disease eat gluten, an inappropriate immune reaction causes inflammation and damage to the small bowel (intestine). Untreated, coeliac disease can cause a range of symptoms and health problems. Treatment involves lifelong and strict avoidance of gluten in the diet and leads to healing of the bowel and better health.

This condition can be very serious if not diagnosed and treated, leading to something called 'villous atrophy', which:

… reduces the surface area of the bowel available for nutrient absorption, which can lead to nutrient deficiencies. Inflammation also results in problems that can affect the bones, joints, skin and other organs, such as the liver and brain.

It is a grossly underdiagnosed condition.

On 3 November, in Adelaide, I spoke at Coeliac South Australia and Northern Territory's AGM. It was an absolute pleasure to be there. They even laughed at my very bad joke, where I said that I was patron of the Coeliac society because I am a 'gluten for punishment'! I want to congratulate the president, Ms Catherine Russell, and the vice-president, Mr Dennis Fountaine, and their entire committee for the excellent work that they do.

One of the things that has struck me from my involvement with the organisation is how many people think that coeliacs are just fussy eaters, when nothing could be further from the truth. The information I gave from the Coeliac Australia website indicates how serious this condition can be. Most Australians do not realise that coeliac disease is much more prevalent than was previously thought, with more than half of our population at risk of developing the condition, according to new research. A report by journalist Bridie Smith just a few weeks ago indicates that, while overseas studies have suggested that between 30 and 40 per cent of people have the autoimmune disorder, results of the first study to assess the prevalence of the disease in Australians show that 56 per cent carry one of the two known genetic markers associated with the condition.

I am very grateful for the work of the Royal Melbourne Hospital's Dr Jason Tye-Din, which points out that, just because you have a genetic predisposition to the disease, it does not mean that you will get it, but, as Dr Tye-Din says, 'About one in 40 who carry the genetic markers will go on to develop coeliac disease.' A team led by researchers from the Walter and Eliza Hall institute in Melbourne and including scientists from Barwon Health and Deakin University have developed a new diagnostic test which is very accurate. It adds a genetic test which scans for the two key genetic markers carried by 99.6 per cent of coeliac patients.

The research by Dr Jason Tye-Din and others indicates that a very significant one in 60 Australian women and one in 80 men could develop coeliac disease, and this is something like 300,000 Australians with a condition that can cause so much misery and suffering but which can be effectively managed. I agree with David Sullivan, the National Business Development Manager at Coeliac Australia, that the study findings should serve as a wake-up call for the health sector. And I should make it clear that the figures from this research indicate that there are tens of thousands of Australians with this condition who are not diagnosed but who, if they had it diagnosed, could dramatically turn their lives around. A very good friend of mine recently told me that he was suffering a lot of terrible symptoms, of irritability and bloating and the like, and was diagnosed as a coeliac, and his life was turned around as a result of that diagnosis.

This is an important issue that must be dealt with. In terms of preventative health, it is important that the findings of the research serve as a wake-up call to the health sector for more people with this condition to be diagnosed. I urge this government and all my colleagues to make sure that there is appropriate research and education for people to be appropriately diagnosed if they have this condition which can be so well managed if diagnosed. The lack of diagnosis is a real issue, and I will do all I can to work with the coeliac society to increase the level of awareness of this disease.