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!

Saturday, 2 May 2015

Guilt-free dining please

I got caught by a wave of guilt the other day. Alex was in school and I was out with Katya, who doesn't have Coeliacs. I'd promised her a treat and was starting to go through in my head the places where we could go, when I realised we could go anywhere! We could walk into any cafe we wanted and have anything on the menu with out checking every ingredient and cooking method. We wouldn't have to walk out again because they couldn't cater for us. We didn't have to explain anything to anyone. It felt liberating and a little bit naughty, like playing hookie from school. For about 2 minutes. And then I felt guilty because I was glad Alex wasn't with us.

However, it made me reflect on the recent (very limited) news coverage of Prue Leith, Albert Roux and other leading chefs complaining because due to new EU legislation on allergen labelling they will be forced to identify whether their dishes contain any of 14 specific allergens, including gluten. Apparently it will be a faff for them and will curb their spontaneity if they have to list on the menu whether the dishes contain these ingredients- they feel it should be up to the customer to find out, not up to them to make it explicit. Seriously guys?! It's a faff to explain to everyone, from the greeter to the varied waiting staff that your daughter has Coeliacs, and to wait for 20 minutes for them to check whether she can have anything and to realise that there's only one thing she can have anyway (jacket potato and beans) and to double check every item they bring to the table because there's a suspicious looking garnish on the plate. I suspect many people with Coeliacs stick to a few restaurants they are comfortable with and they know can cater for them safely. If you did highlight your dishes that contained gluten, you could make your life, your waiting staff's, and my life that little bit easier, and increase your client base. (Heck you could charge 3 times the price for GF dishes- all the food manufacturers do!)

So regardless of thoughts on the EU, referenda, elections etc, this is one piece of legislation that I hope gets enforced and we can eat out spontaneously with any/all of our children, without feeling guilty!