What you need to know
If you’re here, welcome to the club. It’s quite a small club, but as more testing is done earlier on those that have various issues, well, more join.
Your child might have had symptoms, they might not have had any, it’s a tricky disease to determine, but easily done with a quick blood test.
Once your child has been diagnosed with Coeliac Disease, and the consultant has told you to go gluten free, then you can start making changes to your daily lives, their diet and getting everything sorted.
In the early days, it can be overwhelming and quite lonely. Your friends, whilst being supportive, won’t probably get the changes you have to make. I remember mine understanding the cutting out the wheat, but not understanding we couldn’t just grab a bag of chips from the chippy. But they are gluten free….. Yes, but it’s how they are cooked, if they are cooked with other gluten items….. In the beginning it’s a bit like putting a very tricky jigsaw together.
So what are YOUR first steps?
My first points are this:
- Join Coeliac UK
- Learn what you need to look for
- Learn to read labels well
- Allocate a cupboard /shelf to your GF child
- Check everything in your kitchen / storecupboard/fridge/freezer including stock cubes!
- Grab my book from Amazon to help guide you through easily – don’t struggle
Where to go for help
There are lots of different Facebook groups for adults and a few for parents of coeliac children too – search in groups to see which one fits best with you.
Coeliac UK – they have a website and you can call them with queries too. Very handy when you just want some reassurance.
Your GP/Consultant/dietitian. As it is your child that is diagnosed, you should be allocated a dietitian that sees your child on a regular basis in the first year of diagnosis, and then ideally yearly. Yearly tests include blood work, height and weight measurements. It’s to make sure that they are growing well, catching up if their body has been malnourished. The blood tests are to ensure that their TTG numbers are dropping adequately and heading to the ‘normal’ range.
When my daughter was diagnosed 5 years ago, I didn’t know what was required, what we needed to do, how it was all going to work. The overwhelm was incredible, but, as ever, I had to find the solution to the problem.
I researched, I read, I learnt. Whilst we had good support, I’ve read so often that there are those that don’t. So many of the groups on FB are adult let, making suggestions that don’t appeal to a child. Adult taste buds are different to a child’s. They don’t want to drink peppermint tea if they are glutened. They want to be normal, be like their peers.
From stories that will resonate with you from other mums, to ideas on how to organise your kitchen cupboards, keep items in the fridge and cross contamination, a coeliac’s biggest risk.
It doesn’t have to be hard. There is an easier way.
Grab your copy to make life easier & with less overwhelm. It’ll help, I promise