Coeliac disease in babies and children

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Coeliac disease hit the headlines recently when a study revealed the number of people diagnosed with the condition increased fourfold between 1990 and 2011. Experts say the rise is due to better diagnosis, but Coeliac UK says many people are still unaware they have it. Which is why it’s important to spot the signs early.

Coeliac disease is not an allergy, it is an ‘autoimmune disease.’ This means that when gluten enters the digestive system the body produces an antibody. One in every 100 people will develop coeliac disease, and the Department of Health recommends not giving any food containing gluten to babies under six months of age, to reduce the chances of your child developing either coeliac disease or an allergy or intolerance to wheat (which are different to an autoimmune disease).

What is gluten?

Gluten is a large protein found in wheat, barley and rye. For this reason some people may confuse coeliac disease with wheat allergy or wheat intolerance.

What does the gluten antibody do to make a coeliac person ill?

When the body produces an antibody to gluten it can attack the lining of the gut.  The lining of the small intestine is full of finger-like extensions called villi. The villi have a good blood supply, allowing nutrients from the food to be transported into the bloodstream to be taken to the liver.

People with long-term coeliac disease will have lost a large proportion of the villi in their intestines. It is estimated that the surface area of an adult’s healthy gut is the size of a tennis court, whereas the surface area of coeliac gut may be only the size of a dining table.

This destruction of the intestinal lining can lead to serious malnutrition and poor absorption of nutrients.

What are the symptoms of coeliac disease?

Inflammation and damage of the small intestine lining can lead to pain, discomfort and problems with growth. This may happen soon after introducing gluten in solids, but it might not occur until later in childhood.

Symptoms include the following, but your baby may have coeliac disease without having all these signs or symptoms:

  • Tummy pain
  • Pale and greasy poo due to poor absorption
  • Bloated tummy
  • Vomiting
  • Wind
  • Tiredness
  • Constipation
  • Reduced growth
  • Weight loss or lack of weight gain (falling below their weight centile), often easiest to spot around the buttocks
  • Skin problems such as dry and flaky skin
  • Dark circles under the eyes
  • Your child might be very highly strung and get very sad or angry about minor things. In children with undiagnosed coeliac disease they are not getting enough nutrition and suffer with the symptoms of a ‘blood sugar low’ which can make anyone feel cranky and emotional. They may crave high sugar foods to cope with this

How is coeliac disease diagnosed?

A blood test that simply counts the levels of the gluten antibody in the blood. This test is highly sensitive but opinions differ on what to do if a child receives a positive result.

Some doctors will then diagnose coeliac disease on the basis of the antibody results.  They will then prescribe a gluten-free diet that completely excludes gluten from the diet.  After gluten has been removed from the diet for a period of time they may retest the blood to confirm that the antibodies are no longer there (this means that the diet is truly gluten-free). They will also look for signs of recovery, and if growth improves and symptoms disappear they will recommend a life-long gluten-free diet.

Some doctors will want to confirm a diagnosis by keeping the child eating the gluten for several more months, and then will perform a biopsy to see that the gluten has definitely damaged the gut. If damage is found in the biopsy they will then recommend a life-long gluten-free diet.

The rationale for the blood test diagnosis is that the ‘cure’ of the gluten-free diet can begin immediately. This can be important for a child that isn’t growing and is suffering. The idea of continuing to eat gluten to test for intestinal damage in the future is that cutting out gluten from your child’s diet for life is a big step, and you may want to be sure with a diagnostic biopsy.

It’s worth speaking to several paediatric gastroenterologists and autoimmune experts to discuss these two options with respect to your child and her specific situations.

What foods does my child need to avoid because they contain gluten?

You will need to remove all foods that contain:

  • Wheat (including most bread, cous cous, pasta, foods thickened with wheatflour such as some sausages and bought soups)
  • Barley (including malt vinegar)
  • Rye

Some coeliac children also have to stop eating oats as they produce the antibody to oat ‘gluten’ too.

Family history

Your child is five times more likely to develop coeliac disease if another close family member has coeliac disease or if they or another close family member has thyroid disease, type 1 diabetes or other autoimmune diseases, so it’s important to mention this fact to your doctor during your child’s assessment.

What foods can my child still eat on a gluten-free diet?

The good news is that there are lots of foods they can eat, and for most of human history grains containing gluten have not been a big part of the diet.  So they can eat:

  • Meat
  • Fish
  • Vegetables
  • Fruits
  • Rice
  • Quinoa
  • Gluten-free pasta (made with potato and rice flours)
  • Gluten-free bread (made with potato and rice flours)
  • Gluten-free cakes and biscuits (made with potato and rice flours)

Living in the UK with coeliac disease – the good news!

The UK is one of the best countries in terms of availability of gluten-free food and good food labelling. So:

  • Most supermarkets have good ranges of gluten free-foods that you can be confident giving your child
  • You can also receive a prescription for some safe gluten free foods each week for your child
  • Food labels in the UK have to state if they contain gluten or are prepared in a factory where gluten-based products are made
  • Some national restaurant chains are very good at labelling food with gluten in it and making gluten-free options, eg, soup thickened with potato flour or gluten-free or flour-free cakes made with polenta or ground almonds

Does ‘wheat free’ mean that the food is gluten-free?

No! Wheat-free products may contain other grains, such as rye or barley. Gluten-free products may contain other wheat proteins so may not be suitable for children who are intolerant or allergic to wheat (as opposed to coeliac disease).

Is there a cure for coeliac disease?

There is no cure for coeliac disease as such, but your child will make a full recovery (including the regrowth of intestinal villi) by following a gluten-free diet. You will quickly see improvements in mood, and then growth will start to pick up when the gut is enough recovered (not immediately) to allow good absorption of nutrients.