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For coeliac disease sufferers, there's hope of treatment on the horizon

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As many as 100,000 New Zealanders, many of them undiagnosed, are afflicted by coeliac disease.

Saturday night was always pizza night for Jules Armishaw and her family. Sunday mornings were far less fun. “I’d be an emotional wreck,” she recalls. She felt extreme tiredness. “Crying, mood swings. I couldn’t work out why.”

After the birth of her second child, the Auckland make-up artist and stylist was so bone-tired that a doctor suggested testing for coeliac disease. Armishaw discovered her blood markers for the condition were sky-high. Gluten was her worst enemy and she had been poisoning herself with all that pizza.

That was about 13 years ago. “Looking back 20 years, if I ate bakery food I’d feel terrible. Pies or doughnuts left a metallic taste in my mouth. I just assumed it was the same for everyone,” she says.

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It actually is the same for many people. Wheat, rye, barley and to a lesser extent oats cause gut problems for about 1% to 2% of the population. It’s estimated that in this country 65,000 people are unaware they have it, some because they aren’t showing signs, others because the symptoms are so diverse the condition hasn’t been diagnosed.

This is a problem, because gluten damages the small intestines of coeliac sufferers. Biopsies show their villi – finger-shaped outgrowths of the epithelial lining of the intestinal wall – have disappeared or flattened, dramatically reducing the surface area that absorbs nutrients from food.

The nutritional deficit that results is obvious, but in the longer term this can lead to other complications: early-onset osteoporosis, infertility and miscarriage, liver failure and even cancer.

Jules Armishaw. Photo/Robert Trathen

For people with coeliac disease, the diet has to be kept scrupulously and entirely free of contamination. They can’t pop a slice of gluten-free bread in a toaster that has been used for bread made with wheat flour. They can’t eat fries cooked in the same vat as classic battered fish, or enjoy a gluten-free cake in a cafe if it has been sliced on a board covered in crumbs from a wheat-based one (or even got too cosy in the cabinet). Even little kids, who tend to put fingers in mouths, can be adversely affected by Play-Doh, which contains wheat, if they have coeliac disease.

Armishaw is trying to keep her house entirely gluten-free and has become a whizz at baking and cooking without it. But when she is working away from home, it is far trickier. She carries snacks of beef jerky and paleo cookies in her handbag, and in restaurants orders steak because it is least likely to have been contaminated. It frustrates her that there are still people who don’t take the condition seriously, dismissing it as a fad, or claiming a food is gluten-free when later it turns out it wasn’t.

These days if Armishaw “gets glutened” she is violently ill 20 minutes later and for the next two to three days feels as though she has a terrible hangover. “I’m angry, shaking, have diarrhoea. I used to get severe cramps in my hands.”

The condition afflicts other members of Armishaw’s extended family. She suspects her younger son, Sol, aged 10, has it, and his 16-year-old brother, River, was diagnosed at Christmas. For teenagers it can be especially tough.

“River hates it more than anything,” says Armishaw. “He loves food and is really struggling. He doesn’t want to be different from everyone else. His friends all hang out in burger bars but there’s nothing he can eat there. A vaccine is all he’s waiting for. He asks me all the time how long it is going to be.”

Jules Armishaw with River, left, and Sol. River has been diagnosed and “a vaccine is all he’s waiting for”, Armishaw says. “He asks me all the time how long it is going to be.” Photo/Robert Trathen

A big step forward

For River and other sufferers, the good news is that there are signs of a treatment on the horizon. The first big step forward was the recognition this isn’t simply a bowel condition but in fact a permanent autoimmune disorder, linked to everything from depression and skin conditions to problems in the liver, pancreas and spleen.

Some people are genetically susceptible to coeliac disease. But the genes concerned are extremely common and their presence does not necessarily mean someone will develop the disease. The current thinking is that some sort of trigger, such as a viral or bacterial infection, may change the way the body’s immune system responds to gluten. Treating it as a pathogen, it sends in white blood cells called T-cells to fight the offending proteins. This causes the chronic inflammation that damages the small intestine.

A mostly symptomless virus called a reovirus has been identified as one potential trigger and a common bacterium, pseudomonas, is another likely culprit. However, there are almost certainly others. Many women report noticing the symptoms after a pregnancy, for instance.

An imbalance of the microbiota – that all-important population of bacteria in the gut – also seems to have a role to play. Gastroenterologist Jason Tye-Din says our understanding of how coeliac disease develops is still in its early days. But at the Walter and Eliza Hall Institute of Medical Research in Melbourne, he and New Zealander Bob Anderson made a significant breakthrough by identifying the key fragments of gluten that appear to drive the immune response.

“These peptides bind to the T-cells in the gut,” says Tye-Din. “And that reaction is what causes the damage in the bowel and around the body.”

Jason Tye-Din: understanding how the disease develops is the key.

He is one of a team trying to use these pure fragments of gluten to develop a desensitisation therapy, delivered in the form of a series of injections, that will switch off the immune response. The first phase of clinical trials to establish safety and tolerability involved people in New Zealand, Australia and the US, and the results were encouraging. Phase 2 is set to kick off later this year but, even if it goes well, it will be five to 10 years before a therapeutic vaccine is available.

In the meantime, more people are discovering they have the condition. “It’s certainly much more prevalent now,” says Tye-Din. “There’s research to show it’s four times higher than 50 years ago. If you went back in a time machine you’d find far fewer people suffering from coeliac disease. And the effect is above the rate of increased awareness and detection.”

Having spent 15 years looking at the disease, Tye-Din says it was ironic that he didn’t realise his own wife was afflicted. “She was diagnosed late last year. In my defence, she’d had no symptoms. But she had two miscarriages and after the second – knowing it’s a cause of infertility and miscarriage – I said we really need to screen you.”

Given that the two immune-system genes associated with coeliac disease are so common – about half of the population has one or both – the number of cases will continue to rise if the viruses or bacteria spread or environmental triggers increase. Tye-Din believes there is no doubt that targeting the abnormal immune response is the way to treat it. And if a vaccine is effective, he hopes it could be a platform technology that might one day apply to other autoimmune conditions.

Paul Giacomin.

Diet of worms

At James Cook University in Queensland, immunologist Paul Giacomin is taking a very different approach to solving the same problem. He is in the middle of the third clinical trial with 60 coeliac sufferers in New Zealand and Australia using live hookworms to try to control the immune response.

The larvae, applied to the skin in a patch, travel through the bloodstream to the lungs, where they hang out until they are coughed up and swallowed. They end up in the small intestine, where they live very happily (they are about 1cm long when fully grown).

Being infested with even a few of these parasites doesn’t sound particularly appealing, so it is telling that at the end of the second phase of the trial all the participants wanted to keep their worms.

“They were eating a medium bowl of pasta – so 75 spaghetti straws – and not showing any symptoms,” says Giacomin. “That’s when we started to see we were onto something.”

Hookworms have evolved with us for millennia. In order to thrive in the gut, they have to be good at controlling our immune response so that our cells don’t treat them like pathogens and turn on them.

“People have noticed that in places such as Australia and New Zealand, where we don’t get exposed to parasitic worms, there has been a rise in autoimmune diseases including coeliac,” says Giacomin. The modern medication that has got rid of many intestinal parasites “may have caused the immune system to go out of balance and start attacking things it shouldn’t. There’s a potential link to type 1 diabetes, multiple sclerosis and rheumatoid arthritis, which are all on the rise.”

Clearly a large infestation of worms isn’t going to be beneficial. However, a low dose in otherwise healthy people appears to be safe and well tolerated. Giacomin has had no shortage of volunteers for his trials but still isn’t suggesting that the medieval-sounding treatment is for everyone.

“We don’t think live-worm infestation will be acceptable to the mainstream, but worms may contain a molecule – or more likely a cocktail of molecules – that they secrete into the immune system to control it.”

Giacomin hopes to identify whatever anti-inflammatory proteins or enzymes may be involved and he and his team are busy testing in animals and human models. If the tests prove the case, it might be possible to use an extract of parasitic worms in tablet, vaccine or even yogurt form to control coeliac disease and other autoimmune disorders.

“We may never find a complete cure but there has to be something out there that can protect people,” says Giacomin.

Dana Alexander.

Better diagnosis

In the meantime, the focus is on improved diagnosis and support. Discovering that a member of the family has the condition can be a major upheaval, says Dana Alexander, the general manager of the non-profit support organisation Coeliac New Zealand. It has developed a national network of 35 area co-ordinators and offers everything from nutrition tips to advice on how to cope in social situations. It approves products certified as gluten-free, allowing them to use its crossed-grain logo on their packaging. And it operates a programme of training and accreditation for the hospitality industry; Hell Pizza and St Pierre’s sushi were among those that signed up early.

Alexander stresses the importance of early diagnosis, even though it is becoming increasingly easy to find gluten-free foods.

“If you just go for a low-gluten diet, you won’t achieve the health outcomes we’re wanting for people with coeliac disease. You’re potentially not addressing something that is avoidable and has much greater long-term health problems.”

Testing for coeliac disease is not without difficulties. Checking for the presence of the genes will tell you only whether you’re susceptible; it will take a blood test to reveal markers of an immune-system reaction to gluten. The problem is that many people who have suffered symptoms such as diarrhoea, vomiting, brain fog, mood swings and abdominal cramps have long cut out bread and pasta from their diet and they are not keen on the six-week gluten challenge necessary to get an accurate result. Tye-Din and his team are developing a test that will detect inflammatory markers in the bloodstream after a person eats a far smaller amount of gluten – even one meal.

Helen Evans.

A conclusive diagnosis often requires a biopsy to check for damage to the villi of the small intestine. In children, this means a general anaesthetic, which can be stressful for them and their parents. At Auckland’s Starship Hospital, staff most commonly diagnose kids in their early school years, says head of paediatric gastroenterology Helen Evans, but they are moving towards European guidelines, which are that a child who is at high risk and has a highly positive blood test does not need to be biopsied.

“Sometimes children can have transient markers in their blood that go away spontaneously,” says Evans. “So with low to moderate levels, a biopsy is still necessary to confirm diagnosis.”

The decision to avoid doing biopsies where possible was controversial at first. “So we did a research project to look at how many children could have avoided biopsy if that system had been in place and we found the guidelines were very accurate. It can save the children a trip to hospital and cut out waiting time so they can start the gluten-free diet sooner.”

Every year, there is an increase in the number of blood tests performed and Evans believes we are getting better at picking up coeliac disease early.

“In the bad old days, children would come to us very malnourished and may have had a pause in growth but we almost never see that now.”

Sean Hewetson.

The gluten-free craze

Gluten-free eating has certainly become trendy, part of the craze for clean eating that has swept through certain demographics. There is no evidence this is any healthier for you if you are not gluten-intolerant or coeliac. In fact, it may well be bad for you. There is a chance of missing out on a balanced diet that includes wholegrains containing important nutrients and it has been associated with an increased risk of heart disease.

Manufactured gluten-free products can be highly processed, low in fibre and loaded with fat, sugar and salt. Besides, being gluten-free by choice means missing out on a lot of deliciousness that people with coeliac disease would dearly love to enjoy again.

Sean Hewetson, 26, is the son of cookbook writer Annabel Langbein, so has never faced a shortage of home baking. But two years ago, backpacking through Myanmar, he contracted the parasitic waterborne disease giardia. He was treated and thought everything was fine until, after moving to the UK, where he is studying medicine, he started experiencing worrying symptoms.

“I was getting more and more tired,” he says. “I was vomiting after meals and losing a lot of weight – 10kg in a month. And I lost all of the feeling in my hands and feet, which really freaked me out.”

Hewetson says medical students are famously hypochondriac, given to immediately assuming they’ve got the symptoms of whatever they are studying. But in a session on coeliac disease, as they ran through its different manifestations, it became clear to him that he wasn’t imagining things. He was diagnosed soon after.

Annabel Langbein. Photo/Victor Carter

“In many ways it was really tough for me to make the transition into gluten-free life,” he says. “Food was a big part of how I interacted with other people, how I celebrated or treated myself when I was feeling down. It felt like this thing that had underpinned so much of my life had been swept out from under me.”

Hewetson still enjoys baking for other people. “At home we have this tradition of baking Swedish sticky buns. I’d make them every Christmas. Last year, I baked them for friends I was staying with. You get this beautiful smell of sugar and cinnamon pervading the house – and I couldn’t eat any.”

Travelling is no longer as carefree. Before Hewetson goes to a foreign country now he reads up on common foods and cooking techniques so he knows where the gluten is likely to be, and while away he carries cards in foreign languages to show to chefs, outlining what is unsafe for him to eat,

As a result of his developing the condition, Langbein has become aware of how widespread coeliac disease is and how disastrous it can be to ingest a hit of gluten by mistake; her son is probably the reason there are so many carefully thought-out gluten-free recipes in her new baking book. Like other people with the disease, he is hanging out for a vaccine or treatment, and knows exactly what he will do when it happens.

“I’ll go to Paris and get one of those delicious, crunchy, proper baguettes and have it fresh out of the oven, slightly warm, spread with butter. Just that, nothing else, and it would be so, so good.”

This article was first published in the June 2, 2018 issue of the New Zealand Listener.