For the first year of her life my daughter Niamh was a normal growing baby. However, not long after she was weaned she started to lose weight, had little energy and was often very sick. The health visitors told me she was failing to thrive – a horrible term for any parent to hear. Makes you feel like a bit of a failure yourself really.
While other children her age started to walk, Niamh just sat about showing little interest in playing or crawling far. Doctors put it down to tummy bugs and told us it would get better. But it didn’t.
Thankfully, one doctor eventually spotted the signs of Coeliac Disease – a gluten intolerance. While she will have this for life, in many ways we were relieved to have a proper diagnosis ... and for something which can be managed simply by a change in diet. The change was nothing short of miraculous as five days after switching to a gluten-free diet, Niamh started to walk.
Shopping now takes a long time as every label must be checked and rechecked for gluten. And, while it's getting better, some of the gluten-free speciality food is pretty awful. Eating out can be a problem. Restaurants often don’t know what is in the food they serve – a worrying thing for all of us, I think – but a mistake by a waiter can lead to one very sick child as she recovers from eating something we were told was OK.
But there are places which are brilliant. Vittoria’s is now a regular haunt for us. Kiddy-friendly and very knowlegeable about their food – the place is brilliant. Makes good business sense as well, though, as I know many coeliac families who go there.
Some things are still hard, however, like trying to explain to a 2-year old why she can’t have a piece of cake at a birthday party and must have the stuff which mum brought instead. Or in the future – watching all her friends go to McDonalds or Pizza Hut and not being able to go herself.
Seeing the difference a correct diagnosis made to my daughter has made me want to campaign to raise awareness of the disease.
First, if you think there is something wrong with your child be pushy about it. We often just accept what folk in white coats tell us about our children, but I’m learning parents do know best (most of the time at least). Knowledge of coeliac amongst most GPs and Health Visitors is still poor. That is despite the fact that 1 in 100 people have the disease and that it can be easily tested for through a blood sample. I know of some people who have waited months and sometimes years in discomfort and pain before finally getting a diagnosis. That is clearly unacceptable.
We also need to raise awareness in nurseries and schools. While my daughter’s nursery has adapted well, we had to take them through everything step by step: from what they can cook to how to make gluten-free playdough. Fine for our family, but what if others meet more resistance?
And for all you businesses out there who don’t cater for anyone with a gluten intolerance – wake up to all the folk who would flock to you if you became renowned on the gluten-free grapevine. Like the chippie who gets families travelling from miles around to come to their once-a-month gluten-free batter special day.
But it shouldn’t be a special event for most places – gluten-free food can be as tasty as any other food. You just need to put in a bit of effort and then publicise your hard work. Folk will come – me and the rest of the family for a start.
[Spurtle's online Directory will start listing Edinburgh eateries where coeliacs' needs are understood and catered for. Send us your recommendations.]