When my doctor first suggested I try an elimination diet, I scoffed at the idea. It was autumn of 2014, and Id experienced months of extremely unpleasant digestive symptoms resulting in weight loss, exhaustion, and daily discomfort. My blood work was normal, and a physical exam revealed nothing unusual. My primary care physician suggested that my symptoms may be the result of a food allergy or non-celiac gluten sensitivity.
I visited a board-certified allergist, who conducted an allergy panel. Basically, this involved sticking tiny needles with allergens on them into a grid on my skin. If I were allergic to one of the tests, redness and swelling would raise a red flag. She also took blood for the Tissue Transglutaminase Antibodies (tTG-IgA) Testa common way to screen for celiac disease.
If youre not familiar with celiac disease, its a chronic autoimmune disorder affecting an estimated 1 out of 100 people worldwide, in which ingestion of gluten (a protein thats found in wheat, rye, barley, and a wheat-rye hybrid, triticale) causes damage to the small intestine.
My allergy panel showed serious pollen and dust allergies, but my blood work came back negative for celiac. The tTG-IgA test is not 100 percent accurate, and its still possible to have a gluten sensitivity without a celiac diagnosis. My physicians suggested I try eliminating various foods to see if that was in fact my problem. For the first phase of the elimination diet, I would cut out all foods containing gluten to see if there were any changes in my symptoms. If after three weeks I saw no change, Id cut out dairy products. After dairy, Id get rid of soy products. After soy would come nuts. If I didnt see any difference throughout the elimination diet process, my physician and I would move on to a different diagnostic process.
After three days without gluten, I felt improved beyond measure. I was no longer running to the bathroom after every meal, waking up with abdominal pain in the middle of the night, or struggling with my appetite. I didnt experience constant nausea. I even felt slightly more energetic. The final verdict, through a diagnosis of exclusion, was non-celiac gluten or wheat sensitivity (NCWS). The recommended (and indeed, only) treatment is to permanently avoid consuming gluten.
That was an outcome I didnt see coming, because I had consumed gluten products with gusto my entire life. I didnt realize quite how much gluten I ate until I had to cut it out entirely: No more bodega bagels, pasta dinners with friends, beer at happy hour, or late-night dollar slices of pizza. I discovered hidden gluten in things like soy sauce, vinegars, whole-grain tortilla chips, and meatballs. Wheat flour was a surprising staple in store-bought sauces and ready-to-cook rice mixes.
At first I was extremely skeptical of this new diagnosis. I didnt have an allergy to wheat the way someone may have an allergy to peanuts, causing an immediate reaction. Nor did I have celiac disease, meaning that my intestines werent necessarily harmed by the digestion of gluten. As it turns out, NCWS is a tricky condition. Researchers still arent entirely sure what causes it.
A number of recent studies involving blinded and placebo-controlled trials indicate that it is in fact possible to be wheat/gluten-sensitive without evidence of celiac disease, Armin Alaedini Ph.D., scientific director of the Celiac Disease Center at Columbia University Medical Center, tells SELF. The exact triggers of such sensitivity are not entirely clear yet, but both gluten and non-gluten proteins in wheat may play a role. The symptoms of celiac disease and NCWS can be similar. Gastrointestinal symptoms like abdominal pain, diarrhea, and bloating are common with both conditions. However, symptoms are reported to have a generally more rapid onset in NCWS. In addition, certain extra-intestinal symptoms, such as fatigue, cognitive difficulties, headache, and depressed mood seem to feature more prominently in NCWS. Our understanding of NCWS is rather limited, but it is clear that the condition is quite distinct from celiac disease.
In other words, NCWS existswe just dont know what causes it or how exactly to diagnose it. That might explain why some acquaintances were dismissive when I disclosed my new gluten-free diet to them.
It's difficult to estimate how many people suffer from non-celiac gluten sensitivity, since there are currently no definitive biomarkers for the condition, Alessio Fasano, M.D., a pediatric gastroenterologist and research scientist, director of the Center for Celiac Research and author of Gluten Freedom: The Nation's Leading Expert Offers the Essential Guide to a Healthy, Gluten-Free Lifestyle, tells SELF. Fasano says that NCWS may affect between 0.5 percent and 6 percent of the population.
In cases of celiac disease, consuming gluten leads to an immune response in the body that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine and promote nutrient absorption. Experts believe NCWS is caused by inflammation, but the exact process is unknown.
Fasano says many people with NCWS may not know they have it, because symptoms are not always apparent from birth. This is also the case for celiac disease, which can present as asymptomatic.
Youre born with a genetic predisposition to these immune reactions, but you develop them over time under very specific circumstances, Fasano says. It can happen at any time.
Following a gluten-free diet is what physicians recommend for anyone with NCWS. Still, gluten-free diets have developed a reputation as a fad. A recent study published in JAMA Internal Medicine revealed that the number of people following a gluten-free diet tripled between 2009 and 2014, but the number of people with celiac disease remains constant (the study does not include data on NCWS diagnoses). Researchers attribute the diets popularity to a public belief that the diet is healthier, something that is not necessarily true.
We know a gluten-free diet is lower in fiber, can be higher in sugar and processed foods, and lower in certain micronutrients, Amy Burkhart, M.D., R.D., tells SELF. For the average person, its not a healthy alternative. You can absolutely have a healthy, balanced gluten-free diet, but it requires making proper choices.
A diet low in fiber can lead to constipation, blood sugar fluctuations, weight gain, and high cholesterol. And Karen Ansel, R.D.N., previously told SELF that products made with enriched wheat flour often contain a substantial source of nutrients like iron and folic acid. By switching to gluten-free foods, which can be low in these nutrients [if they're] not enriched, a person may unknowingly be setting themselves up for vitamin and mineral deficiencies that could end up making them feel worse, Ansel said.
Alaedini notes, [Another] issue is that in trying to recreate the taste and texture of gluten-containing foods, the processed commercial gluten-free foods in the West often contain greater levels of fat and sugar than the original item, leading to concerns regarding increased risk of metabolic syndrome among people who consume these products regularly.
I live in New York City, where gluten-free options abound on every menu, and Im also lucky enough to afford specialty groceries. People living in rural areas or food deserts may not have access to the same variety of foodstuffs. Plus, the treatment burden of following a gluten-free diet is high. Burkhart explains: I dont think that anyone chooses to adhere to this diet and sticks to it. If they dont experience symptoms, they dont tend to stay on [the diet].
While I still love gluten-free pizza and some tolerable varieties of gluten-free beer, my current diet is much richer in whole foods than it was before my NCWS diagnosis. Im also much more likely to cook at homewhile New York restaurants are excellent at catering to food allergies and intolerances, Im more at ease eating food Ive prepared myself.
Some might wonder whether the switch to a diet rich in whole foods would be enough to make me feel better, for reasons having nothing to do with gluten. According to Dr. Burkhart, it could be possible if I were reacting to something else in the food besides gluten, "like a preservative, additive, coloring or other ingredient. In that case, the switch to a whole food diet would eliminate your exposure to the offender." But my body's reaction to gluten is clear: Ive been accidentally glutened four or five times in the past two and a half years, leading to, um, significant gastric distress.
Occasionally, friends will ask if Im still gluten-free. And my answer is that yeah, its inconvenient, but this is a lifelong change unless some other treatment for NCWS becomes available. And thats okay. I work closely with my doctor to make sure my diet is well-rounded. I read the nutrition labels on every supermarket product I come close to. I Google menus ahead of time to make sure a restaurant can accommodate me. Adhering to a strict diet is sometimes challenging, but it's nothing compared to the symptoms I struggled withand I promise you, the diet is much easier than it initially sounds.
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Can You Really Be Sensitive to Gluten and Not Have Celiac Disease? - SELF
