My upbringing was very culturally diverse. Mum is Egyptian and dad is Polish, so one side of the family eats Arabic food and the other side has Polish food. Basically, I used to eat everything under the sun but I grew up eating pierogi (Central European-style dumplings) and Lebanese wrap bread: both which are wheat-heavy.
But at the start of 2014, when I was in my last year of high school, I started to get light dizzy spells. By that point, I was so used to living with stomach issues on a day-to-day basis [that I had just accepted it as part of normal life]. It was only when the dizziness started that I got checked out by my GP.
I had a blood test for a range of things and the results came back showing that I was highly positive for coeliac disease. I then had a gastroscopy and was told I definitely had coeliac disease.
I adopted a gluten-free lifestyle knowing that I am doing it for my health and the long-term benefits. I don’t want to face bigger health problems down the road.
At the time, I didn’t know what ‘coeliac disease’ was. But I soon learned that if I ate gluten, I’d have really bad stomach pains. Paracetamol wouldn’t fix it and I just couldn’t work or study. I had to take time out.
I’ve been gluten-free ever since. I adopted a gluten-free lifestyle knowing that I am doing it for my health and the long-term benefits. I don’t want to face bigger health problems down the road.
It took a while for me to [grasp] how strict I had to be in following a gluten-free diet. What made the transition easier for me was my mum – she was a great support. She did a lot of research to find out what I could eat but that involved a lot of trial and error.
I now can’t have Lebanese bread or pierogi. But mum makes pretty much everything else: all our pastas are gluten-free and she cooks traditional Egyptian food by substituting seasonings, spices and sauces with gluten-free options.
A lot of people think of it as a lifestyle choice or a health fad. They don’t understand that not eating gluten is how to treat what I have: an autoimmune illness that impacts one-in-70 Australians.
It was very hard for both my grandparents to understand what coeliac disease was and for us to explain it to them, as they speak minimal English. But it’s unbelievable: they’ve completely got the hang of gluten-free cooking. Now, my Egyptian grandmother [on my mother’s side] makes rice and meat wrapped in vine leaves and cabbage rolls with gluten-free seasoning.
At home, all the relevant changes are in place to ensure I only eat gluten-free food. But the second I step out of the house, it becomes a lot more complicated.
You never really know for certain that the food served at ‘normal’ restaurants or cafes will be truly gluten-free because there’s always a risk of cross-contamination. The surest way to eat out when you live with coeliac disease is to go to restaurants that have been accredited by Coeliac Australia. Their menus feature a unique ‘GF’ symbol next to gluten-free meals. This claim is governed by Food Standards Australia New Zealand so you know that the meals with this symbol are genuinely gluten-free.
A real need to go gluten-free
There’s a real stigma about being gluten-free. A lot of people think of it as a lifestyle choice or a health fad. They don’t understand that not eating gluten is how to treat what I have: an autoimmune illness that impacts one-in-70 Australians. There’s currently no cure.
Sometimes, people offer me food that has gluten in it and asks me to ‘just try a little bit’. I have to then explain that I can’t have any at all, not even a little bit. It’s frustrating. I feel like I’m being a nuisance or making a big deal about something that is nothing.
Because the impact of eating gluten for me is all very internal, people don’t think of it as something serious.
If it was a nut allergy, for example, and I ate something that had nuts in it, you would see some kind of physical reaction. Because the impact of eating gluten for me is all very internal, people don’t think of it as something serious. It takes a while to explain the long-term, serious effects of eating gluten for someone who has coeliac disease. But I have learned to be patient.
To be honest, I’ve been living with coeliac disease for five years now. I’m so used to it and being gluten-free is the only thing I’ve ever known as an adult. It does have its moments at times, but you just make do.
Coeliac Awareness Week runs until Wednesday 20 March. For more information and resources on coeliac disease, eating gluten-free foods or the Coeliac Australia accreditation program for businesses, visit Coeliac Australia online.
If you or someone you know is in need of support for coeliac disease, please call Coeliac Australia's helpline on 1300 458 836.