IT TAKES TWO: A DOUBLE DIAGNOSIS, DECADES APART

James and Kerrie Barnes – or rather Jimmy and Kez – find it curious that they’re both living with coeliac disease, and with very different experiences. But the parents of three from Bacchus Marsh Victoria have a warmth, sense of humour and positivity that is helping them transform a coeliac disease diagnosis into an opportunity for the whole family to enjoy a healthy life to the fullest.

We have been together for 28 years now; we first met at work back in 1996. We were only in our early twenties and got to know each other slowly (until she kissed me in the lift). We married eight years later in Bali, had three daughters in five years – Lily, Abby and Jessica – and here we are today with our eldest daughter doing Year 12 exams.

When we first met, Kez had lived a lifetime quietly dealing with the disease and from memory it had very little impact. So much so that I constantly forgot to consider Kez in the early days when making food. I’m not proud of that considering how much help Kez has been to me 28 years later.

For me, living with coeliac disease is entirely different to Kerrie’s experience of growing up gluten-free. There are so many products now in the supermarket and eating out is easier with many options.

I recall times when we were in our twenties there were two things she would occasionally indulge in: pizza and beer. As a result, among other symptoms, Kez would just fall asleep. When she was younger her mother was very strict with her diet so much so that she would go along to birthday parties with her own bag of goodies which she found very embarrassing.

I can recall being affected by the disease at least five years prior to my diagnosis with symptoms of accelerated bowl movements and very bad indigestion which came out as chest pain – which made me feel like I had a heart problem. Tiredness was only something I realised I was experiencing once I changed my diet and my energy levels lifted. I also had inflammation in my joints, which sometimes became severe. I had been to see doctors on several occasions and it wasn’t until one doctor suggested we throw in a blood test for coeliac disease that we found the answer to my problems

I didn’t feel sad or dejected by the diagnosis, more relief that I had answers and I’m sure my attitude and ability to accept the disease was helped by having support from Kez. When I got diagnosed I had to stay on a normal diet until my biopsy and hated it. After the procedure I was ready to take it on, and so was Kez in the best way.

I love cooking and now that fast food is so limited for me, I put so much more time into good, healthy cooking. And with three daughters that don’t deserve to be impacted by my diagnosis, cooking the best meals became my focus. My diet improved along with my energy levels, and I had a genuine focus on my wellbeing. I do feel the disease is difficult but living well is achievable. Maybe it’s the right time in life for me, but I see nothing but the good.

We took this on with so much positivity and I personally loved it when the kids would say, “Dad it’s not all about you; Mum had the disease first.” It does help me reflect on how hard it must be, being the only one in a family making sacrifices. I do know that being the second makes my journey so much easier.

You couldn’t buy gluten-free bread when I was little. My mum would make it for me, and it was horrible and just fell apart. We would go to McDonald’s once a year and the effort my mum had to go to and the strange looks we would get when she would order a plain meat patty for me was so embarrassing as a child.

I grew up in a Catholic family. My mother would have the nuns make me a special host out of rice flour and we had to wrap it in coloured tissue paper so the priest would know it was for me at communion. Things I look back on now just wouldn’t happen today; my mother was very good in making sure I ate the right things. I feel it would be harder to be diagnosed as an adult because you have engrained eating habits that suddenly need to change completely.

I was very surprised and somewhat disappointed in myself that I didn’t consider Jimmy’s symptoms might have been coeliac disease and perhaps he could have been diagnosed sooner. It never crossed my mind, actually. I laughed when after the diagnosis he jokingly asked the doctor if coeliac disease could be sexually transmitted (the doctor didn’t laugh).

Our girls have all been tested, one of our daughters has one of the genes but it hasn’t presented in her yet.

Having had coeliac disease since I was very young I don’t know any different; when cooking for the family I would just substitute pasta for example to gluten-free pasta, only for myself. Today, we eat more fresh produce to avoid hidden gluten in packaged food. We are exploring the Mediterranean diet, which seems to fit quite well with gluten-free dietary requirements and we’re enjoying the variety. Jimmy loves cooking so he has made it really fun eating interesting new things.

The kids were very supportive of Jimmy after his diagnosis. I’m very proud of the way he has taken on this new challenge in his life – I love that he has embraced this change and sees it as a way to feel better after feeling crappy for so long.

As told to Selina Altomonte