Non-celiac gluten sensitivity is real — here’s how to know if you have it

Gluten has been getting a bad rap for a long time. But unless you’ve been officially diagnosed with celiac disease, chances are your request for gluten-free pizza will be met with an eye roll instead of an understanding head nod.

That’s because until recently, going gluten free was only really necessary for celiac sufferers; a gluten sensitivity, on the other hand, was regarded as a thinly veiled excuse to cut out carbs in the lead up to swimsuit season.

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In the last few years, however, the medical world has been looking more closely at non-celiac gluten sensitivity (NCGS), a disorder in which people experience bloating, gas or abdominal pain, diarrhea or constipation, nausea, headache, brain fog, fatigue, joint pain or numbness in the extremities hours or even days after consuming gluten. The kicker, however, is that people who suffer from NCGS test negative for celiac disease and wheat allergy.

Unfortunately, there’s still a lot that isn’t understood about NCGS, especially how to diagnose it.

“It’s still quite new and we’re trying to understand a lot about it,” says Alexandra Inman, a registered dietitian and co-owner of Vancouver Dietitians. “People with NCGS don’t have the same biomarkers as those with celiac disease, but often the symptoms go away when they follow a gluten-free diet.”

That may seem like an easy solution, but both doctors and dietitians warn people against self-diagnosing with NCGS and simply cutting out gluten since it may be hiding an underlying condition that could worsen if it isn’t addressed right away.

“The first step is to rule out the possibility of celiac disease because if you have it and don’t treat it, it can cause severe intestinal damage,” she says.

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Celiac sufferers will have similar GI symptoms to NCGS, in addition to nutritional deficiencies like anemia and dermatitis, while a wheat allergy will set off a number of reactions like nausea, vomiting, rash and even more severe issues like difficulty breathing and anaphylaxis. If you’re tested for celiac and a wheat allergy, and both tests come back negative, the next step is to undergo a food elimination diet, which will help you identify the foods that are causing distress.

This is especially important since your NCGS may not be a gluten sensitivity after all.

“It could be due to another type of carbohydrate that’s found in a lot of gluten-containing products,” Inman says. “Fructan is a type of carbohydrate also known as FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) that isn’t easily digestible, especially by people with IBS. We’re seeing more crossover now between people complaining of a gluten sensitivity but it’s actually linked to fructan.”

In fact, a recent study published in the journal Gastroenterology found that fructan caused more stomach upset in people who thought they were gluten sensitive than gluten did. FODMAPs like fructan reach the large intestine undigested and rely on gut bacteria to be fermented. In the process, it can cause gas and lead to discomfort, especially for IBS sufferers.

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The reality is, celiac disease and wheat allergies are far more rare than we believe — only one per cent of Canadians test positive for celiac and only 0.7 per cent have a wheat allergy — so these sensitivities are much more likely to be the culprits of any feelings of discomfort after consuming gluten (or fructan). This is why Inman encourages people to first see their doctor and then a dietitian to be guided through an elimination diet.

“People might automatically feel better after cutting out gluten, but it might not be the gluten at all,” she says. “If you have a sensitivity to something else or if you have celiac disease, you wouldn’t be eliminating the same foods. You might need to follow a low-FODMAP diet instead of a gluten-free one.”