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Coeliac Disease

Coeliac Disease in Children

Coeliac (pronounced See-lee-ack) disease is an autoimmune condition that can occur in both adults and children.

Coeliac disease in children is when a young person under the age of eighteen has a food intolerance to gluten. In general, gluten is a starch protein found in grains such as barley, rye, and wheat, but it can sometimes be hard to trace as an ingredient in some food products.

What to do if I suspect my child has coeliac disease?

When a child has coeliac disease, it means the intestines, and therefore the body, cannot absorb nutrients. When that happens, the child can become malnourished without the child, the parent or guardian being responsible.

As research and treatments are ongoing for coeliac disease, doctors and paediatric specialists are still not certain why a child’s immune system reacts to gluten in such a negative way. 

What happens if my child has been diagnosed with coeliac disease?

If you suspect your child has coeliac disease or if they have been diagnosed with coeliac disease, rest assured that there are ways to manage your child’s symptoms so there is no chance of malnourishment happening. There are long-term preventative methods of protecting the intestines from being damaged.

What symptoms should I look out for if I think my child has coeliac disease? What are the signs my child might have coeliac disease?

Coeliac disease is also called coeliac sprue (a disease characterised by fatty diarrhoea leading to malabsorption of nutrients occurring in the tropics), non-tropical sprue, and gluten-sensitive enteropathy (swelling and irritation of the small intestine).

Coeliac disease can cause a long list of symptoms that can differ according to the child’s age.  

Infants - minimal or zero weight gain at this crucial juncture in a child’s life; minimal gains in the infant’s height / length; failure to thrive.

Children and teens experience these symptoms:

  • Diarrhoea / fatty diarrhoea, or alternately constipation

  • Constipation - dry, hard, and difficult to pass stools

  • Stools that are pale and smell foul - any anomalies in the poop department can be an indication of coeliac disease.

  • Bloating and pain in the belly / stomach

  • Gradual or dramatic weight loss

  • Feeling tired all the time, listless, sleep deprived

  • Headaches

  • Skin rash around the knees and elbows or in general

Some child patients don’t have any symptoms at all. The listed symptoms, however, can happen at any time in the child’s life, from being a toddler and up to eighteen years old.

Some children experience problems the very first time they consume gluten (that is why most doctors recommend introducing an infant to rice- and corn-based starches first). Other kids might get sudden onset coeliac disease after many years of being able to tolerate it.

An infant might show signs of coeliac disease the first time they taste cereal. It will manifest with symptoms such as diarrhoea, tummy pains, and weight plateauing.

Over time, your child might not hit their growth goals with height and weight, they might develop mouth ulcers and anaemia or suffer from behavioural issues.

What are the causes of coeliac disease?

Gluten triggers your child’s immune system which damages the villi (pronounced vill-eye). Villi are miniscule finger-like protrusions that line the narrower, small intestine. The job of the small intestine is to absorb all the vitamins and minerals from the now liquified food. Only in the small intestine can the nutrition from the food be passed into the bloodstream where it can heal and power the body.

Coeliac disease damages the small intestine’s villi, which means the child is not able to absorb the essential vitamins and minerals they need to thrive and grow.

We don’t know yet what causes coeliac disease. Coeliac tends to be passed from one generation to the next, so it might be necessary to get a family health history from relatives to help a diagnosis being made. 

Approximately 1 in every 70 New Zealanders could be potential coeliac disease sufferers, but only a fraction of that number are diagnosed. It is more common in people who come from Europe, but all of these indicators together might not mean a Coeliac diagnosis.

Coeliac disease can occur in tandem with other diseases, such as Williams syndrome, Type 1 Diabetes, autoimmune thyroid conditions, and Down syndrome.

How will my doctor diagnose Coeliac disease?

A paediatric specialist will order blood tests for your child. At the laboratory, blood technicians will look under a microscope to check for gluten antibodies in the bloodstream. Other types of proteins might be present in the small intestine lining. These antibodies are proteins which will be found in the immune system because they have been activated by what they perceive as a threat to the body’s health. A heightened immune system is there to get rid of germs, but might detect other things too.

Antibodies stay in the body if it senses a need to fight a problem. If the blood test results show high levels of gluten antibodies, your paediatric specialist might want to do a biopsy of your child’s small intestine to confirm a coeliac disease diagnosis.

Why has the doctor ordered a small intestine biopsy for my child?

If your child’s blood tests come back with indications of high levels of gluten antibodies, the doctor will recommend doing a biopsy of the child's small intestine to confirm coeliac disease.

During the biopsy, done under general anaesthetic for small children and heavy sedation for older children, a surgeon puts a long, narrow tube down the mouth, past the stomach, and into the small intestine. 

The tube has pincers on the end and this is used to pinch a tiny tissue sample out of the small intestine. There is no bruising or bleeding, because the tissue sample is too small and the procedure is minimally invasive.

After the biopsy (called an endoscopy because the thin tube is an endoscope), your child will be diagnosed with coeliac disease. It is recommended that the rest of the family is tested for coeliac disease if one person has it, as the disease runs in families and can be difficult to diagnose in adults.

How is Coeliac Disease In Children treated?

There is no known cure for coeliac disease, but new treatments are being researched all the time. The best way to treat the disease is by keeping your child on a gluten-free diet. Only then will your child’s intestine have the chance to heal. Gluten-free diets also help keep your child free of symptoms.

Which foods can my child eat and which ones should they avoid with coeliac disease?

No barley, rye, or wheat or related grains. Check ingredients if you can, although not all manufacturers have to provide a list. Remember, a product claiming to be wheat-free is not necessarily gluten-free. 

As soon as they are old enough, teach your child to read the ingredient list on food products for themselves. Most foods in shops list the top 8 food allergens on the labels, but imported foods often do not.

Here is a list of foods your young child can eat after being diagnosed:

  • Corn

  • Rice

  • Buckwheat

  • Chickpeas

  • Quinoa (pronounced ‘Keen-wah’)

  • Sorghum

  • Edamame

  • Tapioca

  • Sago

  • Potatoes (be careful because many spiced salt shakes contain gluten)

  • Legumes

  • Meat, eggs, and dairy

  • Oils

  • Vegetables

  • Fruit

  • Sugar

Why you should watch out for spiced salt shakes is because of something called cross contamination. 

Cross-contamination is when gluten sneaks into food without the consumer being aware of it. Eating sprinkles, seasoning, edible decorations, takeout and restaurant foods, and sweets are some of the ways cross-contamination can occur. 

Don’t let fear of gluten ruin your child’s joy in life. If they are exposed to a tiny amount of gluten, it might cause a very mild inflammation, but will not lead to a complete collapse of health. The most important thing is that the family supports the child’s dietary uniqueness and everyone keeps an eye out for hidden gluten in the long term. 

Always reassure your child that their dietary requirements make them special, and that it is something to be accommodated one day at a time, not a life sentence of food restrictions.

It will not be long before the whole family looks forward to a delicious meal of chicken breast crumbed with corn flakes instead of wheat flour.

Coeliac self-assessment

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