Gluten free: Against the grain

By Greg Dixon

There’s no reliable test for it, yet the number of people with gluten intolerance is apparently on the rise in New Zealand. Greg Dixon tries to get to the bottom of the disorder and find out what makes those on each side of the gluten debate so, well, intolerant of each other

Sarah Tucker and Hannah Lee from the Gluten Free Grocer in Mt Eden. Photo / Natalie Slade
Sarah Tucker and Hannah Lee from the Gluten Free Grocer in Mt Eden. Photo / Natalie Slade

It was, I thought, a bit odd. At the meat counter of my favourite gourmet food store there were a lot sausages, some with red pepper, others with garlic, one featuring "bush tomato", but none of them containing something called gluten.

"Do you have any with gluten in them," I asked the young butcher.

"How many do you want?" she said.

"Four, please."

"Sorry, we've only one left."

We live in a world of choice. Sadly this fine Saturday morning, my choice - that would be four, plump, common or garden pork bangers avec gluten - was off, despite the presence of three dozen or so sausages of various delicious-sounding varieties in the meat cabinet.

As I moved off toward the cheese counter, I wondered how could this be? Why would this be? Was there a terrible shortage of gluten I didn't know about?

I had noted on previous visits to my favourite gourmet food store that the gluten-free sausages always outnumbered the gluten ones, in both variety and number, but I'd figured that the shop, which specialises in organic this and artisanal that, must know what it's doing (even if I had, after sampling gluten-free sausages, decided I preferred the gluten-y ones).

I had also noticed - how could you not? - that among the seemingly endless ingredient lists, nutritional information, nut warnings and the bragging about no artificial this or that covering food packaging these days, the words "gluten free" or "contains gluten" now made regular appearances.

If I am honest I'd taken both these observations and, applying my usual prejudice, had concluded that statements about gluten's presence or absence in food might have something to do with the presence or absence of a bandwagon. After all we live in a world of fad diets. No year passes without the appearance of strange new ways to lose weight, sometimes involving the purging of something I had previously thought benign.

Still, as I pushed the cart past the imported pasta, I couldn't help wondering whether I was wrong, whether I should actually be avoiding the stuff myself - after all why was there so much gluten-free food available if gluten-free wasn't better for you? And then it struck like banger hitting me between the eyes: I really had no idea what gluten is or why it might be evil.

Our food has gone political. And in the charged atmosphere that's formed, particularly in the last decade, around where your food comes from, how it was grown or made, what it might contain and whether it might in some way be harmful to you, the stuff that helps make our daily bread deliciously light and fluffy - gluten - has gone from something good to something that needs a warning.

Gluten is a protein complex found in wheat - which was first domesticated in the Middle East around 12,000 years ago - and other grains, including barley, rye and oats (but not rice). In bread-making, gluten is basically the glue that gives bread dough its elasticity and, when the yeast ferments and produces carbon dioxide, holds the whole lot together and gives the end product, a baked loaf, its lightness and texture.

"Gluten," laughs Hannah Lee, manager of Auckland's Gluten Free Grocer, "makes everything yum."

But not for everyone. Coeliac disease, which was first described around 200AD but wasn't fully understood until around 70 years ago, is an autoimmune disease caused by a severe intolerance to gluten. This, according to Coeliac New Zealand, causes the body to produce antibodies which damage the lining of the small bowel and make it impossible for the body to absorb vitamins, minerals and other nutrients from food. It is a serious disease that may lead to other serious diseases including osteoporosis, Type 1 diabetes and thyroid disease. There's also a small risk of developing certain kinds of rare gut cancer.

There is an accurate blood test (typically confirmed by a biopsy) for coeliac, a disease which is likely to affect around 1 per cent of New Zealanders according to Dr Kristin Kenrick, a senior lecturer at Otago Medical School who not only researches the disease but suffers from it.

"In New Zealand we don't have a really accurate idea of how many people have been diagnosed with coeliac disease, but it is probably around 7000-7500. So that means there are at least 30,000 New Zealanders who don't actually know they have the disease."

Coeliac is incurable (for now at least) and must be managed by eating only gluten-free foods.

"It's actually hard work, or potentially hard work, being on a gluten-free diet," says Kenrick. "It is a pain, it's expensive (bread, for example, is twice the price), it excludes you from the day-to-day things [like] morning tea shouts, or the kids [with coeliac] from going to birthday parties. You're constantly having to think 'no, I can't eat that, that's not safe for me'. Food and the socialising that goes around food is one of the central things of our lives really - so it sets you apart from your peers."

However my favourite gourmet food store isn't stocking dozens of gluten-free sausages for the - in the wider context - small group of people unfortunate enough to be living with coeliac disease.

No, they are in the meat cabinet because a growing number of New Zealanders seemingly have a non-coeliac gluten intolerance. Trouble is we don't know how many people fall into this group or how quickly it's growing, says Kenrick. "I think more and more people are putting themselves on a gluten-free diet, and a part of that is because maybe it does make them feel better".

It's likely New Zealand is similar to Australia where it's been estimated for every person diagnosed with coeliac disease there are 20 people who are on a gluten-free diet. In the States the numbers are higher; a recent USA Today story reported 29 per cent of adult Americans say they want to cut down on the gluten they eat or consume a gluten-free diet - that's the highest percentage since the researchers began asking the question in 2009. The newspaper speculated that the numbers had been given a "boost" from celebrities such as Miley Cyrus and Gwyneth Paltrow talking about the gluten-free diet in the media.

The clear inference: in 2013, it's trendy to be gluten-free.

Sharlene poole was in agony. Every month, from the age of 13, she suffered severe endometriosis which an operation in her 20s did not completely remedy. Every month the postnatal advisor, who styles herself as "the Baby Whisperer", was popping nurofen for the pain. Until eight years ago.

"I went to see a medical herbalist in Tauranga and she said took one look at me and said 'you retain too much fluid in your body'. I said 'what causes that?' She said 'wheat intolerance ... it causes extra inflammation ... it causes your endometriosis to be worse."'

Shortly after, Poole trialled a wheat-free - thus a mostly gluten-free - diet for a couple of months. It was miraculous, she says. She continues to maintain a mostly wheat and gluten-free diet, which she says has changed her life.

Hannah Lee, from the Gluten Free Grocer, Auckland's only dedicated gluten-free shop, was diagnosed with irritable bowel syndrome about eight years ago. However it wasn't until she took the job at the store that she tried a gluten-free diet.

"When I started managing here I went on a gluten-free diet for two weeks to see what it was like for customers. I got so much better I kept gluten out. But I have to be careful about other foods; it's not just gluten for me."

Cheryl Byngeley had a small stroke three years ago. One of her symptoms afterwards was fatigue, which just didn't seem to go away. Her chiropractor suggested she try a gluten-free diet for a fortnight. "My daughter says the person she saw two weeks later was a completely different person. I had more energy and I was able to think more clearly when I'm tired." That was 18 months ago; Byngeley is gluten-free today.

Each of these women have different symptoms. Yet they have one thing in common: they were advised to go gluten-free by someone other than a doctor, or by nobody at all.

It turns out this is very common for those on a gluten-free diet, partly because there is no reliable test a doctor can give you to test for non-coeliac gluten intolerance, and partly because so many people who believe they have non-coeliac gluten intolerance have had enough of doctors.

"For many people [without coeliac disease but on a gluten-free diet]," says Kenrick, "they have a long history of feeling unwell, have inexplicable symptoms and were not getting much satisfaction [from their doctor] in getting to the bottom of that.

"They have searched around for solutions for their particular health issue and we [doctors] don't always know how to deal with people when we can't do a test and find out what the problem is.

"There is an element of it being trendy at the moment. There is no doubt about that. There is a lot of slick marketing going on at the moment around gluten-free foods. But in among that there are people who genuinely have health problems that they haven't been able to explain and this - a gluten-free diet - seems to be the solution."

But for what? Part of the problem for doctors - and for those diagnosing themselves with a gluten problem - is that gluten is not the only problem.

Putting coeliac disease, an autoimmune complaint with a genetic component, to one side, those with non-coeliac gluten intolerance report a wide variety of symptoms including bloating, abdominal pains, tiredness, diarrhoea and constipation.

But there is also wheat allergy, which is rare but can cause symptoms similar to hay fever as well as eczema, hives and in some cases stomach bloating, diarrhoea and depression.
Irritable bowel syndrome (IBS) - which the Ministry of Health lists as a common complaint - can have similar symptoms to non-coeliac gluten intolerance.

However for those diagnosed with IBS it is important to consider that gluten might not be the problem. Australian doctor, nutritionist and dietitian Dr Sue Shepherd says that IBS is more commonly caused by another molecule found in wheat, rye and barley, something called fructan, which is part of a family of short-chained carbohydrate molecules called FODMAPs. In an article published recently in Coeliac Link, Coeliac New Zealand's magazine, Shepherd says that research shows that a low FODMAP diet she developed in 1999 relieves symptoms for more than 75 per cent of people who try it.

"It is the most effective diet for people with IBS," Shepherd writes.

The question, for those with abdominal pain and the other symptoms associated with IBS, wheat allergy and non-coeliac gluten intolerance, is which complaint are they actually suffering from? In the absence of a reliable test, it comes down excluding things from the diet - once you've had the test for coeliac disease, Kenrick says.

"At the moment, really, if you want to sort out whether someone is gluten sensitive you need to test them for coeliac disease, make sure they don't have that. You need to think about alternatives, it could be something else that's causing the symptoms. Or it might be a broader dietary thing - FODMAPs are becoming an increasing area of research. So you need to rule out other things and then I guess the only way to really be sure it is gluten is to try them off it, reintroduce it to see if the symptoms come back and then try them off it again."

But even if you remove gluten from your diet and feel better - hopefully much, much better - you can't relax yet because a gluten-free diet is not a health diet. Lee says the main myth about the gluten-free diet is that you will lose weight. "Some people do and it will probably mean that if you had an intolerance that you are processing food better - but it could also be because you're cutting out a lot of junk food."

The other myth, according to Lee, is that the diet "will basically solve all your health problems" when it might be just one of the things affecting your body.

Kenrick says the perception that the gluten-free diet is healthy is wrong. Some processed gluten-free food maybe higher in saturated fats, or sugar or salt or all three than gluten-y versions. Indeed an assessment of gluten-free food by Consumer New Zealand published in February 2011 found of the 36 it tested, only one met all of its nutritional criteria. And it's what is missing as well as what is added. If cereals such as wheat are absent from gluten-free food, then a lot of fibre and vitamin B is too.

"You've got to replace them or you may actually be missing out important components of your diet," Kenrick says.

Even for those who can tolerate it, gluten is actually hard to digest. But the idea of something called non-coeliac gluten intolerance seems to be even harder to stomach, well at least for some. Gluten intolerance and the gluten-free diet have become regular media fodder, and it's quite common for opinion pieces and stories to generate considerable online debate and complaint.

For example articles on slate.com and motherjones.com in February (the former written by the chief of pediatric cardiology at the University of Massachusetts Medical School) generated over 1700 and 400 comments respectively, many of them irate.

Meanwhile a Sunday newspaper columnist here suggested in January, in a piece about gluten-free diets, that food allergies were "a way for the subject to make him or herself more interesting".

But even opinion pieces by those not suffering from Irritable Columnist Syndrome have challenged the existence of non-coeliac gluten intolerance. The director of the Centre for Prevention and Diagnosis of Coeliac Disease in Milan wrote in the British Medical Journal last November that "there are no objective findings or markers to support a diagnosis of gluten sensitivity and its [manner of development] remains obscure". Again there was a food fight.

Kenrick is at a loss to explain why the subject generates such heat. "There is this attitude that it's trendy or you're making it up ... and if you're a person for whom going on a gluten-free diet has actually solved some health problems, it is a bit sort of demoralising to be faced with that. I can imagine that your natural inclination is to be a bit defensive.

But I don't quite understand the passion with which people engage in this debate - it is quite extraordinary."

Lee, who has managed the Gluten Free Grocer for nearly three years, says the reaction to the slate.com story in particular was mostly from parents. "[They have] kids that don't have coeliac disease but yet are extremely ill. [The reaction to gluten] ranges so massively, from people like me ... to kids who are throwing up uncontrollably for two days. And they feel marginalised [by those who say gluten intolerance is a myth]."

However, Kenrick says, things are changing. Coeliac New Zealand, for example, last June opened up its membership to people who don't have coeliac disease but are on a gluten-free diet. And there have been small scale research projects which, according to one report in the Wall Street Journal, for the first time "shows gluten can set off a distinct reaction in the intestines and the immune system, even in people who don't have coeliac disease".

Says Kenrick: "For a long time it was thought [non-coeliac gluten intolerance] wasn't a real clinical entity. I think the problem has been in the past that people attribute all kinds of symptoms to gluten ingestion and there isn't always a readily explicable mechanism for that: why would gluten cause these particular symptoms? This makes heath professions a little bit sceptical: if we can't explain the mechanism then it makes it a little bit harder to make the leap of accepting that it is the case."

So is there still that leap?

"Yes, but I think the leap is getting smaller."


Coeliac Awareness Week begins on May 26. For more information about the disease and eating gluten-free go to coeliac.org.nz

- NZ Herald

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