Karen Andrews (McPherson, Liberal Party) Share this | Hansard source

I move:

I rise to speak on this motion in relation to coeliac disease, Coeliac Awareness Week and the wonderful work that is done by Coeliac Australia and its state based organisations in promoting awareness of the disease, improving quality of life for those diagnosed with coeliac disease, and fundraising for research into coeliac disease.

I have spoken in this place previously in relation to coeliac disease, and I did so because of the need to highlight to the community the prevalence, symptoms and management of the disease. Let me start today with some detail about the disease and some known facts. Coeliac disease is an immune based illness caused by gluten, which is a protein found in wheat, rye, barley and oats. Coeliac disease is common; it is estimated that it affects one in 70 Australians. However, recent data shows that the prevalence may be much higher than previously thought, with an estimated 340,000 Australians affected. Unfortunately, 80 per cent, or about 272,000 people, are undiagnosed. This underdiagnosis is due to a number of reasons, including that testing rates are quite low, and they are particularly low for men—and I note that men comprise only one-third of those tested for the disease. Also, the symptoms can be vague, with many people experiencing absolutely no symptoms at all.

Many people with coeliac disease take more than 10 years to be diagnosed, and this certainly needs to be changed. Testing for coeliac disease certainly needs to be done far more frequently, and it needs to be much higher on the agenda for our GPs so that they are actively looking for coeliac disease. Proper diagnosis will exclude other serious illnesses. So, a timely diagnosis, with a lifelong gluten-free diet, is the treatment for it. The lifelong gluten-free diet can most definitely prevent or reverse many of the symptoms of this illness, so it is particularly important that we have an early diagnosis of coeliac disease.

Coeliac disease is a very significant medical condition that, if undiagnosed and not treated properly, can cause serious problems, including malnutrition, osteoporosis, depression, infertility, and an increased risk of some forms of cancer such as lymphoma of the small bowel. Common symptoms in adults include anaemia, bloating, diarrhoea or constipation, fatigue, weakness and lethargy, nausea and vomiting, stomach cramps, weight loss—although weight gain is also possible. The most common symptoms exhibited in children include abdominal pain, bloating, chronic anaemia, diarrhoea or constipation, nausea and vomiting, weight loss or poor weight gain in older children, delayed growth or delayed puberty, tiredness and irritability. Clearly, many of those symptoms are non-specific and, by their very nature, contribute to the high level of underdiagnosis of the disease. Of particular concern is the vagueness of symptoms leading to an underdiagnosis in children.

Who gets coeliac disease? And I refer now to the Coeliac Australia website, where they say:

They conclude in this section by saying:

Many of us have been affected by coeliac disease, through personal diagnosis or the diagnosis of a relative or friend. There are many heart-warming stories from coeliac sufferers whose lives have improved dramatically following their diagnosis. Many stories are available on the numerous websites around the world and there are, of course, many Australian stories as well. I think it is important that consider the impact that this disease has on people throughout Australia in particular.

I have two case studies from people on the Gold Coast, which I would like to put on the record today. The first one is in relation to a six-year-old girl who started prep last year. When she started prep school her mother noticed that all of a sudden she was sick, had bad mouth ulcers and irregular bowel movements. She also had headaches, became bloated and lost a lot of weight. Her mother was very worried and booked her in to see her general practitioner. Her doctor performed a coeliac serology test, and her test results indicated a high likelihood of coeliac disease. A subsequent gastroscopy confirmed that she was coeliac. From that day on she changed to a gluten-free diet; within weeks her condition improved. Her mother said her daughter is now feeling a hundred per cent and is growing and thriving.

The second case study is a 51-year-old woman. In 2003 she was working full-time and going through IVF. She started to get unwell, lost some weight and lost her sense of taste. Her GP told her she had bacterial salmonella. In 2005 she became unwell again. Her IVF had not been successful up to this stage. In January 2006 she went to stay with friends and lost 11 kilograms in about eight weeks. She broke a couple of ribs, had a severe bout of flu and was very sick. When she visited her GP in New South Wales they also performed a blood test, and a subsequent biopsy revealed she was positive for coeliac disease. This was a huge relief for the woman. Since her diagnosis she says that she feels 'a million dollars', she notices that she is no longer grumpy or fatigued, feels she has more energy for children, and is more conscious of food and how it is prepared. Her past fertility and bone density issues could well have been a direct result of her previously undiagnosed coeliac disease. So, I think there is significant anecdotal evidence that indicates that early diagnosis is particularly important.

Coeliac Awareness Week is held annually from 13 to 20 March. Coeliac Awareness Week aims to raise awareness and discussion of coeliac disease, to encourage symptom awareness amongst the public as well as general practitioners, and to promote the message about importance of getting tested. Further information is available from the Coeliac Australia website and I encourage people to go and have a look at that.

I would like to conclude today by speaking about my visit last week to the CSIRO facility at Black Mountain in the ACT. I visited the facility in my role as Chair of the Standing Committee on Public Works. We had the privilege to meet with one of the researchers conducting research into low-gluten grains. One of the developments we heard about is how CSIRO is working to develop a low-gluten barley, which will be used as a first step towards producing a range of low-gluten foods and beverages for the Australian public.

I did ask the CSIRO to send me through some information, which they did, and I encourage the CSIRO to continue the work that they are doing because it is going to be very significant to those individuals who have been diagnosed with coeliac disease. I would like to note that the CSIRO is doing some work on the development of a low-gluten beer that is based on barley, and I understand from the beer connoisseurs that the authentic taste of a barley based beer cannot be found in the gluten-free beers that currently exist. They are made from sorghum, rice, millet and corn. I congratulate Coeliac Australia. I congratulate each of the five state based coeliac organisations. They do a wonderful job supporting the public and supporting their members.

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