On receiving the news in 1986 about needing to be gluten free to control my dermatitis herpetiformis, I immediately joined Coeliac New Zealand. This was the best thing I could have done, and my “Ingredient List” booklet accompanied me on every visit to the supermarket for quite some time. There was no food labelling, and I didn’t know what I didn’t know. It was a rocky road at times, and it was not helpful that apart from my skin issue, I was asymptomatic. I know now, that even though I thought I was being very strict, I was inadvertently consuming some gluten along the way. I had been prescribed the drug Dapsone and that was keeping my skin under control.

Fast forward to the 21st century. The number of gluten-free products available has expanded exponentially and food labelling is now much more detailed and regulated. My skin was now reliably clear, and I had confidence that my GF diet was indeed strict, and I stopped taking Dapsone. One thing I have noticed now is that my gut reacts within hours if I eat gluten.

I have travelled extensively over the last two decades. While holidaying, I have generally been able to find GF alternatives. I have always taken the translation cards with me, and these have been an enormous help as food is usually an important part of my overseas adventures. I think southern France and Spain have been my most challenging locations, though in saying that, in both countries, I was generally able to find great food and never went hungry.

I visited the UK and Germany in 2006 and was blown away by the GF selection available there. I came home with a suitcase (20kg) of GF goodies! At the time, I thought that more cafes and restaurants in New Zealand had heard about gluten free than in the UK, although that did not often translate to GF food being more readily available here. In 2009, it was a challenge to find places to eat in Seattle and Vancouver and I passed on GF bread with a five-year expiry date in a convenience store in the US! I have been on two amazing cruises in Alaska and the Mediterranean and could not fault the cruise lines’ vigilance in keeping me safe and delivering delicious meals every time. Like all travelling coeliacs, I have been on long haul flights where my meal has not made it on board but have generally found the flight attendants have gone out of their way to find me something.

In my work life both in New Zealand and Australia, I found that fellow staff were very supportive once they knew (and understood) my gluten free requirement. I think it also helped when they knew I was coeliac and that this was not simply a food choice. I would always be proactive about chatting to the organiser of a morning tea/lunch/birthday celebration/Friday drinks and would always offer to bring something gluten-free to share (and did so). I don’t know if my experience has been unusual, but found that mostly, there would be gluten free items ordered for me. At conferences, other people would often be envious of my meal, though a fruit platter would be the dessert offering about 90% of the time. Today, most conference catering seems to have at least one of their meal options gluten free for all attendees. Of course, there have been times that I have been forgotten (or I forgot to let people know), but I preferred not to make an issue of it, and I always carried a snack bar in my bag for emergencies.

I have now retired and settled back in Auckland, and it is quite evident that we have a more restricted selection of GF foods and that prices are significantly higher here than in Sydney. However, the number and variety of gluten-free products available has expanded exponentially since I was first diagnosed in 1986, and we have choices. Food labelling is now much more detailed and regulated making life much more straightforward than it used to be.

I am always thankful that I have a disorder that I can control (quite simply really) with my diet. There are many others who are not so fortunate. I am fit and healthy and I have lots more adventures on my bucket list to tick off. As always, I am determined that being gluten free will not be an impediment.

I have maintained my membership with Coeliac NZ since 1986, and I also joined Coeliac Australia for the eleven years that I was there. Both organisations do tremendous work to provide support and information to those of us who must live without gluten, and I’m honoured to now assist Coeliac NZ in the work the organisation does in making a difference for the coeliac/gluten free community.

Jenny Kuttel is a member of the Coeliac NZ Board. She has wide-ranging business experience in industries including rail operations in New Zealand and Australia and sawmilling operations in New Zealand. She has expertise in project management, policy development and implementation, operations management, human resources management and, management consulting services. Jenny has been a member of Coeliac NZ since 1986 and still remembers the difference the society, made for her when she was first diagnosed.  Now retired after a busy career and returned to NZ she is contributing to the ongoing success of the society and the work it is doing for all those with coeliac disease, dermatitis herpetiformis or, gluten intolerance.  She knows there are still challenges with raising awareness across many sectors, including the medical profession and the hospitality industry.  She believes that CNZ can take credit for the dramatic changes in awareness over the past decades, and she would like to assist with that continuing journey.