Getting Diagnosed & the Next Steps
You’ve got your child through the blood tests & now the results are in. But what do you do next?
You’ve had the call from the GP to say they have results & for you to book an appointment.
You’ve a further 2 week wait.
Finally, you find out the results. Your child is positive for Coeliac Disease, and you’ve to be referred to a consultant.
Don’t give up gluten yet!
You’ll need to see the consultant and for them to run their tests first. Please, don’t give up gluten. They’ll want to run a second blood test to confirm the initial diagnosis, and potentially an endoscopy. This is a procedure where they put a camera down the child’s throat whilst under general anaesthetic to look at their intestines to see if there is damage, and how much.
Once the consultant has completed their tests & they say to cut out gluten, you can begin your gluten free journey.
Getting diagnosed & the next steps – how & what to do?
You’ll be given leaflets by the consultant if your lucky. Read them.
You’ll be referred to a dietitian to help with your child’s diet. You should have regular checks in the first year. I think ours was 3, 6 & 12 months.
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.
Getting diagnosed & the next steps – how can I help?
5 years ago I didn’t know about the disease in any great detail.
Now, I can 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 still so very overwhelming & quite frankly a little lonely. I remember my first food shopping trip. A hundred pounds on very little in the Free From aisle. There had to be an easier way. So what do you do once diagnosed & the next steps?
I found a way to make it easier for you. And as of December 2022, it’s even easier. I wrote a book to help you. Yes, a book. They say everyone has one in them, and nowadays, I’m an expert in an average room for Coeliac Disease.
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.
I found everything focused on adults. Not alternatives for children.
Where would you even start.
It’s confusing in the beginning as there’s much to take in. Things to sort, and to make changes. Changes for you as a parent, the child and the wider family. Getting everyone on board and to understand is key. Just one crumb could cause problems.
The book helps guide 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 and much more.
All written from the perspective of a parent helping a child. Me, helping you.
For further information on Gluten Free Little Cook click here.
Lots of love