Why write a Coeliac Survival Guide for Kids? When I looked back to my child’s diagnosis, there wasn’t much to show my child about her diagnosis, what it meant, how we were going to live going forward. She didn’t even get a sticker or a colouring sheet. Just adult conversation. Being talked about and to.
So what is there to help your child when diagnosed with Coeliac Disease? I had a quick look, and there are some story books but not what I would’ve wanted for her. It had to be something different.
So, we, myself and my two teens, one who has Coeliac Disease, decided we’d do something about it.
Books for Kids with Coeliac Disease
There are three books when I searched on the big online store. All fab I’m sure, but I wanted something for my child that was a bit different, that would give her clear and simple information in a fun way.
It all started one Friday night about 4 weeks before her diagnosis anniversary. 5 years on the 8th Feb since we’ve been gluten free, living with Coeliac Disease. We’ve learnt a lot, put all our knowledge into my other book Coeliac Disease and your Child – What every parent needs to know, so now we’ve created one to help the kids too! In a fun, positive way!
Brainstorm!
So we all hit the office to thrash out what we thought we could put into the book. Cross contamination, what it does to the body, how it makes you feel, how to survive parties, food to eat, as well as fun activities. Making Coeliac Disease positive but acknowledging sometimes it’s hard, not fun & a few activities so that they can find a way to talk to you, their parents.
Fun Getting Creative
It started so well. But as ever, there are challenges, just like life with Coeliac Disease. After hitting the computer for 3hrs solid, it looked fab. But, for the first time ever, Canva crashed and 3hrs work disappeared. There were some choice words, and no matter what Canva did (they were very helpful) it was gone. So round two commenced.
What is in it?
Pretty much everything that a child needs to know. I wanted my child to be informed. She was 9 when diagnosed. I had the great pleasure of seeing her questioning the staff in our local Tesco to see if a lolly had gluten in it. She was confident enough to ask the question was it safe, to make sure she wasn’t ill.
There are lots of sections, all light with a bit of humour weaved through it. Such as:

- What is Coeliac Disease?
- Cross contamination – but they’re words for adults! I cover it under ‘Don’t touch my food’
- What is gluten?
- How long will I have it?
- How does it make you feel?
- Why do I have to have blood tests – and key tips about magic cream!
- How to tell your friends
- Baking recipes and more! (As used in our baking kits)
It’s more than just a journal
It has space for children to write or draw, to fill in simple information about themselves, some pages to colour, bright colourful pictures to catch their eye, discussion about farts and poo! Hints and tips on how to attend and enjoy parties – as they can be tough especially when others are tucking in around the table and you are eating out of a packed lunch box.
It managed to get uploaded and onto Amazon on Wednesday 8th February. 5 years to the day that she was diagnosed officially by a consultant in Cambridge. I must send her a book! Two blood tests to get a diagnosis, with results of 128 & 238 – my daughter’s consultant said there was no need for an endoscopy, the results spoke for themselves.
We’ve come a long way, we’ve made mistakes, we learnt lots, and we’re glad that we can help others to understand it’s hard, but doable from a child’s perspective.
Grab your copy today – it’s on sale at £12.99 until Monday 13th February then reverts to its regular price of £14.99.
It will help give your child the confidence he or she needs to tackle what is ahead of them. Knowing there are others like them out there, and they’re doing it together.
Lots of love
Nicky