Navigating the Journey: A Guide for Parents with a Newly Diagnosed Coeliac Child - Jessica Milliner, Coeliac & Gut Health Dietitian

Receiving a diagnosis of coeliac disease for your child can be an emotional and overwhelming experience. Suddenly, you find yourself faced with a new set of challenges, from understanding the emotional impact to restructuring your child's diet. As a dietitian specialising in coeliac disease, I am here to guide you through this journey, offering insights into the initial emotions, building a support team, the process of learning together, and tackling the biggest challenges that lie ahead.

Initial Emotions: From Shock to Empowerment

The first reaction to a coeliac diagnosis often involves a range of emotions, from shock, disbelief or even relief, to worry and confusion. It's important to acknowledge these feelings and give yourself and your child me to process the news. Understand that it's okay to feel overwhelmed, and seek support from friends, family, or a mental health professional if needed.

However, it's equally important to shift the focus from the challenges to the empowerment that comes with knowledge. With the right information and support, managing coeliac disease becomes a routine part of daily life. Take small steps, celebrate the victories, and remember that you are not alone in this journey.

Building Your Support Team

One of the first steps after a coeliac diagnosis is to assemble a strong support team. This includes not only healthcare professionals but also Coeliac Australia, friends, family, and your child's school. Reach out to a paediatric gastroenterologist, an Accredited Practising Dietitian (APD) with expertise in coeliac disease, and a psychologist if emotional support is needed.

Educate those close to your child about coeliac disease, its dietary implications, and the importance of strict adherence to a gluten-free diet. This support network is crucial in ensuring your child feels understood and supported in various aspects of their life.

Learning Together: Embracing the Gluten Free Lifestyle

Learning about coeliac disease and the gluten-free lifestyle is a journey that involves the entire family. Here are key steps to consider:

1.      Understanding gluten

Educate yourself about what gluten is, where it's found, and how to identify it on food labels. Become familiar with naturally gluten-free foods and safe alternatives.

2.      Educate your immediate family

Organise a me to educate other family members (adults and older siblings) about what you have learnt either through your own research or through working with a health professional such as a coeliac dietitian. It’s so important to get the entire family onboard with your child’s new dietary requirements - and by that, I DON’T mean that the entire family needs to go gluten free!

Connecting with others on a similar journey via online support groups is also a great way to learn from their experiences. You may find practical tips and emotional support here that you may find helpful to implement in your own household.

3.      Involving your child

Involve your child in the learning process. Teach them age-appropriate information about coeliac disease and why a gluten-free diet is necessary. This helps them develop a sense of responsibility for their health and increased likelihood of complying to the gluten free diet.

4.      Reading food labels

Make reading food labels a fun and educational activity. Teach your child to recognise gluten-containing ingredients and look for gluten-free certifications. This helps build their confidence and promotes greater independence with making safe food choices as they grow up.

5.      Gluten free cooking and baking

Explore gluten-free cooking and baking together as a family. Experiment with new recipes and involve your child in meal preparation to make the gluten-free lifestyle a positive experience.

This is particularly useful for children who may not like to taste new foods, either due to the child’s genuine fear that a new food may cause them symptoms, the texture is different (yes gluten free food generally has a different texture – you should try it for yourself if you haven’t already!), they believe they won’t like it or they may just be a fussy eater. Exposing your child to new foods via the other senses of sight, touch and smell may be a positive first step to gradually tasting the food.

Remember, many exposures are necessary before acceptance of a new food. Together, work towards pairing small amounts of the ‘new food’ with a commonly accepted food in a supportive eating environment where you as a parent may be role modelling the behaviour as well.

Tackling Challenges: Insights from a Coeliac Dietitian

While the gluten-free lifestyle is manageable, it does present certain challenges. Here are some insights on dealing with them:

1.      Social Challenges

Help your child navigate social situations by educating friends, teachers, and parents about coeliac disease. Provide safe gluten-free snacks for playdates and school events.

2.      Dining Out

Call ahead when dining out. Choose restaurants with gluten-free options and call ahead to discuss your child's coeliac safety needs. Equip your child with the confidence to communicate their dietary requirements.

3.      School Lunches

Work with your child's school to create a safe and inclusive environment. Provide the school with a list of safe snacks and lunch options to ensure your child doesn’t feel like they are missing out on special occasions (i.e., birthdays) and ensure open communication with teachers and canteen staff.

4.      Cross Contamination

There is no need to make your entire kitchen a gluten free zone or make the whole family eat gluten free just because one family member needs to follow a strict gluten free diet BUT implementing strategies that work for YOUR household to reduce the risk of accidental gluten cross-contamination can make living gluten free easier at home. Examples of this include teaching your child to choose products from the pantry or fridge that are labelled gluten free or are on a dedicated ‘gluten free shelf’. What works best for your family here? Remember to teach them to always use clean utensils and cooking equipment.

5.      Nutrient Intake

Collaborate closely with an Accredited Practising Dietitian (APD) to ensure your child receives adequate nutrients. An APD who specialises in coeliac disease can help you plan a well-balanced gluten-free diet and recommend appropriate supplements if necessary.

6.      Growth Monitoring

Regularly monitor your child's growth and development. If there are concerns about nutrient absorption or growth, consult with your healthcare team, including a paediatric gastroenterologist and a dietitian.

7.      Emotional Wellbeing

Pay attention on to your child's emotional well-being. Encourage open communication, and address any concerns or fears they may have. A psychologist can provide additional support if needed.

Having a child with coeliac disease is undoubtedly a journey filled with challenges, but with the right support and knowledge, it can also be a journey of empowerment and growth. As a dietitian, my goal is to help you navigate this path with confidence and equip your child with the tools they need for a healthy and fulfilling life. Remember, you are not alone, and together, we can build a foundation for a thriving future for your child with coeliac disease.

Written by Jessica Milliner, Coeliac & Gut Health Dietitian

Visit Jessica’s website here; www.jessicamilliner.com or connect with her on her socials; Instagram @coeliac.dietitian.jess