Why Your Self-Diagnosis of a Gluten Sensitivity Is Probably Wrong

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I have a fear of needles. Before my surgery, I went for an MRI and the technician told me she would be using contrast dye. Great. Because even the sight of needles freaks me out, I looked away as she inserted the IV. Although I could feel the IV in my arm the entire time I was in the tube, I managed to never once glance at it, as I knew that would send me into a panic.

As soon as the scan ended, I anxiously asked the technician to please hurry and take out the IV. She looked at me confused, then gently explained that I did not have an IV. She had given me a shot, not an IV, and the needle was long gone before the test even started. The sensation of an IV in my arm during the MRI was concocted by my own imagination based on my belief that such an IV existed.

Our susceptibility to the power of suggestion is not a source of embarrassment or shame. Although I am no expert in the field of psychology, my life experience suggests to me that virtually all (if not literally all) of us experience placebo/nocebo effects in one way or another. Seems to me it is just part of what makes us human.

This element of our nature is a major confounding factor with elimination diets and self-diagnoses of food sensitivities. Your perceived gluten sensitivity is probably off base, just like the sensation I felt in my arm from a non-existent IV, because of your expectations.

Before I continue, I want to interject that despite the Business Insider article that came out recently entitled “Researchers Who Provided Key Evidence for Gluten Sensitivity Have Now Thoroughly Shown That It Doesn’t Exist,” gluten sensitivities do seem to exist. One of our colleagues, for example, was having such terrible migraines that her medical team wondered if she might have a brain tumor, but she came to find out that a sensitivity to gluten was causing the attacks. Since going gluten-free seven years ago, her migraines have completely disappeared.

So while the article’s title is an overstatement, the research study behind it hints at an important point: Gluten sensitivities are much more rare than today’s culture would lead us to believe.

Patients of mine have blamed their symptoms on gluten. After they made an effort to eliminate gluten, their symptoms resolved. Here’s the thing though: They were still eating gluten; they just did not realize it. For example, some patients correctly knew that wheat contains gluten, yet they continued to consume certain wheat-free grains and products not realizing they still contained gluten.

A very common and specific example is Ezekiel bread. Because of the bread’s marketing, some consumers associate the bread with health. Because of misinformation (According to research reported in the October 2013 issue of the Tufts Health and Nutrition Newsletter, 35% of people who buy gluten-free products do so because they believe them to be “generally healthier” than their gluten-containing counterparts, while 27% believe going gluten-free will help them lose weight. Both of these generalizations are incorrect.), they also associate health with gluten-free. Therefore, by the transitive property, they assume Ezekiel bread is gluten-free. But it isn’t; Ezekiel bread is loaded with gluten. The first ingredient is wheat, the second ingredient is barley, and the manufacturer even adds extra gluten, presumably for a protein boost or for texture reasons.

It seems, therefore, that these patients felt better because they expected to feel better or for some other reason, but not because of gluten itself.

If you are concerned that gluten might be problematic for you, make an appointment to see your doctor to discuss your concerns and legitimate methods of testing. In the meantime, continue consuming gluten, as eliminating gluten prematurely can make diagnosing a real gluten issue more difficult.

If it turns out your self-diagnosis was wrong, don’t feel bad. Remember, we all imagine that proverbial needle sometimes.

2 thoughts on “Why Your Self-Diagnosis of a Gluten Sensitivity Is Probably Wrong

  1. This is a terrific article, Jonah! I love your example of the MRI and the needle you thought was in your arm. I know just what you mean. I have a particular pet peeve about the gluten free “health” movement. We just need to have a “demon” to point a finger at, and gluten is just the current one. Stay tuned, this one will pass, to be replaced with a new one. People just don’t want to accept the fact that diet and nutrition are complex, and that science changes as we learn new things. There’s no “silver bullet”.

    • Thank you, Ellen, that means a lot coming from you. From trivial examples like Bill Buckner to atrocities like the Holocaust, human history is riddled with examples of people looking for scapegoats. The world of nutrition is no different.

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