When Mount Maunganui woman Elly McKenzie was diagnosed with coeliac disease 18 years ago, gluten-free food was supplied on prescription from the chemist and restaurant meals would consist of meat, salad and omelette.
Nowadays, she reckons living with gluten-related illnesses is much easier. But that’s not to say it doesn’t come with its struggles.
Elly’s consultancy business ‘The Insides Guide’ was born out of frustration for the lack of support that’s out there for people with coeliac disease and other gluten-related conditions.
“Just how challenging it can be to live truly gluten-free is something most people don’t understand,” she says.
The mother of three also had to learn how to take care of children with non-coeliac gluten sensitivities, which she says brings a whole other level of challenges.
Coeliac disease is an autoimmune condition with symptoms triggered when gluten is ingested. It is thought to affect more than one in 70 Kiwis.
The common protein found in wheat, rye and barley can also negatively impact those with other food sensitivities.
As a qualified food scientist, Elly says her business is for those wanting access to “true insider knowledge” that complements the work of doctors and dieticians.
She was diagnosed with coeliac disease just after she graduated from the University of Otago with a bachelor’s degree majoring in Consumer Food Science.
Despite the shock diagnosis, Elly says she managed the condition well with knowledge gained at university.
It got a whole lot harder for Elly when her first daughter, who has non-coeliac food intolerances, became unwell as a young child. They spent a large chunk of time seeking answers from specialists trying to get to the bottom of the problem.
“It became much more complicated than when I wasn’t just dealing with myself. My daughter was colicky, cried often and had sleepless nights - she just started getting sicker and sicker.
“When she was about six I thought she had coeliac disease, but then the blood test came back negative.
“We went down this road of seeing lots of specialists, talking to lots of professionals but not getting anywhere. It was awful, confusing and stressful trying to figure out what to do.
Through this trying journey, Elly came to realise how difficult it also was for people with food intolerances trying to navigate their health journey.
“I just had a sick child, and it felt like everybody was telling me she was fine. It took a long time of piecing together a lot of information to get to the place where we are at today.
“I just became aware of how little support there is for people with food intolerances. What happens when you don’t quite fit in the box?
“I just wanted there to be a person that someone can talk to about their family, or themselves to get tips, tricks, practical support as well as facts.”
The hardest part of living with coeliac disease is the “anxiety and stress” caused by eating out, says Elly.
“It’s incredibly difficult socially because so many of our interactions are based around food and it isn’t that easy to trust food that others are preparing for you because you don’t know how much knowledge they have.”
Elly says eating out as a person living with coeliac disease was easier 18 years ago, because the condition was taken more seriously by restaurants.
“There were fewer options - eating out was a case of plain meat, salad omelette. Ironically, it used to get taken more seriously because no one had heard of coeliac disease.
“Back then it wasn’t a fad and people weren’t doing it for non-medical reasons. Now if I go out it looks like I have got heaps of options, but many of them aren’t safe for people with coeliac disease.”
Elly says it only takes a speck of ingested gluten to trigger the immune response that damages the small intestine in people with coeliac disease – as little as a crumb of bread.
Cross-contamination in cafés, restaurants and at home can be a big problem for people living with coeliac disease.
After the long-winded journey, Elly says her family is now living a healthy gluten-free lifestyle, and only a few minutes’ walk from the beach.
“It has all just become second nature. Once you know what to do, the confusion and stress is removed.”
And removing confusion and stress is the key reason the Gluten Sensitivity and Coeliac Consultant started her business.
“I wanted there to be a place where people with coeliac disease can come to learn about the practical aspects of their condition and be supported to stay well.
“Too few are being taught how to identify gluten on food labels, for example, and that’s absolutely critical to the management and long-term outcomes of the disease.”
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