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Coeliac disease 101: autoimmune disorder that means you can’t eat gluten

Coeliac disease 101: autoimmune disorder that means you can’t eat gluten
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Explainer | Coeliac disease: all you need to know about the autoimmune disorder affecting Chelsea Clinton, Zooey Deschanel and others

Popular American actress Zooey Deschanel and Chelsea Clinton, daughter of former US president Bill Clinton, suffer from the same disease, and both are outspoken about it.

They have coeliac disease, an autoimmune disorder in which ingesting gluten – a protein naturally found in some grains – leads to damage in the small intestine.

We can thank the second-century Greek doctor and writer Aretaeus of Cappadocia, considered to be second only to the father of medicine himself, Hippocrates, for its name.

Aretaeus described the earliest account of a clinical presentation of the disease, which he called “koiliakos” after the Greek word koelia (for abdomen). He wrote: “If the stomach be irretentive of the food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs.”

Gluten is found in many grains, including wheat, barley, rye and triticale – a cross between wheat and rye – and sometimes oats. Photo: Shutterstock

People suffer from it because of genetic variations that are often inherited from a parent. Even though it is a hereditary disorder, not everybody with a genetic predisposition to it develops the actual illness, says Hong Kong-based holistic nutritionist Sandra Carvajal.

In coeliac disease sufferers, their immune system “perceives gluten as a toxin, and as a response, it starts attacking the small intestine causing inflammation that damages the villi”, she says. These are finger-like projections in the small intestine wall that regulate nutrient absorption.

In 2008, an archaeological dig in Italy unearthed a young woman from the first century AD. Her skeleton, which bore the signs of a failure to thrive in life, was analysed and showed the presence of a gene sequence associated with a high risk of coeliac disease as well as damage typically associated with coeliac disease.

Researchers concluded that her condition coincided with exposure to wheat cultivation, as communities began to cultivate crops and not just rely on hunting and gathering for food.

Gluten is found in many grains, including wheat, barley, rye and triticale – a hybrid of wheat and rye – and sometimes oats because of contamination.

Savvy shops, restaurants and canteens are providing gluten-free options – like these chocolate brownies. Photo: Shutterstock

Those who suffer, though, need to learn to avoid a lot more than just bread and anything made from wheat flour. Gluten is present in many foods, not just whole grain foods. It is often added to foods as a binding agent and to provide texture and flavour.

It can be present in foods you would never expect: soy sauce, some stock cubes, say, or deli meats and even ice cream.

The New Girl actress Zooey Deschanel was diagnosed with coeliac disease in adulthood.

Chelsea Clinton has avoided anything with gluten for years and has been energetic in spreading the word about what being coeliac or seriously gluten intolerant means, and how to eat well despite a diagnosis. Her wedding cake was reported to have been wheat- and gluten-free.

It is estimated that one per cent of the world’s population has coeliac disease, but only around a quarter of those who have it are ever properly diagnosed.

Deschanel, for example, reportedly battled for 13 years before she received a diagnosis. Until then, doctors believed her gut misery was caused by irritable bowel syndrome (IBS), or stress.

Coeliac disease leads to damage of the finger-like villi (left), which damages the lining of the small bowel (right). Illustration: Shutterstock

It is not uncommon for coeliac disease to be misdiagnosed as other gastrointestinal tract issues like IBS, because it can present with similar symptoms, Carjaval says.

Some people, Carvajal says, may not have any symptoms at all “but still suffer damage in the small intestine and the subsequent conditions created by malabsorption of nutrients”.

Others may struggle with gluten intolerance which might cause discomfort of the gastrointestinal tract, but is not the same as coeliac disease. The difference is that gluten intolerance or sensitivity do not damage the villi in the small intestine, she says.

If coeliac disease is suspected, blood tests can be done and results confirmed with a biopsy of the small intestine.

Many people claim to have gluten intolerance these days. Carvajal worries that it has become another popular trend because people have this misconception that going gluten-free means being healthier.

On her Instagram account, Deschanel recommends a favourite dish: an apple peanut butter salad – gluten-free, of course. Photo: Instagram/@zooeydeschanel

Some people mistakenly believe “that a gluten-free diet will help them with weight loss, yet you see them eating high amounts of gluten-free snacks”.

She warns these are often highly processed, loaded with saturated fat, sugar and sodium and are high in calories with little nutritional value.

Carvajal is right about the trend: negative media attention has given gluten very bad press. Unless you have coeliac disease or are properly gluten intolerant, though, avoiding gluten means missing out on some important nutrients.

On its website, Harvard University’s School of Public Health says there is much research from reliable sources that links eating whole grain foods with good health, including a lowered risk of cardiovascular disease and stroke, as well as type 2 diabetes.

Gluten may also help to sustain “good” gut bacteria. For most of us, having gluten will not do any harm, and probably does a lot of good.

For those diagnosed as having coeliac disease or a real gluten intolerance, the only way to manage it is with a lifelong gluten-free diet, Carjaval says.

Being gluten-intolerant doesn’t mean a boring diet. Deschanel holds a golden orange cauliflower with zesty lemon-pepper tahini and toasted almonds. ⁠Photo: Instagram/@zooeydeschanel

If that is you, be thankful you can eat more than just the shellfish prescribed by one London doctor in 19th century England. In 1888, Samuel Gee, a doctor working in London’s famous children’s hospital on Great Ormond Street, noted that a child who had symptoms of coeliac disease improved significantly on a diet of mussels, but suffered a relapse as soon as mussel season was over.

Sufferers can, though, eat all the beans, legumes, nuts, chia seeds, corn, flax seeds, millet, potatoes, quinoa, rice, soy and gluten-free oats they like, as long as they do not have allergies to these foods, as well as all non-grain products that include fresh vegetables, fruit and much else besides.

Carvajal says it is vital sufferers look for hidden gluten in soy sauce, canned soups, sour cream and cold cuts.

How to tell if a packaged food product is gluten-free

  1. Look for a gluten-free label.

  2. Check the allergen listing. If it has a list of common allergens that includes wheat, you can rule it out quickly. However, a lack of allergen labelling does not mean it is gluten-free. Barley and rye are not in the list of allergens required to be listed under US Food and Drug Administration labelling laws.

  3. Check for obvious ingredients. In addition to wheat, barley and rye, check for malt, brewer’s yeast and oats (unless specifically labeled gluten-free). Modified food starch is often found in baked goods, snacks, marinades, sauces, dressings, and soups. It may or may not contain wheat. (Source: Celiac Disease Foundation)

Carvajal also stresses sufferers should “stay away from those highly processed (high fat, high salt, high sugar) gluten-free foods”.

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