By Marta Ustyanich
What Is Gluten?
Seth Rogen takes a crack at the answer in a fitting scene from This Is The End: “Gluten’s a vague term. It’s used to categorize things that are bad … Calories. That’s a gluten. Fat. That’s a gluten … Gluten means bad shit and I’m not eating it!”
In recent years, gluten has become the butt of Hollywood’s joke and the new favourite buzzword of the food industry. This oft-maligned compound became the subject of a humiliating Jimmy Kimmel Live segment, where unsuspecting gluten-free devotees painfully tried to answer this same question. “Maybe gluten doesn’t exist!” Kimmel speculated, pretty much summing up the collective ignorance surrounding gluten, the latest “bad guy” to explode onto the dietary scene with as bad a rap as carbs and fats before it.
Well, gluten does exist, but is gluten-free really the way to be? Emerging research is helping us separate gluten fact from gluten fiction by shedding new light on what exactly it does inside our bodies.
Gluten is a complex protein that’s been around since the dawn of agriculture some 10,000 years ago. It’s found in wheat, rye, and barley, and has become a staple in some of our favourite foods, like breads and pastas, thanks to its elastic properties and ability to trap air. The issue? Unlike any other protein that we consume, gluten is the only one that humans can’t digest completely. The reason for this lies in a complex maze of 164,000 to 334,000 protein-encoding genes found in wheat (compared to our 20,000 to 25,000) that scientists are only now starting to unravel.
While the majority of people are able to tolerate it without issue, gluten — particularly its constituent protein component, gliadin — is the cause of celiac disease in about one percent (or about 70 million) of the general population, with an estimated 60 to 90 per cent of cases still undiagnosed. For celiac sufferers, gluten is the deadly culprit that triggers an autoimmune response that destroys the gut lining — the miniscule villi that play a crucial role in the absorption of nutrients in the body. If gone untreated, celiac can develop into life-threatening conditions, putting sufferers at an increased risk of early death. Statistics further suggest that celiac is the most prevalent genetically linked disease, and occurs more frequently than type 1 diabetes, cystic fibrosis, and Crohn’s disease.
Toronto resident Katie Pounder received her diagnosis in 2008 following an intestinal biopsy. “I’d put off getting tested for years because beer was my alcoholic drink of choice and the blood test was expensive and not covered,” she recalls. But after a few weeks on a gluten-free diet, Katie was doing much better. “I didn’t realize how bad I’d been feeling for the previous five years until I knew what ‘normal’ actually felt like in comparison,” she says.
Katie’s family was next to get tested after learning about the genetic component to celiac. Her sister’s diagnosis came back positive. “She hadn’t had as many symptoms before her diagnosis, but after removing gluten from her diet, she had similar positive reactions in her body and she is now even more sensitive to cross-contamination issues than I am,” says Katie, who also suspects that her grandmother suffered from gluten-related digestive issues.
Putting Gluten On The Map
But if gluten is really the culprit it’s made out to be, why is it only now coming under the microscope and into the spotlight? “We now have knowledge that we didn’t have before and technology that was unthinkable until a few years ago,” explains Alessio Fasano, MD, director of Boston’s Center for Celiac Research and Treatment, a world-renowned celiac expert, pioneering researcher of celiac in the US, and co-author of Gluten Freedom.
Katie echoes that same helpless feeling. “After I was diagnosed, my mom happened upon an online article that talked about symptoms of celiac disease in children, and she called me in tears saying she was a terrible mother because as a child I had almost all of them,” she recalls. “I reassured her that no one knew about celiac in the ’80s.”
It was only in the 1970s that the first diagnostic tools were developed and population studies performed — even though it’s believed that the first case of celiac was recorded 2,000 years ago by a celebrated Greek physician. Researchers had mistakenly concluded that celiac was confined only to northern Europe, where agricultural practices were most recently introduced. But worldwide population studies beginning in the 1980s proved that the disease was actually far more widespread than previously thought. “Until the very recent past, we thought that celiac disease didn’t exist in North America,” writes Fasano in Gluten Freedom. “From the epidemiological studies, we now know that no region in the world is spared from the celiac disease epidemic.”
The New Kid On The Block
Although Fasano was already treating a small group of patients when he founded the Center for Celiac Research in Massachusetts in 1996, the gluten-free dietary landscape was nothing like what it is today. “In those early days, there was very little commercially available gluten-free food,” writes Fasano. “The old joke was that you weren’t sure if you were supposed to eat the product or the box it came in because they both tasted about the same!”
The gluten-free industry has expanded over the past four years, rising from $11.5 to $23 billion USD, according to marketing research firm Nielsen. Based on these numbers, Fasano concludes that, with a large portion of celiac sufferers still undiagnosed, the majority of gluten-free products consumers buy are because they perceive them as healthy or as a way to lose weight.
Only a few years ago, the gluten-free diet was more popular than both the low-carb and low-fat diets. One of the biggest misconceptions about going gluten-free is that, like the Paleo, vegan, or South Beach diets, it’s seen as just another lifestyle trend, or a magic weight-loss pill instead of the treatment that it actually is. “It’s not necessarily healthier than a diet that contains gluten,” says Abby Langer, RD, of Abby Langer Nutrition in Toronto. “There’s a lot of gluten-free products that are crap. Gluten-free cookies are still cookies.”
Fasano agrees that there is no scientific link to weight loss and ditching gluten. “If you go totally naturally gluten-free and don’t use any substitutes like gluten-free pasta, bread, etcetera, and therefore you eat mostly fresh fruit, fresh vegetables, fresh meat, and fresh fish, then yes, you will probably lose weight — not because gluten is making you gain weight, but because you’ve got a healthier diet,” he explains.
Gluten & The Gut
In fact, scientists are now beginning to validate the truth of Hippocrates’ famous declaration that “all disease begins in the gut.” The diet we consume may actually play a major role in developing not only celiac disease, but other diseases and illnesses. If you’ve ever eaten probiotic yogurt, you were contributing good bacteria to your gut flora, or your “microbiome.” The bacterial microbiome within us collectively contains 100 times more genes than we do, and it can change over time. “It’s well known that diet, together with the use and abuse of antibiotics, is the most influential environmental factor dictating the microbiome in the gut,” explains Fasano. Researchers believe that it’s our individual microbiomes that hold the balance between health and disease.
With immune diseases on the rise over the last 50 years, researchers are starting to make the undisputable link to our increasingly processed fast-food diets. “It’s hard for me to believe that these sudden and fairly drastic changes in our eating habits would have no consequences on the composition of our microbiome and therefore on our health and well-being,” writes Fasano. That’s why both Langer and Fasano insist on the importance of a whole-foods diet above all, if overall health is the goal and no sensitivity to gluten exists.
“I think it’s more healthful for a person to eat a good, well-rounded diet of whole foods and not omit gluten if they’re not sensitive,” says Langer. And as Fasano explains, our use of antibiotics and over-reliance on prepackaged and highly processed foods that are full of preservatives and fillers can actually disturb the delicate bacterial balance in the gut and lead a genetically predisposed individual to develop celiac.
The Gluten-Sensitive Gut
A definitive celiac diagnosis consists of a host of gastrointestinal and other symptoms, positive blood tests, the presence of genetic biomarkers, an endoscopy confirming intestinal damage, and, finally, the resolution of symptoms once the diet is implemented. However, the diagnosis of celiac’s little cousin, gluten sensitivity, isn’t as clearly established. The diagnosis is one of exclusion, where both a wheat allergy and celiac are ruled out, and symptoms are resolved by eliminating gluten from the diet. Though scientists aren’t sure if there is a genetic component to gluten sensitivity, researchers are getting closer to finding biomarkers in the blood or tissue that can be used for diagnosis. They speculate that six per cent of the US population may be affected by this malady.
It’s not surprising then that there is still considerable skepticism among medical professionals about gluten sensitivity. “I’m not sure if gluten sensitivity even exists,” says Langer, offering another possible reason for the perceived resolution of symptoms: most gluten-containing foods are heavy on carbohydrates, which bind four times their weight in water, she explains. “So, theoretically, someone who cuts most of the carbs out of their diet — and this has nothing to do with gluten — usually feels better within a few days,” she says, since the bloating and water retention that is commonly associated with eating things like bread subsides when carbs are eliminated.
Until scientists are able to definitively prove the existence of gluten sensitivity, perhaps the most important takeaway is that, unlike with celiac disease, there is no intestinal destruction with gluten sensitivity. What we understand so far is that individuals with gluten sensitivity who consume gluten will experience the typically common symptoms because of gluten exposure, but not the long-term consequences, like complications over time, which is very different from celiac disease, explains Fasano. So while it’s not absolutely necessary to stick to a gluten-free diet, nixing gluten can help resolve potential gluten-related symptoms.
Gluten: The Clinical Chameleon
For those who have been diagnosed with celiac, however, keeping gluten out of their diet isn’t optional. Before finally working up the courage to get tested, Katie’s symptoms became unmanageable. Working two jobs, she resorted to a drive-thru and take-out diet, and her digestive system “broke down in protest,” she recalls. “I had a blockage in my intestine and colon for almost a month, and had to go to the emergency room. They told me I was a few days away from needing surgery because the blockage was so bad.” She suffered everything from stomach pain, to headaches, to constipation and bloating. “I was offered seats on the subway several times by strangers who assumed I was pregnant,” shares Katie.
In fact, the range of symptoms can be much broader, even affecting other organs. “I describe celiac disease as a clinical chameleon,” explains Fasano. He offers examples of symptoms including chronic diarrhea, weight loss, nausea, vomiting, anemia, joint pain, skin rash, and even neurological and behavioural changes, as well as miscarriage and infertility.
And until there is more research, the gluten-free diet is the only hope of relieving these debilitating symptoms. “For celiacs, the gluten-free diet is like insulin for diabetics — it is a treatment, even if it’s a diet,” says Fasano. The good news? A celiac who is successfully treated with a gluten-free diet becomes no different from a non-celiac, even in terms of life expectancy.
The Cost Of Gluten Freedom
Katie’s diagnosis came with another reality check when she stepped into her local health-food store to stock up on gluten-free eats. “I burst into tears when I realized how expensive gluten-free products are,” she recalls.
But after seven years on the gluten-free diet, she’s feeling more optimistic about her diagnosis. “I feel quite lucky to have been diagnosed at a time where options and general knowledge are increasing daily,” she says. “With information and sharable tips on the Internet, it’s much more manageable and I don’t miss many things that I can no longer eat.”
Fasano is also looking on the bright side. “Most of my patients appreciate the fact that although celiac disease is a lifelong chronic condition, its current treatment is, after all, a diet. It’s painful at the beginning. It’s complicated to implement, but still, it’s a diet with no side effects and no complications,” he explains. In fact, if preliminary research findings hold up, Fasano even suggests a possible shift from treatment to prevention in the next several years.
And the best part? You can still have your cake and eat it, too! Just check the packaging for the gluten-free seal. And for the love of gluten, if you haven’t been diagnosed, just eat your poor mother’s pasta already!