From keto to paleo to raw food, Americans regularly attempt restrictive diets in the hopes of losing weight and/or improving their general health. Going gluten-free has gone mainstream in much the same way, with proponents touting it as a cure-all for many a malady. But for people with a debilitating intolerance, like those with celiac disease, the connotation of gluten-free as a trendy, fun fad reads like a slap in the face.
What even is gluten? To put it simply, it’s a general name for several proteins found in wheat, rye, barley and related grains. It’s the stuff that makes dough stretchy and suitable for baking. Our modern diets contain a lot of gluten-filled flour products: bread, pasta, soups, beer, sauces, cereals and endless more. For most people, this consumption isn’t a big deal, and they never give gluten a second thought.
But for a sizable population of unlucky others, specifically over 3 million Americans, eating even a couple breadcrumbs sets off a chain reaction of awful symptoms akin to a death sentence. When someone with the autoimmune disorder celiac disease ingests gluten, their body’s immune system mistakes the protein for a foreign pathogen, like a bacteria or virus, and sets off a cascading response that attacks the small intestine. As the body’s defense fights off this perceived invasion, it also damages the healthy cells lining the small intestine, namely the villi.
These villi are microscopic projections of the small intestine that increase the organ’s surface area and aid in the absorption of the food you eat. When they’re damaged, as in celiac patients, they flatten and atrophy, inhibiting their ability to absorb anything, including calories, nutrients and medicines.
This unnecessary immune response brings with it a seemingly endless barrage of symptoms. Research has identified over 200 symptoms that range from patient to patient and affect nearly every part of the body. While digestive problems — diarrhea, nausea, bloating, gas, cramping, vomiting, loss of appetite, constipation, weight loss, fatigue, to name just a few — appear to be the hallmarks of the disease, there are also plenty of seemingly unrelated symptoms.
Because celiac is an autoimmune disorder, it affects the entire body. Non-digestive complications arise due to malabsorption and the amount of stress the body experiences. These include iron-deficient anemia, weakened bones, migraines, depression, anxiety, infertility, skin rashes and nearly any other ailment you can name.
Not every celiac has the same symptoms, and some have none whatsoever. “Classical” celiac presents with obvious signs of digestive distress. People with “non-classical” celiac may have mild intestinal discomfort but mostly non-digestive symptoms. But people with “silent” celiac possess no visible indicators of illness, aside from perhaps a skinnier stature. This apparent blessing turns into a curse when you realize how much longer a correct diagnosis would take.
No matter the symptoms, everyone with celiac acquires villous atrophy and faces great danger when left untreated. If gluten isn’t removed from the diet, celiac puts its sufferers at a much higher risk of developing gastrointestinal cancers, nervous system problems like epilepsy and multiple sclerosis and other autoimmune disorders.
Early detection is imperative when it comes to celiac, but unfortunately the average diagnosis takes about five years. And that’s for symptomatic people; diagnosing silent celiac can take a decade. The older a person’s age at the time of diagnosis, the higher the likelihood they’ve accrued an auxiliary disorder or deficiency. Those older than just 20 have a 34% chance to have one; in other words, a whopping third of adults with undiagnosed celiac already have a serious complication from it. That statistic is even scarier in conjunction with the estimation that 80% of people with the disease remain undiagnosed.
Reasons for this shortage of diagnoses range from lack of awareness (on both patients’ and doctors’ parts) to embarrassment about the typical symptoms. There are countless other causes of digestive distress, from Crohn’s to ulcerative colitis to other food intolerances. And it’s not exactly pleasant to discuss how disgusting your diarrhea is or how often you run to the toilet with your cheeks clenched, whether it be with peers or medical professionals.
But even the “lucky” few who successfully identify gluten as their trigger have a long, arduous road ahead of them. That’s because a proper diagnosis requires individuals to keep the protein in their diets long after they recognize how toxic it is for them. The first step is a blood test that looks for the presence of certain antibodies, the body’s immune defenders, that indicate celiac. If that comes back positive, doctors will order an upper endoscopy, in which they stick a tube down the throat to biopsy the intestine for analysis.
The body produces these antibodies in response to gluten, so the only way for them to be present is if a person maintains consumption of it. Someone with celiac who has been on a gluten-free diet for an extended period will test negative. The endoscopy, considered the gold standard for celiac diagnosis, searches for signs of villous atrophy, which again would only be present with recent gluten ingestion. Because of busy schedules and insurance bureaucracy, the endoscopy often doesn’t happen until weeks after the bloodwork comes back positive.
This forces people with celiac to endure weeks of horrific symptoms, disrupting their lives and putting their health at risk. And the discomfort still doesn’t end after the endoscopy. Damage to the small intestine can take months to years to fully heal, depending on the extent and how long the disease has gone untreated. So long after people stop eating gluten, celiac can still affect their digestion and nutrient absorption.
There is no cure for celiac disease. There isn’t even medicine you can take to manage it, as lactase pills do with lactose intolerance. The only treatment is a strict, completely gluten-free diet. You can never eat gluten for the rest of your life. This means no more yummy baked goods, fried foods or pizza. Anything containing flour made from wheat, barley or rye is off-limits, as it will further damage the intestine and make symptoms recur. Fortunately, many gluten-free substitutes exist and almost live up to their gluten-full peers.
Doesn’t sound too challenging, does it? Just don’t eat wheat products and stick to alternative flours; that can’t be that hard, right? Well, here’s the nasty shock that every celiac has the joy of discovering: Gluten is everywhere. Wheat starch can be found in prescription and over-the-counter medications, nutritional supplements, toothpastes, beauty products, salad dressings, soy sauce, envelope glue, seasoned potato chips, gummy candies, sausages — I could go on forever.
Not only is there an endless list of products with “hidden” gluten, but cross-contamination makes many “gluten-free” products unsafe for people with celiac. Eating out is a nightmarish roll of the dice; most of the time, restaurants’ “gluten-free” options are prepared in the same area and with the same utensils as everything else. Because even a few particles of gluten can activate the celiac immune response, this contamination is serious and shouldn’t be taken lightly.
It’s extremely common to get “glutened,” especially right after diagnosis when people are still figuring out what exactly to avoid. Like most food intolerances, celiac requires hyperawareness of ingredient lists and proactive research into which restaurants can certify adherence to allergen needs. Often, people with celiac resign themselves to only eating food they’ve personally prepared. At least the FDA requires store-bought, labeled products to live up to their gluten-free promises, only permitting a minuscule amount of the protein that doesn’t surpass the celiac threshold.
Unfortunately, the increasing trendiness of a gluten-free diet has prompted many food vendors to advertise “gluten-free” products without insuring the claim’s validity. For example, Chipotle assures patrons with celiac that as long as they ask the server to switch gloves and avoid the flour tortillas and the corn products (which could be contaminated during the growing process), they can safely eat there. But what they don’t say is that workers grab from the lettuce with their gloved hands, and if earlier one touched a tortilla then handled the lettuce, it’s now contaminated and inedible.
Unless you have celiac, a wheat allergy, non-celiac gluten sensitivity or another digestive issue, a gluten-free diet provides no real benefit. People tend to associate eliminating gluten with losing weight and better health because a gluten-free diet prohibits many processed and fried foods. They’re benefitting from cutting out these sugary, calorie-dense and low-nutrition snacks and meals, not from cutting out gluten.
Gluten-free going mainstream isn’t necessarily a bad thing. With it comes heightened awareness of and accommodation for gluten-free lifestyles. While pricier and scarcer, gluten-free alternatives are steadily becoming more commonplace. Many grocery stores carry breads, noodles and endless more goodies made from the myriad other starches available.
The problem with the fad arises in the misleading advertising of mostly gluten-free goods as completely so. The FDA may regulate the labeling of products purchased at the store, but eateries can slap that buzzword on their menus without meeting the federal requirements that prevent contamination. Because most customers statistically don’t have a gluten sensitivity, these restaurants and cafes can easily get away with poisoning people under false pretenses. Effectively, the diet’s trendiness prevents many gluten-free options from actually catering to the people that need them.
