Coeliac disease in children – why there is more to “treatment” than removing gluten from diet.

by | Body Image, Children, Gut Health

**The focus of this piece is on coeliac disease, there are similarities, but also differences, between managing various health conditions requiring food restrictions, please keep that in mind when reading**

I am a dietitian and a mum of three girls. My nine-year old twins have coeliac disease, for which they require a strict gluten free diet to help manage symptoms and health outcomes.

For many, there is no choice but to restrict certain foods from a child’s diet. My experience is that our health and medical profession have done (and continue to do) a good job in caring for the physical health of my children.   However, and also in my experience as both a parent and dietitian, I feel that we are missing a piece of the puzzle when treating conditions like coeliac disease in children. Emotional well-being is often left out of the equation. The intention of this article is not to induce fear, but an attempt to raise awareness and  a call for us (health professionals) to engage in these conversations with families to provide ALL the information we need to care for both the physical and emotional well-being of our child(ren).

Coeliac disease is an autoimmune disease that can have serious health consequences, it comes with a long and varied list of symptoms that may affect quality of life, result in nutrient deficiencies, higher risk of poor bone health and other autoimmune diseases including type 1 diabetes, thyroid conditions, and some cancers. At present, the only treatment for coeliac disease is following a strict gluten free diet FOR LIFE.  There are no medications or pharmaceutical drugs to effectively manage this disease.

Let’s take a look at another health condition that can also have serious health consequences……Eating disorders.

Eating disorders are a serious threat to our physical and emotional well-being and in fact have the highest mortality rate of all mental health disorders. The origins of eating disorders or disordered eating are varied and complex. But let’s explore for a moment, just some of the risk factors and how they relate to managing coeliac disease, allergies and intolerances in children.


Much like coeliac disease we know that genetics can play a role in the development of eating disorders and can co-exist with other genetic health conditions including allergies, coeliac disease, type 1 diabetes and other autoimmune diseases as well as mental health disorders e.g. anxiety disorders. Like many health conditions, being genetically predisposed does not guarantee you will develop an eating disorder but it does make someone at higher risk especially when exposed to other biological and environmental factors.

Trauma & Stress

Traumatic and stressful events can trigger disordered eating thoughts and behaviours. Having being diagnosed myself with a chronic health condition and our twins with coeliac disease, it’s fair to say facing a diagnosis of a life long condition is very stressful.

It is a common and very human reaction when we learn we don’t have full control over our health (or our children’s health) to become focused on the areas of our health we think we can control, e.g. our body size or the food we eat.

While engaging in health promoting behaviours to help manage conditions is a reasonable thing to do, hyper-focusing on food and weight can lead to disordered eating and taking us further away from our original goal of improved health.  Research shows that food restriction puts you at higher risk of disordered eating thoughts and behaviours. The tricky part being that when you are diagnosed with coeliac disease, you have no choice but to be hyper-focused on food and feeding practices if managing your disease is a priority for you. Your physical health relies on it.

Another consideration is food insecurity. While quite different to the level of anxiety stemmed from not knowing when you can next provide a meal for yourself and your family, managing a health condition with food restriction does contribute to a certain level of food insecurity. There is stress of not knowing if there will be food or enough food to eat at a school or family event, on a school camp, a friend’s birthday. While some children may externalise their anxiety, many may internalise their feelings of stress around food. We need to consider the daily compounded stress and impact on our children from this type of food anxiety. While parents of coeliac children work extremely HARD to avoid situations like this for them (exhausting right?), we just can’t control every situation.

Social aspects

As a child grows, particularly towards adolescence they will naturally seek more independence when it comes to feeding themselves – usually wanting to eat out more with their friends.  Adolescence and older children also tend to avoid standing out as being different. This can lead to those with food restrictions choosing to rather not eat than draw attention to themselves by trying to find something that fits within their food constraints.  Compounding those factors along with a period in their life when peer pressure, body dissatisfaction and dieting are rife, is it any wonder we are seeing an increase in food anxiety and eating disorder thoughts and behaviours in this age group.

For me, a dietitian but mostly a mum, the distress of my children’s diagnosis 4 years ago came down to that the fact that the management of one serious disease (coeliac disease) puts my children at risk of another serious disease (an eating disorder).  

WHY ARE WE NOT TALKING ABOUT THIS MORE? As an eating disorder and family feeding dietitian it’s my mission to ensure these conversations are being had with families.

So as parents, what can we do?

1. Impose the least amount of food restrictions as possible on your child. It is tempting as a parent to want to fix our child’s health. Conflicting and often well-meaning advice can leave us trying to remove further food groups. If you suspect there are other intolerances (which does happen) I recommend seeking advice from a NZ Registered Dietitian before restricting your child’s diet further. If looking to improve nutrition, think about what you can add in rather than take away. I recommend to all parents (including those with coeliac disease, allergies and intolerances) to follow Ellyn Satter’s Division of Responsibility when feeding children.

2. Have compassion for yourself and your child in this health journey. Parents and caregivers are their number one support and heavily responsible with how their health is managed but we do need to teach children to manage their own condition for their life-time and that does mean accepting they will make mistakes along the way – much like acquiring many other skills. You will also make mistakes. I’ve made mistakes, mostly due to the highly stressful situations clouding my judgement and thoughts. If your child has an anaphylactic allergy on top this adds another level of stress to the situation but I still recommend compassion for yourself and child while doing your best to follow the advice of your allergy specialist in managing their allergy.


3. Your child is going to have autonomy over their health and food choices as they grow, reframing the disease management from restriction to self-care can help them learn to manage it with increasing independence. Every human being has different needs in terms of looking after their health and well-being. For children diagnosed with coeliac disease, threading through the dietary management as part of looking after themselves and their body can help them to WANT to manage their health and take care of themselves rather than something we say they just HAVE to do. Of course, it is important that they understand the serious consequences of not managing coeliac disease but I have seen instances when scare tactics have led to the naturally and understandable rebellious actions of not following a gluten free diet.


4. If your child experiences food anxiety that impacts their daily life– please get your child extra support. Your GP will be able to refer you to a counsellor, psychotherapist, psychologist, or dietitian experienced in this area (check out our FAQ section for our recommended practitioners). Look at other risk factors for disordered eating that you can influence  e.g. creating a body positive environment, less exposure to dieting, coping mechanisms for anxiety disorders, avoidance or careful management of participation in aesthetic or appearance-based sports e.g. gymnastics. There are some children who will go on to develop eating disorders regardless of managing other risk factors, please know that is not your fault but early intervention is key.

5. Seek support for yourself. You may experience a certain level of anxiety and feel the need to be hyper-focused on food and food labels, however try not to transfer your anxiety on to your child. Having support and your own coping mechanisms can definitely help with that. Whether it is through a health professional, friend or support group that understands your stress. It is well worth seeking that support for yourself.

6. Gain further awareness of the side effects of food restriction. The health and medical profession is letting us down on this one. You should be made aware of the side effects of a pharmaceutical drug prescribed to your child. Why are we not being made aware of the side effects of food restriction to manage health conditions? Unfortunately, we aren’t given many choices on managing this condition for our children but at the very least if we are made aware of the possible side effects, we are able to watch carefully and be proactive to care for our children’s physical AND emotional well-being. I know as a parent, that is all that we can hope for.


Sarah Peck NZRD, clinical lead dietitian here at Body Balance Nutrition & Dietetics supports eating disorder recovery. Sarah specialises in eating disorder rehab and prevention, with a special interest in chronic health conditions and the impact on feeding and embodiment. 

As a non-diet approach Dietitian Sarah can support you to find food flexibility and to regain trust in your body through intuitive, mindful eating practices and self-compassion.

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