Gluten Sensitivity Insensitivity

A recent YouTube video has garnered social media applause. Late-night host Jimmy Kimmel shoves a microphone into the faces of people who eat gluten free, asking if they know what gluten is. They don’t. Kimmel is a comedian, and edited his ambush interviews to maximize laughs, but many friends I previously trusted called this montage proof that “gluten sensitivity,” one of today’s fastest-growing food issues, doesn’t exist. Gluten avoiders are ignorant, therefore the problem doesn’t exist, QED.

Many people have hopped the “gluten sensitivity” bandwagon, avoiding gluten because it appears moddish. Like fat substitutes in the 1990s, or the Atkins Diet in the 2000s, gluten avoidance gives uninformed hippies the glimmer of worldly wisdom. But their trendy behavior tars people suffering legitimate gluten intolerance. Having helped a dear friend through years of pain, embarrassment, and helplessness due to gluten problems, stunts like Kimmel’s offend me personally. So here’s a legitimate, fact-based introduction.

Gluten is a protein composite present in certain grains, especially wheat. It creates bonds between fibers, giving wheat bread the firm, pliable texture cornbread lacks. Gluten bonds so powerfully that processed food manufacturers add wheat flour to many foods you wouldn’t expect, like cheese sauces, to grant a passably food-like texture. Advertisers historically used wheat emulsion to paste up handbills and posters, because air-dried gluten sets harder than Portland cement. “Gluten,” in Latin, means “glue.”

Importantly, certain people lack the ability to digest wheat, rye, or barley gluten. Science doesn’t yet know why. In the best-known gluten intolerance, celiac disease, gluten compounds actually perforate sufferers’ intestinal walls, causing vital nutrients to leak through undigested. Left untreated, patients’ perforations become large enough to allow fecal matter directly into the bloodstream, resulting in septic poisoning. For untreated sufferers, it’s a coin toss whether they’ll starve to death before suffering lethal septic shock.

For most people who don’t suffer gluten intolerance, actual gluten digestion problems appear childishly comic. The first symptom many sufferers endure after inadvertently consuming gluten is uncontrollable farting. But when sufferers flee public scrutiny, they and their loved ones see more significant symptoms, including painful diarrhea, bloody stool, fatigue, hormone and electrolyte imbalance, migraine headaches, rheumatoid arthritis, misdiagnosed fibromyalgia, violent PMS, lupus, unexplained infertility, and (no kidding) bipolar disorder. Gluten sufferers often live functionally housebound.

Legitimate gluten intolerance tests do exist, but they have limits. The most reliable test involves a complete upper and lower endoscopy, meaning running a camera tube down a patient’s throat and another up the rectum. Though false positives are vanishingly rare with this test, false negatives run as high as twenty percent, meaning if you endure the most reliable test, and you have gluten intolerance, there’s still a one-in-five chance your results will be wrong.

(Edit: after writing the above paragraph, my source informed me I had a misunderstanding. The test with a high false negative rate isn't the most reliable test; it's the test you have to take to qualify for the most reliable test. The whole issue is wrapped up in layers, and possible gluten intolerance sufferers have to educate themselves and be their most passionate advocates.)

Therefore, even the fact you’ve tested negative for celiac and other gluten intolerances, doesn’t mean you have no problem. Celiac diagnosis rates have increased geometrically, doubling roughly every fifteen years. That’s slow growth, admittedly, but celiac and other diagnosable intolerance rates currently run about two percent in America. If two percent of Americans had lymphoma, we’d feel outraged if comedians treated lymphoma as ridiculous, and lymphoma patients as uniformed rubes. And with good reason, too.

The friend I helped with gluten intolerance flunked her celiac test because her endoscopy missed any celiac perforations. Her doctors shrugged. She’d suffered years of severe central-body weight issues, a sign of cortisol imbalance. Her primary care physician thought she had pheochromocytoma, but was unable to locate a tumor. She was embarrassed to admit her chronic farting problem, which might’ve hastened a diagnosis, but maybe not; non-specialists aren’t much trained at spotting digestive disorders.

My friend finally visited a nurse practitioner, who observed her body structure, particularly the disproportion of her weight distribution to her skeletal structure, and identified a celiac-type sufferer. This nurse wasn’t trained at spotting digestive disorders, either; she simply recognized my friend suffering the same symptoms her own daughter, a celiac patient, endured before her diagnosis. Since my friend’s test returned what we now consider a false negative, her timely diagnosis was pure coincidence.

I’ve seen my friend if gluten quantities smaller than a bread crumb get into her food. Celiac sufferers react to gluten concentrations below twenty parts per million. I’ve seen her doubled over in pain, clutching her abdomen, sweating through the painful farts while waiting for diarrhea to hit. I’ve seen her lose emotional control, seen her attention span dwindle to mere seconds, seen her sleep north of twelve hours because muscle fatigue leaves her depleted.

So by damn, don’t tell me gluten sensitivity doesn’t exist because hippies are ill-informed. The only wholly foolproof diagnostic test for celiac spectrum gluten intolerance is to go off gluten altogether for two months or more. If symptom constellations abate, winner winner chicken dinner. Sufferers can exclude gluten, one of the more common food intolerances, from their diets with moderate effort. But false friends mocking their health issues undermine confidence, making legitimate sufferers avoid treatment.

Like prior food fads, gluten avoidance will lose its hip cachet soon enough. But legitimate sufferers will remain, needing to scrupulously police their food intake. For people with clinical gluten intolerance, their medical necessity is as real as people with peanut issues or bee sting allergies. You wouldn’t mock a religiously devout friend out of keeping kosher or halal, would you? Then how dare you mock your friend for avoiding a simple, preventable food reaction.