Gluten intolerance: Sensitivity without damage

It’s not uncommon to hear the terms “gluten intolerance” and “coeliac disease” used interchangeably. However, they are distinct conditions with different causes, implications, and treatments. For older people, understanding the nuances can be vital to maintaining a healthy, symptom-free life.

Gluten intolerance, also known as non-coeliac gluten sensitivity, is a condition where people experience a variety of symptoms when they consume gluten. These can include bloating, stomach cramps, diarrhoea, tiredness, and even irritability or brain fog. However, gluten intolerance doesn’t result in any damage to the small intestine or trigger the autoimmune reaction seen in coeliac disease.

Coeliac disease: An autoimmune disorder with serious risks

Unlike gluten intolerance, coeliac disease is a serious autoimmune condition in which the immune system reacts abnormally to gluten, damaging the lining of the small intestine. This damage interferes with the absorption of nutrients and can lead to a wide range of health problems, including vitamin deficiencies, bone thinning, anaemia, fatigue, infertility, and even certain types of cancer if left untreated.

Consultant Gastroenterologist at the Royal Melbourne Hospital, Dr Jason Tye-Din, said in an article for the Coeliac New Zealand website that the terminology around these conditions can be confusing.

“The terms ‘gluten intolerance’, ‘wheat intolerance’ and ‘gluten sensitivity’ can be quite confusing,” he said. “Some doctors use the term gluten sensitivity to describe people with medical symptoms… but the person does not fit all the criteria to make a definite diagnosis of coeliac disease.

“In coeliac disease the sufferer’s immune system reacts abnormally to gluten,” Dr Tye-Din explains, “causing small bowel inflammation and damage and a variety of problems such as poor nutrient absorption, vitamin deficiencies… and thinning of the bones.”

He stresses that timely diagnosis and treatment with a strict, lifelong gluten-free diet can prevent or even reverse many of these complications, and that the distinction between these two conditions is vital.

Diagnosis and testing

While gluten intolerance may not require lifelong strict dietary changes, coeliac disease does. In people with coeliac disease, even tiny amounts of gluten can cause harm, meaning that cross-contamination and food labelling become important aspects of daily life.

To determine whether someone has coeliac disease, doctors typically begin with a simple blood test known as coeliac serology. If the results suggest coeliac disease, a biopsy of the small intestine is usually carried out to confirm the diagnosis. Only after coeliac disease is definitively ruled out should gluten intolerance be considered. At that point, a dietitian-guided gluten-free trial may help determine whether symptoms improve.

The New Zealand picture

This is not a rare issue in New Zealand. It’s estimated that around one to 1.2% of the population, roughly 60,000 to 70,000 people, have coeliac disease. Alarmingly, about 60 to 80% of those cases remain undiagnosed. This means tens of thousands of New Zealanders may be unknowingly living with a condition that can affect nearly every part of their body.

For those diagnosed with coeliac disease, the only effective treatment is a lifelong gluten-free diet. This allows the intestine to heal, symptoms to resolve, and the risk of long-term complications to diminish.

Packaged loaves of bread on a shelf labeled gluten free

The cost of gluten-free living

However, gluten-free living isn’t always easy or affordable. A 2023 New Zealand survey found that more than half of people with coeliac disease spend over $50 per week on gluten-free foods. Only a small number receive any subsidised help through prescriptions, despite rising food costs.

Living with gluten intolerance

For people who are simply gluten intolerant, the story is different. These individuals may benefit from reducing gluten in their diets, but they are not at risk of the long-term health consequences associated with coeliac disease.

And because there’s no underlying intestinal damage, the diet can be more flexible. In some cases, the discomfort might actually be due to other factors such as irritable bowel syndrome, FODMAP sensitivity, or even stress, rather than gluten itself.

It’s essential to remember that removing gluten from your diet without medical guidance can lead to unintended consequences, such as missing out on fibre or essential nutrients like B vitamins. That’s why experts advise testing and a proper diagnosis before making drastic dietary changes.

Expert advice and next steps

Dr Tye-Din underscores this point, saying in the article, “Coeliac disease has very clear diagnostic criteria. In contrast, gluten intolerance is associated with unpleasant symptoms … [but] there is minimal evidence that a gluten-free diet is beneficial to maintain long-term health in this setting.”

So, what should older New Zealanders do if they suspect gluten may be affecting their health?

First, see your GP and ask for the coeliac blood test before removing gluten from your diet. If the test is positive, your doctor will likely refer you for further testing. If it’s negative, other causes can be explored. In both cases, working with a trained dietitian can help you manage symptoms effectively and safely.

The bottom line

As awareness around gluten-related conditions grows, so too does the importance of proper diagnosis.

By understanding the difference between gluten intolerance and coeliac disease, older Kiwis can take control of their digestive health, armed with facts, not fads.

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