Amid a widespread cost-of-living crisis, people diagnosed with coeliac disease are paying significantly more for basic staples. Could the introduction of doctor-prescribed subsidies be the solution?
By Suzanne Harrison
Mealtimes at the home of Rupert Bell and his family involve two separate work areas for preparation as well as ensuring there is a separate section of the pantry and in the fridge.
The 58-year-old was diagnosed with coeliac disease only three years ago but has lived with debilitating pain and stomach issues since his 40s.
Consuming gluten at all – even the smallest amount via cross-contamination – can result in bloating, lethargy, nausea, pain, stomach cramps, among other problems.
“If there’s cross-contamination, I will get sick, so my food is prepared and cooked first,” he says. “It is embarrassing to go to other people’s homes, and they have to cook my dinner first.”
A regular traveller for work, he takes his own gluten-free (GF) food on planes. This has to be done to avoid sharp pain and stomach and bowel problems, but also because Rupert’s father suffered from bowel cancer – and there are small links between bowel cancer and coeliac disease, among other possible health issues.
So, sticking to a strict GF diet is imperative, but those with coeliac disease also face the higher cost of gluten-free food staples. For those already financially stretched, it’s become a costly burden.
Rupert’s wife explains the cost of something as simple as a loaf of bread:
Coles sells Abbotts Farmhouse Wholemeal bread for $4.90 (with gluten) but the GF counterpart is $7.80, while it weighs 250g less, and the GF sourdough is $8.30.
A quick check online shows that at Woolworths, one loaf of GF sliced white sandwich bread is $7 for 550g, while its glutenised counterpart is $4.30. A GF spaghetti pasta is $4.70 for 340g, while the regular version is $2.80 for 500g.
The chronic digestive and immune disorder which damages the small intestine is triggered by eating foods containing gluten. Gluten is a protein found naturally in wheat, barley, and rye and is common in foods such as bread, pasta, biscuits and cakes. But it’s also in soy sauce, some mustards, beer, and some stock cubes, to name a few items.
According to Coeliac Australia (CA), about one in 70 Australians have coeliac disease, but only 20% of that number are diagnosed. This means the majority of people who have coeliac disease don’t yet know it.
Long-term health problems such as osteoporosis, liver disease, infertility and a higher chance of developing other autoimmune conditions, can occur if a diagnosis of coeliac disease is overlooked or delayed.
Yet the high cost of GF food staples for those diagnosed with coeliac disease is becoming such a burden that medical professionals and support groups such as CA are pushing for subsidies to counteract the additional stress of paying more at the supermarket.
“Coeliac Australia recognises the importance of this issue and is committed to advocating for change,” a spokesperson for CA said.
“As an immediate step, we have raised a petition to the House of Representatives, calling for a subsidy on essential gluten-free foods. This initiative is vital for Australians with coeliac disease, ensuring they have access to the necessary foods for their health and well-being.”
Coeliac disease can develop at any age. Despite years of reports that it only affects those of Western European descent, groups now report it affects both men and women of all ethnicities.
According to Coeliac UK, the disease is common in Europe and North America, as well as in southern Asia, the Middle East, North Africa and South America. The group says it is a myth that it only affects people of European origin.
To date, little research has been conducted into coeliac disease or wheat allergies in the Chinese population, for example, yet the research that has been done into coeliac disease in China suggests it is just as it is in the West – around 1%, which equates to a potential 14.17 million sufferers in China alone.
Both genetic and environmental factors are important in coeliac disease development, but the genetic link is not confined to one ethnic group.
The presence of HLA type genes predisposes the individual to coeliac disease, but most people with the ‘coeliac genes’ will never develop the disease. The HLA genes are common, carried by about 50% of Australians, however, only one in 40 HLA carriers will get the disease.
Maryjane Aviles, the newly appointed CEO of Coeliac Australia (CA), said the group’s members were facing challenging times in the current cost of living crisis.
“For those with coeliac disease, the gluten-free diet is not a choice, it is the only available treatment for the condition. With staple foods like bread often costing three times as much as their gluten-containing counterparts, we are committed to identifying ways to ensure that cost is not a barrier to successful treatment,” she said.
In addition to proposed advocacy work, CA is dedicated to raising awareness and educating the public through the upcoming Coeliac Australia Gluten-Free Expos, which are being held in Perth next May. They will offer information on managing a gluten-free diet and practical tips to help mitigate costs.
Such practical tips have been long integrated into the life of the Downes family, as Katrina Downes’ husband and two of her four children are coeliacs.
About eight years ago, Katrina’s husband had routine tests which showed he had low iron stores. A gastroscopy and colonoscopy later confirmed he was coeliac.
After testing all four children, two also tested positive. One of the children was small for his age, but now – since following a gluten-free diet and being properly able to store nutrients – he is a normal height.
The issue for families such as Katrina’s is that it is wise to incorporate a GF diet for every family member (most of the time) because of the risk of cross-contamination.
“There are massive price differences,” she says, “I would support a subsidy because there is no medication for coeliacs.
“And in my family, their bodies are used to being gluten-free, so now if they accidentally consume something with gluten in it, they get sick.”
Katrina says she spends a lot of time scanning the nutrient lists on packages in the supermarket, preparing food carefully at home and taking their own when travelling.
Calls for subsidies have been around since 2016, when University of Wollongong researchers Kelly Lambert and Caitlin Ficken found that following a healthy GF diet was most expensive for nuclear families, single parent families and single young males – and was even more difficult for families receiving welfare payments.
“A gluten-free diet is unaffordable for the majority of family types we studied and for most families receiving welfare payments in Australia,” said Ms Lambert, an accredited practising dietitian.
According to her study, the purchase price of a basket of GF staple foods was up to 17% higher than the equivalent gluten-containing foods.
At the time, Ms Lambert called on the government to consider a national subsidised medical foods program in Australia, similar to a model being used in parts of England, so that people with coeliac disease can have better access to affordable GF staple foods via prescription.
In Italy, for example – the home of gluten – the Coeliac Disease Foundation says diagnosed coeliacs receive vouchers to buy specifically produced GF foods, up to 140 euros a month.
In the US, there is a tax deduction. The National Coeliac Association advises that in order to take advantage of the tax break, people must have a letter from their doctor stating they have coeliac disease and must follow a gluten-free diet.
But some argue that choosing a model for Australia that is practical and avoids being abused by people who are not coeliacs but choose not to eat gluten is a real issue.
Dr Anja Landowski, a Perth consultant gastroenterologist with special interest in coeliacs and inflammatory bowel disease, is an active member of CA and has signed the petition to push for government food subsidies.
“There are more GF products now and there’s more variety,” says Dr Landowski, “But I am all for advocating a change (such as subsidies). It would be a big step for the government to recognise that this is a chronic health problem. But the decision makers need to come up with a working model.”
Dr Landowski believes the best model for Australia is a pre-paid subsidy card.
“I think this is the right way to go, but there will need to be a limit on the spending,” she says. She argues that because a lot of GF foods are wholesome, it means making healthy choices is possible without always buying something processed.
Dr Landowski is also pushing for better food education of all families. “I’d like to see education at schools, I would like to see a sugar tax and a processed foods tax,” she says.
Like Dr Landowski, diagnosed coeliac and GP Pauline de Boer believes healthy eating for families with coeliacs would benefit from being better educated to avoid the high costs of GF foods, and eat fewer ready-made meals.
A keen cook, Dr de Boer was diagnosed at the age of 42 – she’s now in her 60s – after struggling with migraines that could last 12 days and gradually noticing an increase in stomach issues.
“I’d obviously had it for a long time, yet within three months of trying a gluten-free diet after diagnosis, I was a new person,” she says.
“I found the diet a challenge at first, but I was always interested in cooking, so it’s not really a problem. I do imagine that if you were a mother of young children, it’d be hard. However, when it comes to (a subsidy idea) you have to be careful.”
That is because there are people who choose to eat GF for their own reasons or are gluten-resistant but are not diagnosed coeliac.
“I can’t see how you would control it. How big a discount do you get? And who is going to pay for that? There are also many delicious and healthy options now,” Dr de Boer said.
CA stresses that subsidies would be for staples such as bread, pasta, and biscuits – the kind of quick and easy food that busy families depend on, particularly to counteract the distress faced by those most in financial need.
How widespread the concept of staple has not been verified, but staples that are glutenised include most breads, crackers, pastas and cookies. Chips, chocolate bars, processed cheeses, prepared meats, many condiments (including vegemite) and a host of ready-made snacks also contain gluten.
Still, as Dr Landowski says – and she is a supporter of the subsidies – “we need to push education for families that a lot of naturally GF foods are wholesome and to come off highly processed foods”.
ED: At the time of publication, more than 20,000 signatures have been collected on the CA petition.