Your child has a coeliac disease diagnosis. What do you do next? Until you see a Consultant, firstly, keep gluten in their diet.
GP’s in the UK cannot diagnose coeliac disease alone. Your child must be referred to a Consultant for additional tests. They arrange for the second blood test and potentially an endoscopy.
Throughout this time, until the Consultant says so, don’t give up gluten!
Coeliac diagnosis and next steps
If you’re lucky, you get a leaflet. Equally you might not receive anything. And that’s why I wrote my book. With coeliac disease, you are often left to find out your own information.
Once diagnosed, your child should be referred to a dietitian for diet advice and monitoring.
They’ll have yearly checks going forward; measuring height, weight and a blood check for iron, calcium and other checks.
Coeliac UK are the main charity and you should consider joining one of their subscriptions – you can choose from a digital option or have a handbook sent to your home. Subscribing gives you access to their 2 apps. One to check food and one to find venue.
How can I help?
5 years ago I didn’t know about the disease in any great detail. Now, I could stand up and speak about it quite happily for 30 minutes if I had to.
I’m mum to two teens; one was diagnosed as having coeliac disease in 2018.
It was overwhelming & lonely at the start. I remember my first food shopping trip. I spent just under £100 on very little in the Free From aisle. And she hated most of it. There had to be an easier way. What should you do to help your child when diagnosed with coeliac disease?
An easier way
I found I was sharing information with others. Mum’s asked questions to help their kids diagnosed with the disease. There had to be an easier way. A way to help others easily. I wrote a book to help you. They say everyone has one in them, and nowadays, I’m an expert in an average room for coeliac disease. And now I’ve written two! One to help parents and one to help kids.
If you are feeling overwhelmed, lost and a little confused, then you need my book. It will help you get confident in what you need to know, what to do and how to do it.
The book guides you from the start, so you know you aren’t alone, there’s lots of mums out there just like us. How to sort through your kitchen, how to read labels, what you’re looking for, cross contamination and much more.
All written from the perspective of a parent helping a child. Me, helping you help your child.
Follow me on Instagram or Facebook for more helpful hints and tips, as with this disease, just when you think it is in control, it provides a challenge. My DM’s are always open & it is always me, not a robot!
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.
The beginning of our coeliac journey
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.
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.
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!
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.
Children’s parties; how to survive a party with a coeliac child is a challenge, but totally doable. It’s tricky but with a bit of planning it is absolutely possible.
Parties for children are part of growing up. Fun, noise and goodie bags!
To get dressed up, play party games, having fun, dancing. Eating their body weight in sugar!!
But what if you’ve a coeliac child? How are you going to manage keeping them safe?
You want them included, be involved, have fun but how do you ensure they don’t run the risk of getting glutened?
So how can you manage it?
First, speak to the party host. It’s not an easy conversation to start, you feel you are causing a fuss, being difficult, but it needs to be done. And the earlier the better. People are more likely to be adaptable, make the changes to include your coeliac child if they know early.
Keep it clear and simple. Your child can’t eat gluten. It makes them ill. That you’d be happy to supply their party tea on a separate plate or in a lunch box to keep your child safe. What are they having so that you can arrange to have the same similar foods.
But what if they are at a venue? Does the venue cater for your child? Do they understand about cross contamination?
I had this for one party not long after her diagnosis. It was a roller-skating party. One she really wanted to go to. How would I negotiate it? I chatted to the mum when we got the invite as she had to choose what she’d eat – fish fingers or nuggets & chips. I said I’d have to send her with a packed lunch as I didn’t know if the venue could cater for her. But I knew she wouldn’t like sitting there eating a packed lunch when everyone around her was having nuggets & chips.
Contact the party venue
I got the details from the mum & gave the venue a call. I had a surprise. They knew about the disease. They understood and catered for various allergies. GF nuggets, fish fingers and chips were on the menu. They’d need to cook it in the oven as their fryer was used for other gluten items but would serve hers on a separate platter.
They skated their hearts out for an hour or so and then time for tea. Her little face lit up so bright seeing she was having the same as everyone else. Don’t underestimate the difference it makes. Watching her sit round the table chatting to everyone, whilst munching on her chips was fabulous to watch.
Now obviously they can’t have the cake, something that lots of children look forward to so go prepared. I often made cupcakes & would supply one in advance to come out with her party bag, or for to have when she came home.
My Top Ten Party Survival Tips
State that you’d love for your child to come but that they have a special gluten free diet.
Keep it simple. That they can’t eat gluten that’s in wheat/barley in food/drinks (cheap cola)/some sweets/cakes etc.
That they can’t share due to the risk of contamination – fingers that have been holding a gluten sandwich dipping into the crisps/cucumber sticks etc
Is the party at their home or a venue?
If at a venue – give the venue a call so you speak to them direct.
Ask questions: Do they cater for a gluten free diet.
Do they know about the disease, about cross contamination.
Have they a separate fryer for chips, gf nuggets, fish fingers or can they provide oven cooked ones?
Do their responses make you feel ok about the venue itself?
Is it at the parents home? Ask what is the theme, what are they planning food wise? Is it a typical party spread, pizza or a BBQ? By finding out what they are having, you can plan.
Can you find similar suitably safe gluten free alternatives? Or do they offer to supply them? You’ll need to explain to them about cross contamination. It’s probably easier to send your child to the party with a lunchbag or plate covered in clingfilm & named, to be unwrapped when sat at the table. If your child understands and gets the risks about not eating gluten, that’s great. If not, you may have to stay at the party and watch them like a hawk.
Cake – who doesn’t like a slice of birthday cake. But that’s no longer an option for your coeliac child. So source an alternative. Either shop bought cupcakes or homemade ones – pop in a bag tied with ribbon or a cupcake box/tuppaware & give it to the party host to give out to your child instead. Then they aren’t left out.
Party bags. Now they are a mine field. Most sweet party cones are out, but I’ve had parents make special ones for my child based on the sweets she likes. Ask them to leave the sweets in wrapping for them. Easier for you to trust, and you can read the ingredients if needed! Have a swap box at home too – just in case. Helps avoid disappointment
Always be prepared. Have snacks in your bag, gf biscuits, gf oat bars etc and ALWAYS send them with a named water bottle. Something they know is theirs so they can go back to it when needed. Drinks bottles/cups are always getting muddled up & they always seem to end up all drinking from one cup!!
Need more help?
Need more help? I had to find my way, just like you. I didn’t want other parents to struggle at the beginning. I’m just a regular mum like you who happens to have a coeliac child.
It’s overwhelming & definitely lonely in the beginning. Friends and family try, but don’t often get the lengths we have to go to.
I do as I’ve been there & it will be part of our life forever. It’s second nature now, and it will be for you too. If you need extra info, help and a gentle guide to getting it right from the beginning, here’s a link to my book on Amazon that I’ve written to help get you on the right path – Coeliac Disease & your Child – What every parent needs to know. Find out more here.
Follow me on Facebook or Instagram for more hints and tips on how to manage with your coeliac child. Just when you think you’ve got it all in hand, something comes up to challenge you. An experience shared, is what it’s all about.
It isn’t easy hearing the news that your child has been diagnosed with Coeliac Disease.
It is heart breaking. But at least you now have a diagnosis as to why they’ve been ill.
What do you do now?
The sense of chaos and overwhelm is undeniable when your child is diagnosed with coeliac disease. But, with a little planning and prep, you can get to grips with it and get your child back on track to the best health possible.
Because that’s all that matters right?
It is the only disease that can be cured by diet alone. Isn’t that just amazing.
But where do you start?
I had to start from scratch, there’s lots to learn, but my free Top Ten Tips will help get you started on your journey ticking off all the little things to know and giving you a good starting guide about Coeliac Disease.
There is so much to think about in the beginning whilst you find your feet; from checking labels, finding foods they like, checking store cupboard essentials and learning how to cook in a different way.
My new book is now available on Amazon, Coeliac Disease & your Child – What every parent needs to know. It’s helping parents, especially mums, so that in the early days their not so overwhelmed. That they don’t have to search the Internet or Facebook groups for answers that should be easily available. There’s enough to be doing. Helping your child is the first step.
I was given leaflets. Lots of them, but many irrelevant to my child. Designed for adults. And when you want to go back for some info, you never remember what was in each leaflet. There had to be a better way.
I want to tell you it can all be managed. It takes a little getting used to, remembering to do things differently, but, once you have those processes in place and know what you are looking for and doing, everything will be fine. I promise.
And that is what you want in the first place. To get your child back on their journey to the best of health.
To help lessen your overwhelm, grab a copy today. It will help, I promise.