We all know coeliac disease has many ‘faces’ - it can affect anyone from any walk of life and has a wide range of symptoms that aren’t always easy to see or explain. Throughout Coeliac Awareness Week we’ll be sharing stories  about our people who are living well with coeliac disease and inspiring others to do the same (thanks to the generous support of Bennetto Natural Foods Co).

We’ll also encourage those who might have the condition or is at risk to follow their gut feeling and take the online self-assessment and get diagnosed so they can live well too.

Joy Mcnulty shares her experience with coeliac disease.

I was diagnosed just over 3 years ago with coeliac disease in my early 50s, with no known family history, and having felt more “run down” over the previous few years. I had at least a year of being more tired, putting that down to getting older, working as a full time nurse on shift work with ongoing studies, and having many hobbies that I pursue. I also developed a cough/shortness of breath, which led me back to the GP, who did bloods which indicated iron deficiency anaemia. Then I had an endoscopy 10 weeks later which found I had coeliac disease. My reaction was 'yes, that’s fine; I can do that; no medication; no cancer; all good.'

However, the first few weeks were interesting and full of learning. My son went through my pantry during the first week and took out half of my stock after reading the labels! He told me I needed to have a gluten free kitchen to limit stress. How very wise. I happened to work with two nurses who gave me some gluten free recipes and general guidance, and learned a lot from the internet. I joined Coeliac NZ, which was most helpful in sending useful resources. My hospital also gave me a reference leaflet which was helpful. By the time my dietitian appointment came to fruition two months later, I already had my diet sorted and felt more comfortable shopping. I have maintained a gluten free kitchen. Anyone that comes to my home, eats the same as I do. I have largely cooked fresh foods, as opposed to relying on pre-made food and always enjoyed cooking, so it wasn’t too much of a shock to have confidence in cooking from scratch once I knew what foodstuff to avoid. I have come to know what brands of food are reliable, but still check ingredients to make sure their recipe hasn’t changed. Companies that label their products well, are very much appreciated by coeliacs eg Barkers of Geraldine not only label which products are GF but they also highlight the word.

One of the biggest issues for me was learning about gluten free flours, gums to enhance their performance, and their effect in baking. One of my hobbies is cake decorating (a member of the National Cake Decorators’ Guild), so it has been important to get it right. Friends and work colleagues tend to be my test subjects....bless them.

Another big issue for people with Coeliac disease is contamination. Having a gluten free kitchen at home is easy. Coping with issues in the workplace staffroom (like making sure the fridge/bench/microwave doesn’t have contaminants), or when dining out is another. I distrust most restaurants and cafes. They often state they provide GF food, but upon questioning....oh but not for coeliacs. Sometimes it is obvious, by how food is stored in cabinets, uncovered alongside and amongst glutinous food. Other times staff don’t realise that a separate fryer is strictly required, or a non-contaminated hotplate, or that dressings/sauces/marinated or cured meat is not suitable. It can be very frustrating. I have been unwell a few times after dining out, along with coeliac/GF intolerant friends, which has impacted on being able to work. On the other hand, I have also experienced some exceptional restaurants. Only one, has ever asked when I was being seated, if I have any dietry requirements. I was pleasantly told that I could have most of the menu except for a few exceptions. Travel can be difficult. It is not so easy to 'just get some takeaways'. You need to plan in advance and take food with you for 'emergencies'. I often take my own food with me when visiting people or attending “meetings” where food is involved, as I don’t like to feel my host is stressed by my requirements.

For anyone newly diagnosed with coeliac disease, look at your cup half full. By that I mean be grateful that food is your medicine. You have the choice to eat healthily for you. It’s important, and a lifelong commitment. Get used to experimenting and broadening your repertoire of cooking skills. The jury is out with me on the bread issue – good luck with that! I’ve had some success but many a failure. It pays to try out the different brands of breads and homemade bread recipes. In my opinion, Allergywise is the closest in looks and texture to “normal bread”. Gently and repetitively educate your family/whanua/friends/workmates about coeliac disease and gluten free foods. If they are ever in the position to require a GF diet themselves, or have contact with other people requiring a GF diet, they will have learned from you and be more resilient to adapt. Educate yourself, eat fresh, avoid too many processed foods, and enjoy your food and life.

Stronger Together

If you would like to share your story for Coeliac Awareness Week please send your article to admin@coeliac.org.nz