For any parent of a child with Coeliac Disease, diagnosis brings with it massive change in what your child can eat and how you and they negotiate their way through eating and living safely, whether at home or elsewhere. Finding gluten free food is relatively straight forward nowadays in most countries, but 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, and even a sense guilt and burden.
The early experiences children have and the messages they receive about being Coeliac will have a massive impact on their understanding, ownership, and future management of their condition. How you manage the transition and consolidation to gluten-freedom with your child and the level of positivity (or otherwise) you adopt, will make a huge difference to your child’s acceptance of their condition.
As a family, we embraced the diagnosis of our daughter at age 6 and did everything in our power to help her to see it as a part of herself that was different and special yes, but not in any way a limit to what she could do or achieve. It was a good approach….. We now have a child who (at age 12) exudes confidence in her knowledge of Coeliac Disease and who 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.
As an adult following a gluten free diet, you have control. It is for you to decide what you should and can eat and how to manage your health… but once you have a Coeliac or gluten-intolerant child on board, things can become extra complicated. Our responsibility as parents is to make sure our kids are safe and healthy and for parents of a Coeliac child, that can mean that we feel the need to take control over everything they eat. Don’t even go there… it is simply not possible. The reality is that children grow up really quickly and we have an obligation to help them to live with their condition… for life! That means teaching them how to look after themselves, to be safe, happy, healthy and positive about their diagnosis and to embrace all that it brings… its limitations and benefits. We want them to develop the ability to make informed decisions about what they eat, when to say ‘no thanks’ and how to be sure that the food they eat is safe. It is 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, risk-managing, responsible, food-enjoying people.
This Guide is intended to share the wisdom we have gathered in our family’s Coeliac journey, in the hope that it makes 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. I will share with you our personal experience of the practicalities and emotional complexities that come from living day to day with the condition and (hopefully) dispel some of the myths and fears that surround it.
Although I am writing from the perspective of a mother of a child with Coeliac alone, I am all too aware that there are many children who’s Coeliac comes with other associated autoimmune conditions such as diabetes and autoimmune thyroid disease or who have intolerances and allergies way beyond gluten. I am unable to speak for those parents dealing with life-threatening food-allergic conditions (it must be a massively scary and anxious journey through childhood for sure) and I cannot discuss managing the health tests or drug-response necessary to severe allergic reactions, but there will nonetheless be some similarities of experience in dealing with the day-to-day welfare of any child unable to eat certain foods and I hope that sharing my own perspective, experience and learning may help and reassure others beyond the Coeliac community.
This Guide is not meant to be a diagnostic or medical tool for Coeliac, or intended to discuss the 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 that you seek medical consultation from your GP. If you are unhappy with the response you receive, you should demand attention until all the relevant tests have been done to confirm or not….. and even then, if your child is still 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 for your child as early as you can.
I have written this Practical Guide to explore key areas that you as a parent of a Coeliac Child are likely to face as your child moves from diagnosis, through childhood and out into the big wide world.
Each section in this Guide will be written to stand alone as individual ‘chapters’. As such it is hoped that it can be used as a short ‘book’ to be dipped into and used as you come to face new or unexpected challenges. If there is anything that you feel has not been covered or that you feel can be added to or improved, please contact me via the e-mail link in the sidebar. I am always happy to learn from the experiences of others.
In order to make the Guide as easy to navigate as possible, it will be laid out in pages that can be read on an individual basis and will cross-reference with each other. Each section (as it is published) can be accessed by the drop-down menu, but I have also included a list of sections here which I will cover and which will be linked as they are added.
1. Discovering Your Child Is Coeliac (including Post-Diagnosis Health Checks)
2. Living with Coeliac Disease – Food : Staying Gluten Safe
3. Eating Out – Restaurants and Fast Food
4. Child Care and Education – Managing Your Child’s Dietary and Health Needs
5. Friends – How to Manage Play Dates and Parties
6. Adolescence – A Question of Independence and Trust
7. Travelling Gluten Free
8. List of Resources