Our Story
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.
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!
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.
Lots of love
Nicky
