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.
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:
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.
How do you manage with a coeliac child when they’re diagnosed? It’s all a bit of a shock.
It’s nearly 5 years since we had that one blood test that started this our journey which has led us to this point. Our diagnosis with coeliac disease.
We’d had so many GP appointments, antibiotics, seen consultants, and each time it was “she’s growing, her bodies still fighting off the infection, inflamed lymph glands, she’ll grow out of it”.
OMG, she’ll grow out of it.
In January 2018 I was at my wits end. I’d literally had enough.
We’d battled through September 2017 when yet again she was struck down with another horrendous ear infection. It’d go from one side to the other, antibiotics given that didn’t do the job. She’d then go deaf. Yes, deaf, in one or both ears. For no reason. Her ears would just go pop. Then about 3 weeks later they’d pop again, and she’d have to wear ear defenders to school and in the classroom as she was so sensitive.
We were both exhausted. School pressure, work pressure, family life. We were both at breaking point.
But it was Christmas 2017 that things really took a turn. I looked at my child and she looked so very ill. This time I was so worried. She looked like a ghost. Now, she’s a child that is pale, always has been but give her 5 minutes in the sun and she catches the sun like no ones business. She literally gets sock marks!
But this time, I was panicking. She was drinking water (and she hates water) like no ones business. That had me thinking that she was beginning to develop diabetes. But the fact she was as white as a sheet made me think that we had bigger problems. But what they were, I’d no idea.
So January 2018, we had a doctors appointment. We saw our fabulous locum GP, who she’d already taken a dislike to as he’d swabbed her ears previously & it had hurt. She wasn’t impressed! But he listened. He looked and he agreed that we needed a blood test. The diabetes test was negative, but she was obviously not herself and didn’t look well either.
It was a Monday, so as we were already late for school, we set off to the hospital for the blood tests. I tried to explain the procedure to her as we were on route. But she didn’t listen!
Whilst it was an entertaining blood test “why are you stabbing me”, “mum” “i want chocolate”. After 7 vials were filled with blood, yes for sure our GP was being thorough & one bar of chocolate later we were heading home to await the results.
The results
This was before the pandemic. I was sat in a meeting in London when the phone ran. It was just 3 days after the blood tests were taken. I was told that the tests had shown something and I needed to make an appointment. Ok great, when? 2 weeks time was the earliest phone call. 2 weeks? Really? Receptionists need to appreciate the panic that we go through when we don’t have information & worried about our child.
Two weeks went by, and a different GP dropped the bombshell of Coeliac Disease by phone. What? I’m not sure I remember the rest of the call, but luckily our first GP called regardless as he’d wanted to discuss it in person. We went in & lucky for us he had experience with coeliac disease. Our first blood test TTG results were 128. Depending on your local lab, a normal range is 0-7 (or 0-20). Either way, we were 10x the normal limit. Sufficient to say she had coeliac disease.
Don’t change the diet yet
I’m going to fast track a referral for you
Keep eating gluten until you see the consultant
We left in a bit of a whirlwind, but at least we now had a diagnosis. But what did it all mean. I’d vaguely heard about the disease, it was covered in college when I trained to be a nursery nurse, but how was this going to affect her life or ours? We were going to have to find out.
Official diagnosis with the Consultant
We were lucky enough to have private health care at the time. We were going to have to wait at least 6mths to be seen so on the NHS, so I called them, found 2 specialists based in Cambridge at the Nuffield Hospital and we had an appointment on the 8th February.
The Consultant took one look at her test results & said, I can categorically say you have coeliac disease. As your test results are so high, I don’t need to do an endoscopy but I do need to do a further blood test which will confirm your results, and a gene test to see your markers there too. It will show up if it’s hereditary & you’ll be likely to pass it on. Her blood test results this time were 238 & she’s positive for both markers. The whole family were tested & negative on the initial blood test.
She explained about the villi in the small intestines that shrink. I still have the envelope she drew on in a file. She said that whilst prescriptions for GF items in the UK are being taken away, we’re still lucky in the fact that it’s an auto immune disease that can be treated by diet alone. That’s amazing in itself.
What next
Then we started our journey into coeliac disease. Much is documented on the website, Facebook and Instagram posts.
The first shop of over £100 spent on GF foods failed miserably. She either didn’t like it, it tasted differently, it just was awful.
So we did it our way. I learnt to cook anything and everything gluten free. Whether there was a recipe for it or not – I just converted it to be safe.
I changed everything we’d use as a family – breakfast cereals, pasta, condiments, soy sauce (often forgotten about!), stock cubes. So anything I reached for was safe, I didn’t have to double think.
But don’t get me wrong, it was hard at first. The first pizza attempt was a total disaster. They and the tins ended up in the bin.
It got better & easier. Parties and sleep overs were harder but manageable, the last year of primary school was good at the time, the secondary and upper have been harder. Literally no options for her other than a jacket potato. And she believes potatoes should only be chips!
And the point of it all? To help my child and her health improve. You only learn about the things that affect you. It’s how it goes. When you are at the centre of the storm, it’s all you see, feel & breathe. When you are outside of it, not affected, you can’t see the dangers that I see when eating out, or at family events.
Now, 5yrs in, we’re winning. And from our journey, helping other mums like me. Helping mums understand what they need to know and do to help their children adjust and adapt to their new lifestyle through my book. First, in 2021, I set up Gluten Free Little Cook, creating baking kits for kids with coeliac disease. Making kids smile, have fun and make safe tasty treats. One family tells me ‘I bring joy to their family’. That’s enough to make me cry!
Surprise IcingMothers Day GF baking kitGF cookies & cutters
I wrote the book as I saw that the help given to us mums, parents, is different. You might get a great GP who knows the processes, you might not. You might get information in the form of leaflets, you might not. There’s no overall standard. And I feel that is a huge area that needs a change. You need to have a reference point without searching the internet or Facebook groups.
In the UK we’ve a great charity, Coeliac UK, who everyone should always refer to in the first instance as their guidance is for the UK specifically. They’ve a school pack you can download and pass onto your school. But as a mum, I wanted something different, I wanted to ask questions, talk to someone that had been there, done that, who’d have answers so I’d know what to do, how to do it. I just couldn’t find it.
So, I wrote it myself. Me! Write a book! Goodness. I truly didn’t see that one coming. Would it win a Pulitzer Prize? Nah! But that’s not the point. But, it is doing what it needs to do.
It’s helping give mums confidence, help them not panic, to lessen their overwhelm in the beginning, by giving them simple and clear explanations as to why you need to do what you have to do. The book helps you understand the what, why and how. It makes it easier to get your head round everything. It makes life easier. That’s what it’s all about.
Oh, and remembering to ALWAYS have a snack in your bag as a back up!! And a water bottle specifically for them as they can’t share!!
I can help you too – click here to grab your copy of my book, direct from Amazon today. It will help make your life so much easier and your first steps into your coeliac journey, that little bit less overwhelming. I’ve been there, I totally understand.
Time to find a new restaurant locally that does gluten free & is coeliac safe.
Ahhhh such fun!
It’s approaching my eldest daughter’s 16th birthday. She adapted well to her sister’s diet over the past four years. Keeping any non gluten free items at arms length, eating in the garden in the early days with things that make lots of crumbs!
She dealt with us walking in and out of restaurants so we can eat together. She has felt left out & overlooked. That wasn’t the intention. It’s easy to feed a muggle; someone who can eat normal gluten foods. Food is available everywhere.
Or that sometimes it seems that I go out far more prepared for the gluten free child, than her with snacks, as you can buy anything non gluten free from anywhere without worrying whether if it is gluten free or contaminated.
Gluten Free Birthday Celebrations
Time to try a New Restaurant
I’m locating a carvery for her birthday lunch. A challenge to find one that’ll be able to cater for us all & be coeliac safe. But, when it’s your 16th birthday, you should get what you want. And she wants a carvery & lots of Yorkshire puddings. When I say lots, I mean lots!
I have booked a table at our regular safe restaurant, but it’s a drive to get there, and she doesn’t want to sit in the car for ages.
So we’re trying a new local restaurant to us.
After my initial chat, I’m not too sure. I’ll be dropping by to see and chat in person before the big day. The conversation went something along the lines of this:
Me: “Hi, I need a table for 6. Do you do gluten free food. I have a daughter that has coeliac disease”
Restaurant: “Yes, we do gluten free. How bad is her allergy, or is it more of an intolerance?”
Me: “Excuse me?, it’s not either, it’s an auto immune disease”
Restaurant: “Oh. We can tell you what is safe on the carvery, she can’t have the Yorkshire Puddings. Or we can prepare her food in the kitchen if she’s really allergic”.
Me: “It’s not an allergy. She doesn’t like a carvery, she likes chips. Do you cook chips on a Sunday?”
Restaurant: “Yes”.
Me: “Are they gluten free?”
Restaurant: “Yes they are”
Me: “Do you have a separate fryer for the chips, or are they cooked with other items that contain gluten?”
Restaurant: “Yes. They’re cooked with other items”
Me: “Then they aren’t gluten free. Can you cook her oven chips?”
Restaurant: “Yes, would you like to make a booking. I’ll make a note of your requirements”.
So do we risk it?
Infuriating isn’t it. There is gluten free and there is gluten free that is coeliac safe. That takes extra care, precautions and thought.
To summarise, Coeliac Disease isn’t an allergy. It’s not a food fad or an intolerance. It’s an auto immune disease. It means that your body’s immediate reaction is to go into fight mode. That it attacks her body from inside.
One tiny crumb could gluten my daughter. That means she’ll have eaten gluten. And the longer that she’s off gluten, the more severe her reaction could be. She hasn’t been glutened in ages. I certainly don’t want that to occur, to make her ill in any way, so I have to ask these kind of questions & have these conversations on a regular basis, especially when we try new restaurants.
Before, she would have a sore tummy & then sleep. For a long time.
Coeliac Awareness Week 9-13th May
This week isCoeliac Awareness Week. A week to raise awareness on the wonder & challenges of a coeliac diet. A coeliac sufferer isn’t being difficult. They just don’t want to be ill from something so simple as one tiny crumb.
Gluten is in many things, not just wheat. Which is why it is hard for someone with coeliac disease to eat out. It’s in Barley, Rye, Oats & Wheat. It could be in anything. Drinks, food, sweets, crisps. Everything has to be checked & evaluated. Including the item it gets served with. If the tongs serving the gluten free chips were used to serve gluten items, that’s cross contamination.
Eating out is a risk. But we have to try so she learns its possible. I’m going to drop into the venue & have a chat so that I’m more comfortable that they do understand. If after that conversation they don’t show a level of understanding, well, it’s fair to say, I’ll be looking to find another venue this weekend!!
Oh yay! Your child, your coeliac child has a playdate invitation. They are being treated normally, being included. Yay!
And then the dread & fear sets in…. or it always does for me.
Maybe your child has just started the school, joined the class, you don’t know the parents. But your child is excited & looking forward to going to play at their new friends house.
Maybe your child has just be diagnosed as having Coeliac Disease. And you have yet to explain to your friends, your child’s friends what they can and can’t have going forward.
You have to explain it all over again…. what they can and can’t have. You have to trust someone to not ‘gluten’ your child. But the smile on their face at being invited to a friends house has lit them up.
Well, you’re in the right place.
I’ve already negotiated those hurdles with my daughter who was diagnosed in 2018 with the disease. We’ve found the basics that you need to cover for a playdate, a sleepover and parties. At a best guess, you will receive at least 15+ party invitations in a year based on an average class of 30.
How to manage a party with a coeliac child
So how do you manage it all?
It’s exciting when your coeliac child has a playdate invitation.
First, they’ve been invited!! (Yay) In the second instance, meet the parent of the other child. Say hi, get the intros done. Then let them know that your child has Coeliac Disease & briefly let them know that they need special foods excluding gluten/wheat & that your happy to chat with them about your child’s needs to make it as easy as possible for them.
See, it’s easy! They don’t need to know straight off that it’s key to minimise all cross contamination. You can let them know gently.
My Top Tips
Inform the host parent gently of the requirements needed to keep your child safe. See what they are having, discuss foods, snacks and drinks so that you’ll know what to provide as suitable safe alternatives if you have to.
Give them a guideline on labels – what they are looking out for.
Suggest some suitable snacks – offer to supply ones for your child if that will help
Suggest that the children all have the same GF foods for tea & dessert so that will minimise any cross contamination issues, and at the same time keep them the same as everyone else. Fitting in is so important at a young age.
To make your life easier, I’ve put all of this information & more into an download covering Playdates, Parties, BBQs & Sleepovers with a two page handout to give to the host parent.
They’ve then a handy guide to refer to whilst your child is in their care so that they have some guidance as to what to do & how to manage keeping your child safe.
It shouldn’t be hard to let your child be normal, have friends over or go over to their friends houses. With this guide, both you and your host parent can manage it all together safely.
They’ll want to go to those parties, it can be done, armed with hand wipes, hand gel and back up snacks/lunch boxes. It’s how you manage their excitement, what they can & can’t have, and sometimes their utter disappointment in not joining in.
It’s not always easy, but it’s doable if you think outside of the box!
