Coeliac Disease Diagnosis – Where to look for information on going gluten free

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!

Nicky