Coeliac Disease

Key points about coeliac disease

The only treatment for coeliac disease is for your child to follow a strict gluten-free diet.

• coeliac disease is an autoimmune disease
• it is caused by an abnormal reaction by your child's immune (infection-fighting) system to gluten
• gluten is a protein in wheat, barley, rye and sometimes oats
• talk to your family doctor if you think your child has coeliac disease
• your child may need a blood test and biopsy to see if they have coeliac disease
• a strict gluten-free diet is the only treatment for coeliac disease

What is coeliac disease?

An autoimmune disease

Coeliac (sometimes spelled celiac) disease is an autoimmune disease. It is caused by an abnormal reaction by your child's immune (infection-fighting) system to gluten. Gluten is a protein in wheat, barley, rye and sometimes oats. Your child's immune system mistakes gluten as a threat to the body. In an attempt to protect the body from the threat, the immune system creates special gluten-fighting antibodies to fight it.

If your child has coeliac disease, these gluten-fighting antibodies damage the lining of the small bowel.

Damage to the small bowel

Your child's small bowel is lined with tiny finger-like projections, called villi. Villi break down and absorb nutrients in food. In coeliac disease, gluten damages the villi so they become flat and the surface area of the bowel decreases. This interferes with the absorption of nutrients from food. This means your child may not absorb enough vitamins (such as folic acid) and minerals (such as iron and calcium).

Take a look at the video by Coeliac New Zealand for more information on coeliac disease in children.

Video transcript. Can't see this video on YouTube? Try viewing it on Vimeo.

How common is coeliac disease?

About 1 in 70 New Zealanders may have coeliac disease - many of them are unaware they have the condition. It is more common in people of European descent but can affect anybody. It can affect children of any age after they start eating foods containing gluten.

Close relatives of someone with coeliac disease have an increased risk of developing the disease. Coeliac disease can also develop in children with other autoimmune conditions such as type 1 diabetes and thyroid disease. It is also more common in children with chromosomal conditions such as Down syndrome.

You could try the Coeliac NZ online self-assessment survey to find out if your child may be at risk of coeliac disease. Remember not to act on the assessment results alone - talk to your doctor.

What are the symptoms of coeliac disease?

Some children have no symptoms. Some children with coeliac disease may have some of the following symptoms:

• large, bulky, smelly poo
• diarrhoea
• constipation
• farting
• poor weight gain
• poor growth
• weight loss in older children
• low iron or anaemia
• problems with tooth enamel
• uncomfortable and swollen abdomen
• nausea and vomiting
• tiredness
• irritability

How do doctors diagnose coeliac disease?

If you think your child has coeliac disease, talk to your family doctor. Tell your doctor if a relative has coeliac disease.

Your child may need a test for coeliac disease. Diagnosing coeliac disease accurately is important because coeliac disease is a life-long condition.

Blood test

Your doctor may arrange a blood test.

A blood test called coeliac serology

Coeliac serology measures gluten-fighting antibodies in the blood to see if your child has coeliac disease. These antibodies are often higher in people with untreated coeliac disease. Your child must be eating gluten for 4 to 6 weeks before the test.

Your doctor may also check for some vitamin and mineral levels in your child's blood, particularly iron.

If coeliac serology is positive, your doctor will arrange for your child to have further tests. These can include:

• another blood test
• a biopsy at the hospital

Some children may be able to get a coeliac diagnosis without a biopsy. Your family doctor or paediatrician will talk with you about this.

A blood test called HLA gene testing

Not all children need HLA testing. It can be useful if there is uncertainty about your child's diagnosis. The gene test alone cannot diagnose coeliac disease.

Endoscopy and biopsy

Your child may need a biopsy.

To have a biopsy, your child needs an endoscopy. This is sometimes called gastroscopy. This is a simple day procedure. Your child will need an anaesthetic. The doctor will use a flexible tube with a camera attached to its end (endoscope). The doctor will feed the tube through your child's mouth into their stomach and then the small bowel. The doctor will take several tiny samples (biopsies) of your child's small bowel.

Laboratory staff will then examine the biopsies under a microscope to confirm whether your child has coeliac disease. It can take a week or two to get the results.

What is the treatment for coeliac disease?

The only treatment for coeliac disease is for your child to follow a strict gluten-free diet. This allows the villi in the bowel to regrow. After removing all gluten from their diet, your child will return to normal health over a few months.

If your child has had low levels of iron or other vitamins or minerals, they may need to take a supplement until their gut heals.

What does eating gluten-free involve?

A gluten-free diet means removing foods that contain gluten including wheat, barley, oats and rye from your child's diet.

Your child with coeliac disease needs to be on a gluten-free diet for life. Your child's diet needs to exclude all sources of gluten. Eating small amounts of gluten can cause further damage to your child's gut and affect their growth even though it may not lead to symptoms.

It is important to meet with a dietitian to learn and get the right advice about a gluten-free diet.

You will need to replace many common foods with gluten-free alternatives.

These include:

• breads
• biscuits
• cereals
• pasta

You will also need to learn to identify hidden sources of gluten, particularly in commercially packaged food.

Some people with coeliac disease may be able to eat oats again once their blood tests have returned to normal, as not all oats contain gluten. Your doctor can give you advice about this.

Should my child be on a gluten-free diet if they don't have coeliac disease?

No. If your child doesn't have coeliac disease and you take gluten out of their diet, there is a risk of them developing an allergy to gluten-containing grains. Children shouldn't be on a restrictive diet if they don't need to be.

How can I help my child live with coeliac disease?

Children can adapt very quickly to a new diet. They may have been feeling sick for some time so they often feel better on their new diet.

Explaining coeliac disease to your child

You could read an illustrated ebook with your child. It's about Jack, a boy who has coeliac disease. 

The trouble that Jack had (PDF, 1.98MB). It's written and published in the USA so some words are spelled differently.  

 

Getting the whole family involved

It's important to explain coeliac disease to the whole family - including siblings. You might like to go through your cupboards and label all gluten-free products with a smiley face sticker and products that are not gluten-free with a warning sticker to make sure everyone gets the message.

Cooking for the whole family

When cooking for the family, you can make many dishes gluten-free by simply changing certain ingredients (such as stock cubes and sauces). It is important to take sensible steps to prevent contamination with gluten-containing foods in the kitchen. This especially applies to toasters. Children with coeliac disease should have their own toaster.

If you are ever unsure about what food is gluten-free, Coeliac New Zealand has a range of resources - these can help you identify gluten-free products.

Going for regular check-ups

It is important for your child to have regular check-ups with their dietitian and family doctor. This is to make sure that your child recovers as expected. Your doctor will keep an eye on your child's growth. They may also do a blood test to make sure the coeliac antibody levels have returned to normal. It may take time (sometimes over a year) for the antibody levels to return to normal. Checking the antibody level can be helpful to make sure that your child is sticking to their gluten-free diet.

People with a confirmed coeliac disease diagnosis can have free flu immunisation. Check the page on flu immunisation and ask your family doctor for more information.

Talking to your child's school

Make sure your child's school or daycare know your child has coeliac disease. Children often share lunch boxes. Also, some play material (such as Play-Doh) contains gluten.

Where can I go for support for my child with coeliac disease?

Having a child diagnosed with coeliac disease can be a stressful life-changing event. But, by taking it one step at a time and taking advantage of the support available, you should start to get the hang of things within a few months. Check their page 'How do you eat gluten free?' especially if your child has just been diagnosed.

Contact Coeliac New Zealand for support and advice

Are there any developments in coeliac research?

Watch a Coeliac New Zealand video about the latest in research into coeliac disease.

Video transcript. Can't see this video on YouTube? Try viewing it on Vimeo.