Karen Andrews (McPherson, Liberal Party) Share this | Link to 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.

Christian Porter (Pearce, Liberal Party) Share this | Link to this | Hansard source

Is the motion seconded?

Andrew Southcott (Boothby, Liberal Party) Share this | Link to this | Hansard source

I second the motion and reserve my right to speak.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I rise to support the motion put before this House by the member for McPherson. In doing so, I would like to congratulate her on the kind contribution that she has made to this debate. I can see from her words that she is passionate about this issue. It is important in this parliament that we recognise events such as Coeliac Awareness Week, which takes place from 13 to 20 March—a time when we will not be in the parliament. Parliament is not sitting next week, so it is important that we debate this today. It is also important that we emphasise the key aspect of this motion, which is the need for early diagnosis of coeliac disease, because early diagnosis can prevent the development of many of the associated problems.

Coeliac disease has a number of symptoms, and they are very vague and varied. People may ignore them or attribute them to something else. Some of the most common symptoms are diarrhoea, constipation, nausea, vomiting, flatulence, cramping, bloating, abdominal pain, fatigue, weakness and lethargy. These are symptoms I think that everybody can experience from time to time, and they manifest in iron deficiencies, failure to thrive, delayed puberty in children, weight loss or weight gain, bone and joint pain, recurrent mouth ulcers—as we have already heard from the contribution from the member from McPherson—as well as altered mental alertness, irritability, skin rashes, and even bruising of the skin.

Any one of those symptoms could be attributed to some other cause, and that is why it is so important that people should undergo the testing that is needed if they suspect they may have gluten intolerance—because that is exactly what coeliac disease is: gluten intolerance. If testing establishes that a person is living with or suffering from coeliac disease, then they need to immediately commence a gluten-free diet. It is extremely important that this medical diagnosis takes place early, as coeliac disease is a medical condition that has lifelong implications.

I am sure there is not a member of this House who does not have a constituent or has not been associated with somebody who has this disease. I have a very close friend who suffers from coeliac disease, and this person's life has been changed since she had the diagnosis made. She was actually a woman in her 80s when she was diagnosed with coeliac disease, but by changing her diet and the way she ate she was able to make a big change in her health and general wellbeing. Over the years she had suffered with many of the associated diseases—type 2 diabetes, inflammation—and it is only now that she realises that this plethora of problems she was having could be related to coeliac disease. It is a very simple diagnosis. As has already been highlighted by the member for McPherson, there is a blood test, and then you go through a series of other screening tests. If you are diagnosed, it is important to be tested twice a year for the first year, and after that blood testing takes place on a yearly basis.

Coeliac Australia have done a fantastic job. They provide all the information that a person who suffers from coeliac disease needs. They provide guides to diet, guides to eating out and best practice information to people with coeliac disease. They emphasise very much that it is a disease for which you really need that early diagnosis, and the need for that early diagnosis is what I want to emphasise over and over again, because coeliac disease is not a disease that affects just one part of a person's body; it can affect most systems in the body, and it is a condition that occurs with a very high frequency, as has been highlighted by the member for McPherson. It is only through this early diagnosis and treatment that some of the problems that are associated with it can be prevented.

I would like to conclude by emphasising the need for more research to be undertaken. I would like to emphasise that Coeliac Australia are constantly pushing the boundaries to try to come up with better research and better ways of dealing with things, and I emphasise that it is really important a person who feels they may have coeliac go to their doctor, have the tests, make sure that they change their diet to a gluten-free diet and keep in touch with their doctor on a regular basis.

Andrew Southcott (Boothby, Liberal Party) Share this | Link to this | Hansard source

I commend the member for McPherson on her initiative in bringing this motion before the House. The issue of coeliac disease is a serious one, and probably almost 80 per cent of the coeliac population are unaware that they have coeliac disease. Coeliac Awareness Week is coming up soon—13 to 20 March—and is aimed at raising awareness and increasing the rates of testing and diagnosis of coeliac disease.

It is important not just to have increased awareness in the population but also to have an increased suspicion amongst health professionals, particularly GPs, that someone may have coeliac disease. The member for McPherson read out some very powerful examples of people who had coeliac disease but had often been misdiagnosed. Coeliac disease is when the immune system reacts abnormally to gluten, causing small bowel damage that leads to various gastrointestinal and malabsorptive symptoms. Fortuitously, last week both the member for McPherson and I visited the CSIRO in Canberra, where we saw some of the scientific work that is going on there in the development of gluten-free bread and gluten-free beer. This is very important, because if people with coeliac disease can eliminate gluten from their diet then they can largely eliminate the symptoms, but if they do not eliminate gluten from the diet then they can have a number of serious health consequences, especially if the condition is not diagnosed or treated properly. People with coeliac disease have a genetic predisposition to developing it, and it affects at least one in 100 Australians. There are probably 160,000 Australians who have coeliac disease and do not yet know it. Timely diagnosis of coeliac disease and treatment with a gluten-free diet can prevent and reverse many of the health conditions.

Coeliac Australia is a national federated not-for-profit organisation that supports people with coeliac disease and has done a lot in terms of making sure that gluten-free products are widely available. I commend the work of Coeliac Australia in raising funds to support research for coeliac disease and for raising awareness of coeliac disease and the gluten-free diet within the medical profession, the food and hospitality industry, along with the general public. It is now recognised that coeliac disease is more common than was previously thought. Growing awareness, better diagnosis and improved screening are the key to helping sufferers of coeliac disease, improving it and managing this disease.

Alan Griffin (Bruce, Australian Labor Party) Share this | Link to this | Hansard source

I stand today to speak in support of the motion moved by the member for McPherson and to thank her for reminding the parliament of a particularly important week, Coeliac Awareness Week 2014, and the need for greater public awareness of this condition. Coeliac Awareness Week runs from 13 to 20 March. This year the campaign will run with the successful slogan from last year 'Sick and tired of feeling sick and tired'.

Coeliac disease is an illness where a sufferer will have an abnormal reaction to gluten, a protein found in barley, oats and rye. It is a genetic disease which affects one in every 100 Australians. This suggests it is a quite common disease; however, these statistics alone are not the most disturbing. As mentioned in the motion, there is an alarmingly high number of undiagnosed sufferers, somewhere near 80 per cent. The only way we can reduce this number is by spreading the word and educating Australians on what coeliac disease is, how to identify its symptoms and encourage people to be tested if they have any such symptoms. Coeliac Awareness Week is the opportune time to encourage Australians to be tested.

Symptoms of coeliac disease can be widespread and differ in severity. Some symptoms are more noticeable and serious such as constipation, vomiting, nausea and delayed growth in children. There are, however, more mild symptoms and in some cases no immediate symptoms at all. Undiagnosed Australians may very well suffer from what seems like normal fatigue or stomach cramps, but simply shrug them off as something that will pass, not realising these are indeed symptoms of coeliac disease. Coeliac Awareness Week serves to get the word out to the community that even the most minor symptom could be a sign of coeliac disease.

Coeliac Awareness Week and the work of Coeliac Australia strive to tackle the biggest problem in regard to coeliac disease—that is, the rate of undiagnosed sufferers. When diagnosed and treated accordingly, by way of a gluten-free diet, coeliac sufferers can live a very normal life. On the other hand, sufferers who are undiagnosed risk severe, long-term health impediments such as the inability to absorb nutrients, systemic inflammation, irritable bowel syndrome and, in some cases, ovarian cancer. To avoid the more serious illnesses the message from Coeliac Australia is a simple one: visit your GP and get tested.

I would like to commend Coeliac Australia for the wonderful work they do in raising awareness of coeliac disease in our community. Representing around 25,000 members whose illnesses require a gluten-free diet, Coeliac Australia works to ensure those who are diagnosed can live a high quality life. With their five-state organisation, Coeliac Australia provides their members with medical advice and information from cooking recipes to travelling tips and restaurant recommendations for those who require a gluten free diet. I would also like to join in congratulating Coeliac Australia for their continued efforts in fundraising and research around the disease. Coeliac Australia also does a fantastic job in lobbying for its members—for example, their work around ensuring gluten-free food labelling. Dr Jason Tye-Din, a gastroenterologist by trade and also the Coeliac Australia Medical Advisory Committee chairman, has suggested that of all his coeliac-suffering patients, the ones who took up membership with Coeliac Australia by way of their state branches have found it easier to adopt a gluten-free diet and enjoy a high quality life.

Coeliac Awareness Week is a time when we can all assist Coeliac Australia in getting the message out. Head to the website www.sickandtired.com.au where there is more information about the campaign. On this website you can also print off materials such as posters, fact sheets and flyers to help show support and spread the message of Coeliac Awareness Week. There are also plenty of videos uploaded by Australians who have been diagnosed with coeliac disease talking about how they felt before they got tested and why it is a good idea for people with similar symptoms to also visit their local GP.

I am pleased to do my part in getting behind Coeliac Awareness Week 2014. Publicising this week is the best opportunity we have to reduce the number of undiagnosed sufferers. I would urge all of my parliamentary colleagues to get behind this initiative. A little bit of work by all of us now, pushing for people to visit their local GP and get tested, could in turn reduce the long-term health risks of undiagnosed sufferers. All of us will have family or friends suffering from coeliac disease; many of them may not be aware of it. Coeliac Awareness Week provides us all with the opportunity and the information to highlight this condition throughout the nation.

Debate adjourned.