5 things to do if your child gets coeliac disease

I'm really lucky coeliac disease didn't happen to me until my twenties. When I think about all the birthday parties I went to as a child, I was able to have whatever everyone else had. There'd be a thrilling buffet of sandwiches in triangles, butterfly cakes and those exciting tiny biscuits with piped icing on. I always felt included. Everyone else was the same.

So it's always sad to hear children's experiences of missing out.

The situation was put into perspective for me recently by Fiona, a mother of a newly-diagnosed coeliac daughter.

Fiona's story:

My daughter is having her first hard day since her diagnosis 2 weeks ago.

This morning we nipped into Aldi on our way to a playgroup, because at the playgroup they give out biscuits. They had no gluten-free treats and she was gutted. We didn’t have time to go anywhere else as she didn’t want to miss playgroup. I explained to her she would be the only one without a treat and I was happy to miss playgroup and go to a park instead. But she insisted. So then at the playgroup everyone had biscuits (including her brother and sister) except her. And she was sad.

Whilst at playgroup a friend of hers gave her a party bag from her birthday bash this weekend and it was full of things she can’t eat including a KitKat, Maoam* sweets and Malteasers. I therefore had to take them off her. She was upset but stayed strong.

We got home and she was hungry. She went to get a pack of crisps and I had to explain that she can’t have them as they have gluten in. We do have Pom-Bears for her but she’s bored of them and loves prawn cocktail flavour so she burst into tears.

It all came pouring out:

“I can’t have anything.”

“All my favourite things have gluten in.”

“Why have I got coeliac disease and no-one else has?”

(N.B. Maoam sweets have ingredients that are often gluten-free but their manufacturing processes mean their gluten levels are above the 20ppm guideline issued by Coeliac UK.)

They're good questions. And it's heartbreaking she's having to ask them.

So what can you do?

1. Don't ignore the negatives

If a child's upset they can't have the same food as everyone else, don't be tempted to ignore their sadness. Yes, it's important to be positive but not before acknowledging their very real frustrations. Sympathise with them over things they can't do anymore (like eating a friend's birthday cake). Agree how upsetting it is not to be able to share lunch with friends. Make sure they know you understand their feelings are being heard.

2. Think of superhero ways to solve problems (& exaggerate!)

Once you've established things aren't great, invite your child to think of superpower ways round problems and be as daft as you like. How about flying gluten-free cakes which land on your plate when you need them? What if a pantomime fairy waved a magic wand and all the gluten in the world disappeared? How about a gluten-free cupcake machine where you could put your money in and a cupcake would come out? (Actually, there's a cupcake ATM doing just that in Disney Springs, America. Seems like daft ideas can really take off!)

3. Put together a plan

Identify the times where your child feels life might be a bit tough. Now think of realistic ways these times can be made better. Can you chat to school about gluten-free lunch options being prepared without cross-contamination? Can you persuade friends to have gluten-free birthday cakes for their children's parties? Can you take some gluten-free biscuits (separately wrapped) to your local playgroup? Could you have a gluten-free cupcake decorating party for your child's birthday so all the children can be involved?

4. Make food from scratch

Raining outside? What a great time to get the mixing bowl out and make some gluten-free goodies in the kitchen! Look at something that will be fun for the kids (like creating shapes out of dough or edible painting). You get bonus points if you use naturally gluten-free ingredients so they don't feel different from everyone else.

5. Find the gluten-free alternatives

There isn't always time to make your own gluten-free food so take a look at your child's favourite foods and see if there's a coeliac-friendly option. Gluten-free & vegan Cornettos are now sold at most supermarkets. M&S do sweets with a GF symbol. Many flavours of Kettle Chips are naturally gluten-free. Have a trip round the supermarket with your children and invite them to be food detectives. Allow them (e.g.) a £5 credit to find gluten-free goodies of their choosing. Making it into a family activity may help your coeliac child feel closer to their siblings.

Be reassured that things take time

Are you still wondering about Fiona's daughter? Then put your mind at rest! She managed to find a whole set of foods her daughter loves and here's the proof (it's like Christmas has come early!):

Finally, don't panic if it takes a while to build up your knowledge of what they can and can't have. Believe it or not, the time will come when things seem fairly straightforward. You may well find yourself dishing out advice to the next parent whose child has just been given a coeliac diagnosis.

What are your experiences of your child's new coeliac diagnosis?