(Tony Cenicola / The New York Times)

December 9, 2020

If Not Celiac, Then What?

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Humans have a long and complicated history with gluten. Celiac disease was first described in 1888 and identified as early as the 1000 CE. Celiac disease is an autoimmune condition where gluten causes an immune inflammation in the small intestine, leading to discomfort. Celiacs need to completely and permanently avoid any form of gluten in their diets. Though not incredibly common, people have paid a lot of attention to this gluten-free lifestyle. Awareness of Celiac disease and concerns over gluten intolerance have contributed to creating a $2.6 billion market for gluten-free products. Non-Celiac gluten sensitivity is the most formal of these supposed gluten intolerances and exists as more of an enigma than anything.

NCGS is controversial but may be even more common than Celiac disease. Although reports of non-Celiac patients showing gluten intolerance have been published since the 1970s, it was not until recent years that a revision of the nomenclature for gluten-related disorders included non-Celiac gluten sensitivity. Frequently a self-diagnosis, the true prevalence of NCGS among Americans is difficult to establish. NCGS is generally described as an intolerance towards gluten filled foods in people that don’t have Celiac disease or a wheat allergy. The symptoms of NCGS can be highly variable and include bloating, abdominal pain, diarrhea — symptoms mimicking irritable bowel syndrome — nausea, acid reflux and constipation. Individuals may also have non-intestinal symptoms, such as generally feeling unwell, fatigue, headaches, foggy mind, numbness, joint pains or skin rash. The strangest part is that modern medicine can’t find anything wrong with the people reporting these symptoms. That said, many have reported improvement in symptoms after ceasing consumption of glutenous foods, but, as of now, no specific symptoms have been identified. 

To diagnose non-Celiac gluten sensitivity is a cumbersome process, and is only confirmable by self-reports of people who have given up gluten withdrawal and experimental findings. The overlap between the symptoms of NCGS and Celiac disease, and the ambiguity of NCGS’s nature make it quite difficult to perform studies on it. Researchers have been attempting to find its pathology for decades, but they have not been able to reach a conclusion. Unlike a Celiac, a NCGS individual’s immune system doesn’t attack its body’s own tissue, nor have scientists found damaged intestinal villi, small, hair-like projections that line the inner wall of small intestine. 

However, some scientists claim that gastrointestinal symptoms are present in NCGS, as one study was able to identify a group of patients as NCGS based on their gastrointestinal symptoms after consuming gluten in an experimentally designed diet. That said, another study failed to find a statistically significant occurrence of the same symptoms in those who self-identified as NCGS patients. Clearly, the pathology of NCGS remains largely unclear, and there is contrasting data on the trigger of this condition. More comprehensive research needs to be conducted to reach a definite conclusion. 

Despite the lack of scientific evidence, I am positive that NCGS is a legitimate condition because, in general, symptoms appear in people who claim to have NCGS after eating gluten and disappear when they avoid it. Although the lack of a formal diagnosis can be frustrating, there’s an upside too. People who get tested for gluten intolerance have ruled out the possibility of having Celiac disease, giving them the freedom to choose a gluten-free diet or a gluten-filled one. However, being NCGS does not mean you’re completely gluten tolerant. Since the symptoms are so variable and differ from person to person, it’s best to seek a doctor’s advice before removing gluten completely from your diet. So if you suspect that you have NCGS, consider getting it checked by a health professional first. 

Yvie Cai is a freshman in the College of Human Ecology. She can be reached at yc884@cornell.edu.