Having a child diagnosed with Coeliac Disease can turn your life upside down and gluten free kids need extra care. But you are not alone. This Practical Guide to Parenting a Coeliac Child brings together the experience of many to support you on your journey…
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Gluten Free Kids – Coeliac or Celiac?
Gluten free kids most frequently come with a diagnosis of Coeliac Disease. Or is that Celiac disease? It can get a little confusing. But the two are in fact, one and the same. It is just a matter of geographical spelling!
For those of you living in North America and Canada, your gluten free kids will be Celiac. In the UK and Australia, they are Coeliac.
Ultimately, spelling is irrelevant. Coeliac/Celiac Children the world over have the same health needs, care needs and necessary gluten free diet. And whilst this Guide is written from within the UK, it will answer many of the same questions you have wherever you are in the world.
You will find however, that most countries have at least one national organisation that supports the Coeliac community, both for advice and research. In the UK we have Coeliac UK. For Australia it’s Coeliac Australia. In Canada you have the Canadian Celiac Association. And in America there’s the National Celiac Association and the Celiac Disease Foundation.
There are also many many other organisations. So, wherever you live, seek them out. Use Google. Ask your health networks. They are there for you… and they do an incredible job.
Gluten Free Kids – Coming To Terms with a New Life
For any parent of a Coeliac child, diagnosis brings with it massive change. The biggest question is often “what can my child eat?”. But this is inevitably accompanied by wider worries about the damage on health if you get it ‘wrong’. And about the impact having a gluten free child will have on family life. Or how it will affect their friendships and education.
Nowadays, finding gluten free food is relatively straight forward in most countries. However, the risks that come from cross-contamination, as well as safely managing your child’s foodie social life at parties, nursery, school, sleepovers, school trips and even visits to relatives can cause considerable worry.
Initial Response – Coeliac Children Look to their Parents for Reassurance
The responses Coeliac children get from those around them after diagnosis matters. The reactions of others will have a massive impact on their understanding, ownership, and future management of the condition. How you help them manage diagnosis and the transition to being gluten free is therefore important. Children look to their parents for reassurance. The more positive and supportive you can be, the better. If you can accept it as ‘not the end of the world’, they will too.
As a family, we embraced the diagnosis of our daughter at age 6. We did everything in our power to help her see it optimistically. Coeliac was a part of her that was different, but not a limitation to what she could do.
It was a good approach….. We now have a teenager who exudes confidence in her knowledge of Coeliac Disease. She not only knows how to competently manage her diet, but is also a vocal advocate for others and a teacher to those who need to know. She is my inspiration and I am so proud of her. I have no qualms about sending her out into the big wide world, knowing she understands.
Gluten Free Kids and the Importance of Developing Confidence
If you are an adult following a gluten free diet, you have control. You decide what you should and can eat and how to manage your health… But having responsibility for a Coeliac or gluten-intolerant child, can be extra complicated. As parents, we all want to make sure our kids are safe and healthy. For parents of gluten free kids, that means we sometimes want to take control over everything they eat… only to quickly find that this is not possible.
Of course we have a responsibility to keep them well and to help them live with Coeliac Disease. But children grow up really fast. We wouldn’t be doing them any favours if we didn’t let them develop their independence. For Coeliac children, that includes helping them to develop the confidence to look after themselves… To be safe, happy, healthy and positive about their diagnosis and to embrace all that being gluten free brings… its limitations and benefits.
Gluten free kids need to learn how to make informed decisions about what they eat… About when to say ‘no thanks’ and how to be sure that the food they eat is safe. It’s our job to give them the confidence to get on with being kids without worrying about their health. And to help them to grow through the teenage years and into adulthood, as independent, food-enjoying people.
Why did I Write This Guide to Parenting a Coeliac Child?
As the parent of a Coeliac child (with over ten years experience), this Guide is written from personal experience and reflection. It aims to share the wisdom gathered in our Coeliac journey. We hope doing so will make things a little bit easier and less anxious for other parents facing the same dilemmas and decisions as they move from diagnosis to a new normality.
Although written from personal experience, I also know from discussion groups that our story is a familiar one. Our experiences are replicated by many other parents, gluten free children and families who live with Coeliac Disease… This is the guide I wish I had had at diagnosis.
I am also writing however, from the perspective of a mother of a child with a single Coeliac diagnosis. But I am very aware that there are many children who’s Coeliac comes with other associated autoimmune conditions. Diabetes and autoimmune thyroid disease are all too common pairings, as are intolerances and allergies way beyond gluten.
I am unable to speak for those parents dealing with incredibly frightening life-threatening food-allergies. But I know there may be some similarities of experience in dealing with the welfare of any child unable to eat certain foods.
What this Guide is Not…
This Guide is not meant to be a diagnostic or medical tool for Coeliac. It does not aim to discuss the detailed medical process of diagnosis. That is for the medical professionals to consider on a child by child basis… and there is ample advice out there from experts such as Coeliac UK to guide you.
If you are concerned that your child may have Coeliac Disease or any other allergy or intolerance, it is essential you seek advice from your GP. If unhappy with the response you receive, continue to demand attention until all relevant tests have been done. Even then, if your child remains unwell, keep pushing until you find out why. There are many conditions with similar symptoms and it is essential that you pin down what is happening as early as you can.
BUT… DO NOT REMOVE GLUTEN FROM YOUR CHILD’S DIET UNTIL THEY HAVE BEEN TESTED AND/OR DIAGNOSED WITH COELIAC DISEASE. Removal of gluten may cause a false negative result leading to non-diagnosis.
How to Use This Coeliac Parenting Guide
Each section in this Guide has been written to stand alone as individual ‘chapters’. As such, I hope it can be used as a short ‘book’ to be dipped into as you come across new or unexpected challenges.
Some challenges faced by gluten free kids are (of course) very similar to those faced by gluten free adults. For these areas of discussion, you will be directed to other broader posts which are relevant to all age groups. The gluten free diet, food safety, label-reading, eating out, etc. are some such areas.
If there is anything you feel has not been covered, or that might be added or improved, please contact me via the contact form or by leaving a comment below. I am always happy to learn from the experiences of others.
In order to make the Guide as easy to navigate as possible, it is laid out in chapters. These can be read on an individual basis or in one ‘hit’. Each section can be accessed by the drop-down menu ‘Coeliac Parenting Guide’ in the menu bar. I have however, also included links to other sections here :
- Discovering Your Child Is Coeliac (including Post-Diagnosis Health Checks)
- Living with Coeliac Disease – Food : A Guide to Safe Eating & Cross Contamination
- Eating Out – Restaurants and Fast Food
- Coeliac Children + School – Managing Childcare and Education for your Gluten Free Child
- Coeliac Children + Friends – Staying Gluten Free at Playdates and Parties
- The Teenage Years – Navigating Adolescence and Secondary School
- The Gluten Free Student – How to Survive Being Coeliac at University
- Travelling Gluten Free