PARENTS

My Son Has Coeliac Disease

17/05/2012 16:20 | Updated 22 May 2015

When Kate Hardie's young son William was diagnosed with Coeliac disease, she faced a sharp learning curve in managing his condition and diet. An auto-immune disease, it means gluten triggers a reaction that damages the small intestine and can lead to further complications like anaemia, osteoporosis and even cancer if left undetected and unmanaged. For these reasons, following a strict gluten-free diet is essential.

Now Kate, 36, is writing a recipe book to help other parents in the same position. For Coeliac Awareness Week, (May 14-20) she talked to Parentdish about her experience.

What first made you suspect that William might have a problem affecting his intestines?

Boxing Day 2010 marked the first of 76 consecutive days that he was sick once a day. There was no pattern to it and it always came as a surprise as he was fine one minute, and sick the next. Of course initially we put it down to a stomach bug, but as the days progressed, as his mum I just knew there was something more to it. William's stomach looked extremely distended and swelled, like a tight little drum, and he would wake every hour through the night, screaming in obvious discomfort.

Coeliac disease is notoriously under-diagnosed, was it difficult getting it confirmed?

Frustratingly, yes. It took five visits to our GP as well as several telephone consultations over many months before we were finally listened to. In the end I insisted that further tests be carried out. Had I not researched the possible causes for this happening, who knows how many more visits to our GP we would have had.

How old was William when he was diagnosed?

He was 20 months old, which is very early to find out, so in that respect we were lucky that any intestinal damage would be minimised purely by following a life-long change to his diet.

What did the diagnosis mean for William's diet and your family life?

It involved starting a gluten-free diet immediately, which in one way made it easier as I just had to get on with it. However, in reality, all of a sudden I was analysing every single item of food crossing his mouth, and I think I always will.

The day after diagnosis William was invited to a birthday party and this seemed very daunting as I knew I would have to bring his party food. The pressure was on to make it appear the same as all the other children's so that he didn't feel excluded.

Simple changes also had to be made at home, like having a separate preparation area and another toaster to avoid cross contamination. Meal times worked quite well as I cooked the same food for his big sister Evie so there were no arguments, and actually, on a positive note, all meals were home cooked with lots of fresh fish, meat and vegetables - not a bad change to anyone's diet.

Once he had begun a gluten-free diet, how long did it take for the effect to become apparent?

It was dramatic as William was not sick for the first time in months. His distended stomach also went back to normal and he appeared more relaxed in himself. Importantly, his intestine began to repair.

What has surprised you about having a Coeliac child?

The number of products that contain gluten. It is not always obvious as some things contain bi-products that are not suitable. On the flip side, many products are naturally gluten free but don't advertise as such.

What's the hardest thing about it?

Getting to know your way around the supermarket is a lengthy process. You don't necessarily need to be limited to the Free From aisle, but it does take time to know your options.

How does William deal with his diet?

In one way we were lucky that he was diagnosed so young as it will be a way of life for him that he has always known. But the thing that constantly tugs at our heartstrings is when he looks up at us and says in a little voice: "Can I eat it?".

Your experience in providing for a young family with a Coeliac child has led you to start writing a recipe book for Coeliac children. How did this come about?

I discovered there was a very limited selection of books out there aimed specifically at easy family meals to guide you through the first few weeks and help you adapt.

Had there been a book I could have referred to when William was diagnosed, I think it would have helped us deal with our new family lifestyle more easily.

The book also covers party food, lunch box ideas and inspiring tasty snacks. I really enjoy cooking anyway so to create a recipe book that will help William and other young people with this auto-immune disease is really important to me and very close to my heart. Because William constantly asks, 'Can I eat it?' I have decided that is the perfect title for the book.

There is little awareness of Coeliac disease, does a general lack of understanding cause you problems?

We like to eat out often, but it can be frustrating at some restaurants. But times are changing though and many restaurants do cater for a wide variety of dietary requirements now.

Is there enough support out there?

The Coeliac Society website is brilliant in terms of answering any worries or concerns and is constantly updated. For example at Easter, they provided a list of popular brands of Easter eggs that are suitable for Coeliacs. Very important for a two-and-a-half-year-old!

For more information, and help and support if you or a family member has Coeliac disease, visit the Coeliac Socitey online at Coeliac.org.uk.

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