Coeliac Disease in Children: Top 5 FAQs

Girl with stomach cramps

Coeliac disease in children can be an anxiety raising situation for parents. As parents, we strive to protect, nurture and improve our child’s life. A mother’s intuition is strong. We often just know something is ‘a bit off’, before we have a name or any real insight as to what is wrong.

Finding the answers

Kids can be fickle little things. But when something changes, and we feel it’s just not a niggle, we often end up at the family doctor. When the doctor says ‘coeliac disease’ our initial reaction may be emotional. We fear the worse, while hoping for the best. After the initial shock passes, then the relief of knowing what is ailing our precious child floods in. We take a deep breath. Then we get on with mothering our child. Next we take steps to modify our efforts to minimise the negative effects of coeliac disease.

Coeliac disease in children – questions

A myriad of questions can flood our heads when we first hear our child has coeliac disease. How do we best protect our child from further exposure or additional nutritional damage? What needs to be removed from their diet and what can stay? How do we manage this as our new normal? What about when the child leaves the proactive nest of home and ventures into kindy, school and beyond? And how did we even know in the first place that our child was sensitive to gluten? And is being sensitive to gluten the same thing as coeliac disease?

What is coeliac disease?

First things first, what is coeliac disease? Basically, it’s a genetic autoimmune disorder that becomes a problem when our predisposed child eats food containing gluten. Gluten is a protein found in wheat, barley and rye. Most commonly, we know gluten as the thing that makes bread springy. Gluten gives it the bread-like texture we love and adore.

It’s a problem when a person, young or old, with coeliac disease, eats gluten. The gluten protein damages the part of the small intestine called the villi. These little finger-like villi help with absorbing nutrients from our food. So once damaged, and continually re-damaged by gluten,  we don’t get the same nutritional value from our food.

Common symptoms

So how do you know your child is suffering because of gluten, and not some other childhood aliment? Well, it can be tricky. But a mother’s observations can go a long way to helping inform your healthcare professional.

Some common symptoms of coeliac disease in children are :

  • changes in bowel movements
  • reduced appetite
  • upset tummy and stomach bloating
  • slower than expected growth
  • increased tiredness that can’t be explained
  • mouth ulcers
  • weight loss
  • a child who is out of sorts, or just unwell for a prolonged period of time.
  • sometimes there is trouble getting good quality sleep
  • reduced concentration
  • mood swings, like being tense for no particular reason.
  • if one or both of the child’s parents are coeliac, well that increases the likelihood.
Girl with stomach cramps
painful stomach cramps

Diagnosis of coeliac disease in children

Children are commonly diagnosed when they begin to eat processed foods. So between the ages of six months and two years old. This is because the child is now eating food containing gluten. Now that sounds a tad gloomy, but it doesn’t have to be. Gluten free foods have come a long way in the last 20 years, so being a coeliac child does not mean a lifetime of no birthday cakes, peanut butter sandwiches or spaghetti.

Getting a diagnosis starts with a conversation with your healthcare professional and blood tests that measures certain antibodies. After discussing the child’s symptoms your healthcare professional would order these tests.  Positive antibody tests are only an indication of coeliac disease. Confirmation of the diagnosis by gastroscopy and a small intestinal biopsy is usually part of the process. This is a quick procedure, but does require your child to be under a general anesthetic. Small samples of the intestine are collected and then analysed for damage consistent with coeliac disease.

Gluten intolerance

While searching for answers to your child’s symptoms you may also hear the words gluten sensitivity and gluten intolerance. Symptoms are similar and sometimes the same, so it’s important to involve your healthcare professional. Whatever the outcome, there is a pathway forward for you. A pathway that will relieve your child’s symptoms, stop the damage from continuing, heal the gut and grow your child into a happy, nutritionally complete young person.  The cornerstone to correcting and managing the effects of coeliac disease, gluten sensitivity or gluten intolerance is a nutritious, balanced gluten free diet.

Frequently asked questions about raising a child with coeliac disease

Q: Is coeliac disease life-threatening?

No, not in a life and death manner, like say a peanut allergy may be with anaphylactic shock or an asthma attack could be. But, it should be taken seriously, as if left unaddressed the discomfort and ‘failure to thrive’ risk is real. If not responded to, the child will not be given the best opportunity to have a full and healthy life.

I have a friend who stands at 5”9, his three brothers are over 6”. During his childhood he failed to grow at the same rate as his siblings. Nor in his late teens did he bulk up like his brothers. He wasn’t diagnosed with coeliac disease until his late 30s. He is sure that this robbed him of his six-foot status. Once gluten free, the stomach aches, foggy head and fatigue lifted from him and he has a new sense of vigour and all-round wellness.

Q: How does coeliac disease affect my child’s digestion?

When your child has coeliac disease their immune system mistakes gluten as a threat to their body and launches an attack. This damages the small intestine and disrupting the child’s ability to take in sufficient nutrients from their food.

Q: What happens when my child eats gluten?

Reactions vary, but most commonly a child will feel uncomfortable and bloated. Their next bowel movement may be loose and they might complain of a ‘funny tummy’. In some very severe cases, your child may be ill for a few days. When not managed properly, over the longer term, the condition will cause a child to ‘fail to thrive’ and have an overall negative effect on wellbeing.

Q: What about gluten in shampoo and non-food items?

To be a problem the gluten has to be eaten.

Q: What are the villi? Will they stay damaged?

Villi are tiny, finger-like projections in the small intestines that help your child absorb nutrients. Eating gluten damages the villi. The villi become flattened and then can’t act in the same absorbent manner. Once gluten is removed from the diet, the villi will not be damaged further. In fact the villi are not permanently damaged as your body continuously renew these amazing little absorbent fingers. 

Q: Should my whole family eat gluten free?

Yes, what a great idea. It will be easier for your child to accept the changes if everyone has the same meals. Easier for you too. There are many documented health benefits from being free from gluten. Plus, the product range now means that there are gluten free choices for everything from bread to birthday cakes, from cookies to pasta. A gluten free diet is no longer restricted to rice cakes. Besides, all vegetables, fruit, seeds, meat and dairy, in their unmodified form, are naturally gluten free.

Q: How do I manage ‘special events’, like when my child gets invited to a friend’s birthday party?

A quick call or text to the hosting mother, along with sending a box of safe substitute options for your child, will go a long way to addressing this. Include a  decorated gluten free cupcake, to sub in for the birthday cake. Plus some party food is gluten free. Besides, nowadays food allergies from various sources should be considered by the host, so accommodating a gluten free child should not be a big deal.

So now the initial shock is over, you and your child can be comforted by the very real proposition that living a gluten free life is no big deal. In fact, most of Asia has been predominantly gluten free for centuries. Even in Australia gluten free groceries, gluten free cafes and gluten free take out is commonplace. Pop back soon for more on gluten free diets. Plus a seven day meal plan for your gluten free child. There is also a wealth of information on Coeliac Australia’s website. Plus some great resources at Yum Gluten Free.

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