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.
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.
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!