When a child is diagnosed with coeliac disease, it is common for parents to experience a range of emotions. These can include fear, overwhelm and powerlessness. Some parents may also experience relief at finally knowing the cause of their child’s symptoms. Even as your child reaches adulthood, or when they are diagnosed as a young adult, it’s normal for parents to continue to worry. When you are not around, will they ask enough questions, remember to pack snacks and err on the side of caution with their decisions around food? This article provides tips on how to support your child to develop resilience and learn how to manage their health and well-being as they transition toward independence.

Create a Safe Home Environment

• Validate Their Feelings: Create a safe environment for them to communicate their feelings about coeliac disease, express their frustrations and ask questions. Ensure they know you are there for them and they can lean on you for support.
• Set Up a Safe Kitchen and Pantry: Make home a place where your child doesn’t need to worry about cross-contamination. Set up separate prep areas, chopping boards, appliances and storage for gluten-free items. Or consider adopting a gluten-free household.

Educate and Advocate

• Equip them with Knowledge: Use reputable resources like the Coeliac New Zealand welcome pack, website and YouTube channel to educate the whole family on the importance of a strict gluten-free diet. Help your child understand how it is necessary for their health and well-being, reducing symptoms and risks of long-term complications. Scheduling regular GP checkups and visits to a dietitian can ensure their health, growth and nutritional needs are being monitored. Gentle reminders and financial support for these appointments can be helpful as they move toward independence and leave home.
• Model Assertive Communication: Role-model how to explain their needs and advocate for themselves calmly and confidently in social situations. They will learn from your example.
• Raise Awareness in Schools and the Community: Educate teachers, parents, local clubs and cafes about coeliac disease. Advocacy empowers parents to actively support their child and improve outcomes for everyone with coeliac disease. Coeliac NZ has a range of helpful resources to assist with this.

Equip Your Child with Practical and Wellbeing Strategies

Practical Strategies:

• Plan Ahead: Carry gluten-free snacks and bring your own meals to events.
• Offer to Host: Offering to host their friends at your home allows you to control the food being served and ensure that it is safe. Likewise, offer to choose the restaurant for group meals out which your child is invited.
• Do Your Research: Before going out, contact the restaurant in advance to ensure coeliac-safe options. Communicate your child’s needs again to the staff upon arrival and check again when food is served.

Wellbeing Strategies:

Equip your child with strategies to help them manage their stress, develop resilience and learn how to advocate for themselves.

• Stress-Reducing Techniques: Deep breathing exercises can help your child learn to calm themselves when stressed.

• Focus on What You Can Control: Encourage them to direct their energy toward what’s within their control and try to let go of the rest.
• Prepare Responses for Social Situations: Help your child develop a few responses to questions or dismissive comments about coeliac disease. These can use humour to diffuse tension, kindly correct misunderstandings and redirect the conversation. Having responses ready reduces the pressure on your child to think of what to say on the spot.
• Encourage Self-Compassion and Self-Care: Remind them that it’s okay to make mistakes and to focus instead on what they can learn from them. Encourage daily self-care practices that help to recharge their batteries.
• Foster Positive Relationships: Ensure your child has supportive friends and role models and knows where to go for extra support if they need it (like school counsellors, health professionals and helplines).
• Practice Gratitude: Help your child focus on small wins and what is going well. This can shift the focus away from the common tendency to focus on what’s wrong and foster greater resilience.

Don’t Forget to Take Care of Yourself

As a parent, your ability to support your child begins with caring for your needs. Make sure that you utilise strategies to reduce stress, recharge your batteries daily and have someone you can talk to. Coeliac New Zealand volunteers and other members are valuable resources, offering advice and understanding as you navigate this journey. Taking care of yourself benefits you and provides your child with a model of self-compassion and self-care. It’s common for parents to continue to worry about their child’s health and well-being even after they leave home. Go easy on yourself. They may make mistakes along the way but these can provide important learning opportunities. While we can’t control what they do when we are not there, we can trust that they have the tools and support they need to live their lives to the fullest.

For further insights, check out the Coeliac NZ YouTube video Managing Transitions, where CNZ Board Member, Rosie Jerram, shares her experience and tips on transitioning as a young person with coeliac disease from home to university halls to flatting. Watch here.

The article was provided by the Coeliac New Zealand Health Promotion Manager Karina Ledwos