Reporter's Notebook

Why Go Gluten-Free?
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Readers discuss the health craze and share their own experiences with giving up gluten. Join them via

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When Gluten-Free Is a Gut Feeling

Another reader, Meg, shares her non-diagnosed but very real experience as someone “who is non-celiac but has benefited from a gluten-free diet”:

I think we enjoy sharing our stories because it is so incredulous to even us that an innocent cereal grain we enjoyed our whole lives could be the root of so much trouble. We wonder how we ourselves could be unobjectionably afflicted by a gluten intolerance at the same time the “gluten-free movement” is gaining so much traction. Yet the evidence is there. We don’t have answers, but we know it to be true.

For me, it started with a series of gradual and strange ailments at age 34: pancreatitis; shooting pains in my hands and feet and other joint pain; and finally, trigeminal neuralgia. This last one was the worst pain imaginable, like a searing frozen knife jabbing my left temple, cheekbone, teeth, and ear.

I sought doctors for each issue and each validated my pain [CB note: Here’s a contrasting series of reader stories], but they could find no underlying issue. It was a nightmare for me, and confusing and scary for my husband. Before all of this, I didn’t even have a primary care doctor. Within months, I had a half-dozen specialists and a clinical therapist.

The breakthrough came when I googled all of my symptoms together in one search. What resulted, a dozen times over, was not celiac disease (which hadn’t yet occurred to me) but MS. This was actually a relief—a matter-of-fact explanation for all of my symptoms.

The vast majority of people who avoid gluten don’t have celiac disease or even a gluten sensitivity, but as reader Rachel can attest, there’s a big upside to the proliferation of all the GF products and menus fueled by the fad (even as Hamblin noted the downsides):

I found out 10 years ago this month that I had Celiac. I was having horrible stomach pain, reflux, ulcers, etc, and at 19 I had zero quality of life. My biopsy came back positive for Celiac but my blood-work was negative, so my doctors weren’t sure at the time how to diagnose me.

Going gluten-free 10 years ago was one of the most overwhelming and terrifying things I had ever experienced. My doctor flat told me I could continue to eat gluten but I would most likely develop colon cancer by the time I was 40.

Reader Dean says hello@:

You asked, so here’s my gluten-free story (safe for Celiacs to read):

I’m not a Celiac, but I do have Crohn’s disease, an inflammatory autoimmune disorder which often causes similar symptoms in the digestive tract. When I was first diagnosed with Crohn’s, a course of steroids followed by immunosuppressive drugs was enough to keep me in relatively good health.

Slowly, though, my symptoms returned. After two years, I was again underweight and anemic (a six-foot-tall male in my twenties, I weighed about 130 pounds at my lightest), with chronic, debilitating stomach pains and other symptoms which made my life very hard.

Jim Hamblin has a new piece up for Celiac-Disease Awareness Month. Money quote:

[Avoiding gluten] has not been shown (in placebo-controlled studies) to benefit people who do not have the disease. Celiac disease is known to affect about one percent of people. Yet in a global survey of 30,000 people last year, fully 21 percent said that “gluten free” was a “very important” characteristic in their food choices. Among Millennials, the number is closer to one in three. The tendency to “avoid gluten” persists across socioeconomic strata, in households earning more than $75,000 just the same as those earning less than $30,000, and almost evenly among educational attainment. The most common justification for doing so: “no reason.”

He goes on to detail the downsides of gluten-free replica products. A reader responds with a solid bit of advice:

As someone who has had a lifelong gluten allergy (and gave it to two of my three kids), the increased “trendiness” is a mixed bag. Yes, it mean more choices, but it also means that people think my disease is just a trendy lifestyle choice and not a real thing. My general recommendation is not to use too many wheat substitutes. Instead of a gluten-free sandwich, have a salad or meat and veg. Instead of beer, have wine or hard liquor.

One of my part-time jobs right out of college, while interning and waiting tables, was doing research for a book that my roommate and his celiac-suffering business partner were putting together to help people travel and dine out gluten free. This was late 2004, and I had never heard of gluten, nor had any peers I talked to about the research gig. So over the past decade it’s been remarkable to see how rapidly and widespread “gluten free” has become. Now my best friend is GF, for dermatological reasons, as is my mother, who swears that her GF diet has snuffed out some mild health problems—and she’s been a nurse for 40 years, so she’s very science- and health-oriented. Here’s another gluten-free reader who works in the sciences:

I work in human research. Getting people to keep accurate records of what they eat, or to maintain a specific diet for a long enough time without keeping them in a lab environment 24/7 is incredibly difficult if not impossible. I am gluten-free due to promising science on Hashimoto’s thyroiditis (I am not celiac). If you have a problem linked to inflammation, it makes sense to see if going gluten-free can reduce that inflammation.