If you have the autoimmune condition coeliac disease (CD), you need to avoid gluten for life. That, according to current medical knowledge, is non-negotiable. But with only an estimated one in 100 of us being affected by CD, the rise in popularity of gluten-free (GF) products doesn’t seem to add up. So how do you know whether you need to cut gluten out of your diet?

What is gluten?

Gluten is found in grains, which are seeds from cereal grasses that have evolved to survive from season to season. Wheat was the earliest recorded grain to be cultivated and is a staple food for more than a third of the world’s population.  

Although there are hundreds of different proteins found in wheat, 80% of the protein content is made up of two specific protein molecules (also found in barley and rye), gliadin and glutenin, which combine to form what we call gluten.

As the name implies, gluten has glue-like properties that give dough its stretchy consistency and enables bread to rise by trapping the carbon dioxide gases produced by the yeasts feeding on the sugars, creating its spongy texture.

In order to digest protein, stomach acid and enzymes released from the pancreas go to work to break down the protein in our food into peptides and individual amino acids, which are then absorbed into the bloodstream and utilised by our cells.

What is coeliac disease?

Coeliac disease is a condition that often occurs in genetically susceptible individuals whereby gluten triggers an autoimmune reaction that can damage the lining of the small intestine. This leads to symptoms such as abdominal pain, vomiting, diarrhoea and weight loss.

Because CD is an autoimmune condition and not an allergy or intolerance, sufferers will not have anaphylaxis or symptoms usually associated with an allergic reaction. Instead, they are likely to have vomiting and diarrhoea, with longer-term damage occurring on the inside.

What treatment is available for coeliac disease?

The only known treatment for CD is the total exclusion of gluten. Although this is easier said than done. Today, on top of the obvious culprits like cereals, pasta and bread, gluten can be found in everything from sausages and beer, to soy sauce, salad dressings and even some cosmetics.

There has been media attention on tablets that are claimed to help break down gluten. However, Kathryn Miller, former head of food policy at Coeliac UK, told Optimum Nutrition that it is not advisable for individuals with CD to take any kind of supplement as a substitute for a GF diet.

“A number of enzyme supplements are available which claim to break down gluten when they are taken with foods, and are marketed to people with coeliac disease and/or gluten sensitivity,” she said.

“Independent research of five currently available digestive enzyme supplements shows that they are ineffective in degrading the toxic parts of gluten. The only current treatment for coeliac disease is a strict gluten-free diet for life.”

Try this gluten-free apple and cinnamon cake

Can you be gluten intolerant without coeliac disease?

Gluten-avoidance is considered by many to be something of a fad, but it is now estimated that 8% of the UK population avoids gluten as part of a ‘healthy’ lifestyle.

There is a view that gluten is a difficult protein for humans to digest and that gliadin, a large component of gluten, is resistant to digestive enzymes. In 2012, one group of scientists also agreed that there was a spectrum of gluten-related disorders beyond coeliac disease, referred to as non-coeliac gluten sensitivity (NCGS).

The symptoms of NCGS can mimic those of CD but without the autoimmune response and subsequent tissue damage to the gut lining and potentially other tissues in the body, making its clinical diagnosis challenging. In fact, today the only diagnostic criteria of NCGS is the reported improvement of symptoms when gluten is excluded from the diet.

One trial also found that NCGS is the cause of irritable bowel syndrome (IBS) in 20% of IBS sufferers.

What is a low FODMAP diet and can it support gluten sensitivity?

FODMAP refers to fermentable oligosaccharides (e.g. fructans found in wheat, rye and some vegetables); disaccharides (e.g. lactose, found in milk); monosaccharides (e.g. free fructose found in honey and some fruit); and polyols (e.g. sorbitol and mannitol).

These are carbohydrates and sugar alcohols found in everyday foods which are not absorbed easily by the gut and so begin to ferment, causing painful bloating and gas.

One study found no evidence that gluten affected NCGS subjects. But what it did reveal was that in “all participants, gastrointestinal symptoms consistently and significantly improved during reduced FODMAP intake” and that “NCGS, as currently defined, might not be a discrete entity or that this entity might be confounded by FODMAP restriction”.

Despite this, however, Professor Peter Gibson, head of the department of gastroenterology at Monash University, Victoria, Australia who led the study, said that this did not mean that the NCGS-debate was over.

“It tells us that it is likely that, for most people who believe they are gluten intolerant, without coeliac disease, gluten is not the cause,” he said. “It may be other components of wheat, rye and barley. It does not tell us that gluten sensitivity does not exist.”

Because of the findings, however, Gibson says that NCGS individuals who have IBS might benefit from a low FODMAP diet rather than a GF diet.  

"I feel like I am looking happier and healthier"

Felicia Kwaku, a senior nurse, says that she had a very sensitive gut for many years, despite being given the ‘all clear’ from CD. She would “flush” if she ate “anything white”, and had a painful, tender stomach, changeable bowel movements, and often felt bloated.

In 2013, she was on proton pump inhibitors and had developed a bleeding duodenal ulcer and Helicobacter pylori infection. She was advised by a gastroenterologist to cut out tomatoes and coffee but, after consulting a nutritional therapist, excluded gluten from her diet.

Since cutting out gluten she says she has less bloating, feels less heavy and more energised. But vigilance is key, she says. “I can’t take anything for granted as gluten winds up in places that I would never have expected.”

 Kari Nogle has also recently cut out gluten in an attempt to help her thyroid.

“Upon discovering I had thyroid nodules… I have committed to at least a year without gluten to see if it helps save my thyroid. The first two weeks were especially difficult. Many of my old go-to foods contain gluten, and I didn’t have replacement foods in place yet. Plus, I wasn’t used to having to think before putting food in my mouth.”

Despite not knowing yet whether her new regime has helped her thyroid, Kari says that she feels much healthier without gluten.

“A happy, unexpected side effect is that I have more mental clarity and enhanced memory and recall,” she says. “I feel like I am looking healthier and fitter due to giving up gluten. A family member who hadn’t seen me for a few months remarked about it.”

She has, however, noticed an improvement in her ability to swallow — something that had been affected by her thyroid problem.  

However, Kari remains concerned that gluten might prove not to be the culprit for her condition. “I won’t know for several months when I am re-sonogramed. If the size of the nodules has not decreased, then I’ll remove other possible culprits from my diet.”

Lack of diagnosis

Whilst the demand for GF products is growing, Kathryn Miller said diagnosis rates for CD are still very low and so Coeliac UK wants to try to find the “estimated half a million people with coeliac disease who don’t yet know they have it”.

However, as Professor Gibson’s research has shown, for non-coeliacs, gluten may not be the enemy. So individuals who feel that they might benefit from going GF may wish to discuss it with their GP first. And where CD is not the problem, it may also be worth investigating FODMAPs to see if there is a food on that list which is causing problems.

Following a GF diet is not easy and, in the long run, may not be worth the inconvenience and expense. But if you do choose to cut gluten from your menu, look for whole food replacements that will keep you nourished.

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