Wednesday, 13 May 2015

Can she be gluten-free just like me?

'I wish my kid was sick', said no-one ever (unless they're very very sick themselves, but let's not go there). However, in the run up to our third daughter being born recently, Alexandra mentioned a few times that she hoped her new sister would be 'gluten-free'. Although I don't share her hopes for Zofia (mine are more along the lines of 'I hope she won't turn out to be a psychopath','I hope she'll make a better fist of using Twitter than I have', 'I hope she'll chose me a good nursing home in my dotage')  I can completely understand where she's coming from.

Alexandra is really good about her Coeliac disease. It's all she's really known and she is well aware of the outcome if she eats gluten. She usually just accepts that she can't have what other people have without complaint. However, recently she has been more aware of her difference and the fact that she can't just join in when people are eating.

In fairness, we, and those involved in Alex's life (including school) try to ensure that her food and treats are comparable to what her peers are having. I usually have some sweets or a muffin in my bag in case we are involved in a spontaneous treat or surprise which involved cakes or biscuits and we always bring a 'picnic' to parties and events. However, I still get caught off guard at times and have to promise Alex that I'll get her 'something nice' later, as she sits watching other children munch on biscuits or crisps. It's awful. She accepts it quietly with sagging shoulders and lowered head. Occasionally she gets upset- 'it's just not fair mummy' and I have to agree- it's not.

Sometimes it's the small things that cause tears- like Katya having a piece of my toast. I will make toast for Alex using her bread and butter, but that's not really what she wants. It's sharing some of mine, being part of things, joining in without standing out that she craves.

So, rather than genuinely hoping that Zofia has a serious auto-immune illness, I think Alex really just wants someone to share what she goes through.  As she gets older I think she will realise that she is not as alone as she thinks. There are a large number of people with undiagnosed Coeliac disease, and this week is Coeliac awareness week. The Coeliac society is encouraging people to become aware of the symptoms of the disease and to push for proper testing, as many people are misdiagnosed with other conditions such as IBS. Visit the website for more info on symptoms and diagnosis.

By the way, although I don't long for Zofia to have Coeliacs, I know there's a good chance she will as it's genetic, and it won't be the end of the world if she does- at least she'll have her big sister for company!

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