Russian roulette: Coeliac sufferer Jade Mayhew will be crippled by pain if she consumes even the smallest amount of gluten.
Russian roulette: Coeliac sufferer Jade Mayhew will be crippled by pain if she consumes even the smallest amount of gluten. Photo: Supplied

Richard Cornish

Jade Mayhew is an intelligent, fit young mother who works in Melbourne's food and wine industry. She has coeliac disease. This is a disease that leads gluten, a protein found in wheat, barley, oats and rye, to strip away the tiny, finger-like villi in her gut. Villi allow us to absorb nutrients. If Mayhew eats even the slightest amount of gluten she suffers acute abdominal pain. "Slightest amount" means 50 milligrams, to be precise; less than one-hundredth of a slice of bread. 

Mayhew is a friend of mine. I have seen the debilitating effects of the disease myself. One night we dined on sushi together. She gave the kitchen advice about her disease well in advance. She told the staff about her disease and double-checked there was no gluten in the food. Before the end of the meal her happy demeanour had changed. Her arm went around her stomach. By the time she was in the car she was slumped in pain. The soy sauce had been fermented with wheat. Less than half a teaspoon had turned her into a limp doll.

Off limits: Soy sauce typically contains gluten.
Off limits: Soy sauce typically contains gluten. Photo: Marina Oliphant

For sufferers of coeliac disease, it's not just the acute symptoms that are concerning. Continued exposure to gluten will destroy the villi in their bowels, leading to a dramatic increase in the risk of developing bowel cancer and liver disease. For them, the term "gluten-free" is not a lifestyle choice. It is literally a matter of life and death.

The problem is that non-coeliacs following the "gluten-free" fad, who do not suffer an allergy or intolerance, are weakening the restaurant and cafe industry's support for true "gluten-free" labelling. Good Food has collected many complaints from restaurateurs about diners who insist on a gluten-free meal, then proceed to order wheat-based food. "I know gluten-free food is essential for coeliacs," says Rosa Mitchell from city restaurant Rosa's Kitchen. "We have people who insist a 'gluten-free' meal when they book. The kitchen goes to a lot of trouble to look after them. We use separate utensils, separate pots to cook our meals. We wash our hands before touching any food. Then they order a pastry for dessert. I don't think people know how much effort we go to. It's quite frustrating when people who do not have a genuine gluten allergy eat the bread or order a pastry. It's like the boy who cried wolf."

Jane Davies from Coeliac Victoria and Tasmania says "gluten-free lifestylers" have undermined the efforts by restaurants and cafes to deliver completely gluten-free food. "For us this is a real problem," says Davies, for whom a breadcrumb will cause nausea and vomiting. "Even for the coeliacs who don't have symptoms after eating gluten, it will still affect their long-term health."

Hopped up: Beer is heavy in gluten.
Hopped up: Beer is heavy in gluten. Photo: Kristoffer Paulsen

She says that it is harder now to get true gluten-free food than it was 10 years ago.

Mayhew is painfully aware of the problem. "I now get dirty looks from waiters when I ask about 'gluten-free'. Yes, I am openly concerned for the poor people with gluten intolerance but I cannot tell you how much it pisses me off when someone comes into a restaurant saying they are gluten free because they think it is going to help them lose weight. It's not right."

Over the past few years there has been an attitudinal change among chefs, cooks and front-of-house staff, leading to a loss of vigilance in eliminating gluten entirely from foods labelled "gluten-free". A program of continuing testing by the City of Melbourne has food samples from cafes and restaurants labelled "gluten-free" sent to a laboratory for testing. Alarmingly, some of the foods have been found to contain gluten. The City of Melbourne has then informed the businesses and educated them on how to make sure dishes are truly gluten-free. A recent survey of coeliacs shows that while 90 per cent of them rely on "gluten-free" labels on menus, more than 40 per cent felt they had been exposed to gluten in a cafe or restaurant in the previous three months.

Coeliac Australia is calling on restaurants, cafes and other food businesses to take "gluten-free" seriously again, and have developed a standard that can be followed to create dishes that are safe for coeliacs.

This involves "sourcing, segregation and service" guidelines covering things like using different toasters and grillers to avoid contaminating gluten-free dishes. Even crumbs in frying oil can make coeliac sufferers ill.

"There is no drug for coeliac disease," Davies says. "Avoiding gluten is the only medical treatment we have. Real 'gluten-free' status is essential for our health."

The standard can be downloaded here.

The Gluten Free Expo is at the Melbourne Exhibition Centre over the weekend of October 10-11. This is a showcase of gluten-free products, where visitors can taste and buy pasta, cake, biscuits, desserts, mueslis and other food products. Contestants from MasterChef will appear on stage presenting gluten-free recipes, and speakers from the medical profession will share insights into gluten-free life. The event is being organised by Coeliac Victoria and Tasmania to inform the public about what "gluten free" really means. See gfexpo.com.au