Around 60-70,000 Kiwis have coeliac disease. Eighty per cent of them don't know it. Photo / Getty Images
Asking the average person about gluten used to render a blank stare. Not any more, writes Niki Bezzant.
When we started Healthy Food Guide 14 years ago, if you asked the average person what gluten was, you'd likely draw a blank stare. Coeliac disease was not a widely-known condition. Back then, too, if you had it, your options for gluten-free eating were pretty limited. Gluten-free bread, if it was available, was brick-like and depressing; restaurants and cafes were thrown into a panic when asked about gluten-free options for diners.
Fast-forward to 2019 and there's gluten-free stuff everywhere you go. Cafes barely blink an eye when asked for gluten-free options, and there are supermarket aisles filled with coeliac-friendly foods, many of which taste as good or better than their gluten-containing counterparts. Gluten-free food is in the mainstream; a good thing for those who have to follow a gluten-free diet.
That said, coeliac disease itself is still not very widely understood.
It's a permanent autoimmune disease causing an inability to digest gluten. It can show up as a wide range of symptoms. According to Coeliac New Zealand, whose Coeliac Awareness Week is on now, there are around 60,000-70,000 Kiwis out there who have coeliac disease, but up to 80 per cent of them don't know they have it.
That might be because the symptoms of the condition are varied and sometimes vague, and can often be different from what we might expect. While it does affect the gut, and often causes symptoms such as diarrhoea, cramping, constipation, and nausea, coeliac disease can also affect many other parts of the body too, as the natural defences in their body mistake gluten for a threat and release antibodies to fight it.
Symptoms we might not expect include bone and joint pain, skin rashes, and neurological symptoms like poor concentration and brain fog. If these are the only symptoms people experience, it's natural not to associate these with gluten. And sometimes people have no symptoms at all.
In kids, there can be different symptoms again: things like poor growth, anaemia and poorly calcified teeth.
If all this is ringing a few bells with you, what should you do?
The first thing, the experts say, is not to just go ahead and give up gluten. While it's tempting – especially if it seems to make you feel better – doing that will make diagnosis a lot more difficult. That's because the first screening test for coeliac disease – a simple blood test ordered by your GP to measure gluten antibodies in the blood – may present as a false negative if a person is not eating enough gluten-containing food.
If you're already gluten-free and want to get tested, the advice is to do a "gluten challenge" and consume the equivalent of four slices of wheat bread a day for 4-8 weeks before testing. If you're someone who already feels better not eating gluten, that might be tough to swallow.
In that case, another test that can prove useful is a gene test. This blood test can identify whether you have one of the genes possessed by 99 per cent of people with coeliac disease, and doesn't rely on the patient regularly eating gluten. If you have a negative result to the gene test, it effectively rules out a diagnosis of coeliac disease. But if you do have a gene, then a gluten challenge and further testing will still be needed to definitively diagnose coeliac disease.
Once properly diagnosed, people with coeliac disease can become symptom-free, and avoid long-term complications including osteoporosis, depression and an increased risk of throat and intestinal cancer. But they need to follow a life-long strictly gluten-free diet.
That means avoiding all traces of gluten. Not just in the grains that contain it – wheat, rye, oats and barley – but also in all the other foods that contain traces of gluten in their ingredients. That involves scrutinising labels on things like cereals, sauces, drinks and snacks, which may have gluten-containing ingredients as additives. It'll make shopping long-winded at the start, but once you get used to it, life should get easier. It also means being super-careful with cross-contamination. Even a crumb of gluten-containing bread, for example, can cause problems, which is why it's important for restaurants to take coeliac disease seriously. The more people in hospitality who know about how to prepare gluten-free food, the less chance there is of you being "glutened".
If this all sounds like lots of work, take heart. Many newly-diagnosed people report feeling significantly better – to the point of life-changingly better - so there's a real incentive there. But to get there, and know for sure, start at the beginning and see your GP.
* Niki Bezzant is a food and nutrition writer and speaker, and editor-at-large for Healthy Food Guide. Follow her on Facebook or Instagram @nikibezzant