Tom’s coeliac journey

Tom’s coeliac journey

Kate is a long-standing Better Food customer. 12 years ago, her son Tom was diagnosed with Coeliac Disease, a life-long auto immune disease that interferes with absorption of nutrients from food. People who have coeliac disease are unable tolerate gluten.

We asked her about what this meant for Tom, and the rest of the family.

Tom was 12 when he got his diagnosis. Do you remember how you felt when you found out?

My mum was already coeliac – it often runs in families – so it wasn’t as daunting as it might have been as I had a bit of knowledge. But I felt sorry for Tom as he’ll have it for the rest of his life.

He took it on the chin really. He had been having stomach pains, and his teachers thought he was faking it so he was happy to have proof that he wasn’t! It didn’t really sink in at that age, although he knew about it because of my mum.

How did it affect you as a family? Did you all change your diet?

It was quite easy to swap a few basic ingredients without anyone really noticing. I started using Doves Farm gluten free flour, and I introduced different food into our family repertoire, such as quinoa. The rest of us weren’t so keen on gluten-free pasta – at the time, they tended to be quite soggy; now they’ve improved. But Tom didn’t mind it so I just cooked his portion separately. I made other changes like swapping soy sauce for tamari, and found gluten-free snacks like rice cakes and corn crispbread.

For a while we got prescription bread, but he didn’t like it. I found a brand of gluten-free bread that was ok and good for making sandwiches. Luckily he wasn’t a big cereal eater anyway.

I got used to double checking labels for hidden ingredients like wheat, rye, barley. The Coeliac Society have a really helpful booklet with a list of things that you may not think of as containing gluten, and a list of safe food.

Food on-the-go was always a challenge if we were out. It was easy for the rest of us to just grab a sandwich, but for him the choices were more limited. He usually went for sushi when it was available.

How did Tom find it affected other parts of his life, i.e. at school, at friend’s houses?

He found it really awkward. Tom was at that age where he didn’t want to be different, so he didn’t tell people. He took a packed lunch to school, because otherwise he wouldn’t eat anything. Same at friends’ houses, if they didn’t know. If he was eating at a friend’s house where I knew the parents, I used to take round a bag of gluten-free pasta, or he’d be offered a baked potato, which was great – filling and no risk of gluten. It was tough when his friends were tucking into pizza he couldn’t enjoy!

Is it easier to be coeliac now than it was in those early days?

Definitely. Labelling has improved enormously. There’s a much greater selection of food available, and knowledge about what it means.

He’s left home now. Has he found ‘life in the wild’ as a coeliac sufferer a challenge?

When he first left home, he wasn’t sticking to a 100% gluten-free diet, which impacted his immune system. He picked up any bugs going around and always seemed to be ill. He’s learnt the hard way that he needs to remove gluten completely from his diet.

Nowadays he’s a very healthy eater, eating mostly organic, unfussy food that he cooks himself. It’s probably made him a better cook than he might otherwise have been, though he’s not that adventurous. He’s 24 now, and always starving!

Better Food stock a wide range of gluten free products. To find out more about a gluten free diet and some of the products we stock, read our Gluten Free Shopping Guide.

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