I’ve always had a sensitive stomach. When I first moved to New York City, my issues — gassiness, constipation, the occasional diarrhea — worsened. In 2018, a gastroenterologist tested me for a slew of gastrointestinal conditions, including celiac disease, an autoimmune disease that makes people unable to safely consume gluten, a protein found in wheat.
My results came back negative and I was diagnosed with the enigmatic Irritable Bowel Syndrome, more fondly known as IBS, a cluster of aggravating gastrointestinal symptoms. I haphazardly tried the low-FODMAP diet — which involves cutting out a variety of hard-to-digest carbohydrates, including wheat, to help ease IBS symptoms — but gave up and succumbed to my symptoms.
Then, during Covid-19 lockdown, I ate a lot of pizza and got into bread baking. I mean, I was in NYC, of all places: Amid the apocalyptic sounds of sirens, at least I could still turn to a reliable slice of pepperoni. Around the same time, my fairly typical constipation worsened. In January 2021, I saw a dietitian and she recommended I first try cutting out gluten. With her help, I created a meal plan. It was like magic, in a month or so I could pass stool like a normal person.
While it’s important to note that while research is being conducted and this is a fairly subjective diagnosis, she said I likely had non-celiac gluten sensitivity (NCGS), also known as non-celiac wheat sensitivity (NCWS). NCGS is a “condition characterized by intestinal and extraintestinal symptoms related to the ingestion of gluten-containing foods in the absence of celiac disease and wheat allergy.”
“The symptoms may not be very different in both celiac disease and NCGS,” says Dr. Cuckoo Choudhary, a gastroenterologist with Jefferson Health in Philadelphia. “They can vary from bloating, gassiness, abdominal discomfort and diarrhea to constipation and weight loss. The non-GI symptoms, such as brain fog and tingling, can occur in both, but are more common in non-celiac gluten sensitivity.”
While experts estimate up to six percent of the population potentially has non-celiac gluten sensitivity, they’re divided on what causes it.
“It’s one of those things where we know it exists and we know how to treat it,” says Anne Lee, a dietitian at the Columbia University Celiac Disease Center. “We just don’t have good diagnostic tools for it, and we don’t have good information on why some people develop it over others.”
There’s much more research needed in this area — so for now, I’m explaining what we do know.
Bread losers
A lot of folks talk about gluten intolerance, but do you know its history? Celiac disease actually dates back to A.D. 100. The Greek doctor Aretaeus described the ailment as an abdominal problem, or the “The Coeliac Affection.”
Later, Dr. Samuel Gee, an Englishman, established the modern definition of celiac disease, noting it caused malnutrition and digestive issues, and could be cured by diet. However, experts didn’t know that gluten was to blame for celiac disease for years — until they noticed improvements in children with celiac during bread shortages in the Netherlands during World War II.
Meanwhile, researchers first observed an instance of NCGS around forty years ago, when a 43-year-old patient who didn’t show signs of celiac disease, remarkably improved their diarrhea through removal of gluten from their diet.
Since this instance, researchers have proposed two main ideas as to what causes these symptoms. The first argues that NCGS is caused by an immune reaction to gluten or another component of wheat. In one 2012 study, a researcher found that patients who identified as gluten sensitive had higher levels of antibodies that work against gluten. These decreased when the individuals went on a gluten-free diet.
Yet other experts maintain that many aren’t necessarily sensitive to gluten, but to fermentable, hard-to-digest carbohydrates found in wheat and other foods, like onions and garlic, called FODMAPS, which can contribute to IBS-like symptoms. When patients cut out gluten, they’re also cutting out a large portion of FODMAPs, which these critics argue can be the contributor to a reduction in symptoms.
While some elements of each theory are likely at play, there’s still no consensus on the exact beast behind NCGS. Even so, it’s clear: Cutting out gluten does appear to help people’s gastrointestinal issues. While research continues, many clinicians are going ahead and treating patients with this in mind.
“If gluten is really a trigger, cutting it out can make all the difference,” Lee says.
The yeast we can do
If you’re experiencing any tough gastrointestinal symptoms, rather than self-diagnosing, it’s important to speak to a medical provider. While doctors can diagnose celiac disease through a series of blood tests and/or biopsies of the small intestine, there’s no great way to diagnose NCGS; typically, it’s “a process of elimination,” says Lee.
Experts recommend starting with a gastroenterologist to rule out celiac disease and a wheat allergy. If you rule those out, the next step would be a dietitian. Your dietitian might recommend you go on an elimination diet, like the low-FODMAP diet. The diet lasts four weeks, until you reintroduce foods, like gluten, and see what spurs symptoms.
There are also breath tests that test for lactose and fructose allergies — so you can rule them out right away. (However, these have a fairly large margin of error if not conducted perfectly.)
Lee cautions against going on any restrictive diet without the help of a professional, as it can lead to nutritional deficiencies. If by the end of the process, your provider helps you determine that cutting out gluten does improve your symptoms, they’ll give you tips on how to maintain a balanced diet.
“It’s not just cutting out gluten, it’s also what you’re going to put in its place,” Lee says. “When you take gluten out, you’re taking out a big source of iron, B vitamins and fiber in the diet.”
Adding in gluten-free grains like quinoa, brown rice, amaranth and millet, as substitutions, can ensure you maintain a balanced diet. If you do receive an NCGS diagnosis, this also doesn’t necessarily mean you can’t ever eat gluten again.
As a bread aficionado, I for sure was bummed when I realized it was the source of my pain. But luckily, gluten sensitivity exists on a spectrum. While some might experience severe symptoms, others, like me, can sneak in some bread here and there.
“Since celiac disease is an autoimmune disease, we want our patients to be 100 percent on a gluten-free diet, no cheating, no holidays, nothing,” says Lee. “With non-celiac gluten sensitivity, not that we would advocate cheating, you’re not going to be doing damage to the body if a crumb of gluten got in or you took a holiday or something.”
No matter what, you want to make sure you stay in touch with your dietitian — and compile a care team to make sure you have your symptoms under control.
“With celiac disease, we can test their blood, do an endoscopy to see if their intestines have healed,” Lee says. “But with gluten sensitivity, it’s, ‘Are you feeling better?’ You should be followed by a gastroenterologist, a primary care doctor and dietitian to check your vitamin and mineral levels. You should have a full package of coverage.”