It’s Q&A time! You can ask your own question here for a chance to have it answered in an upcoming edition.
My answer to the first question is available to all subscribers (about autoimmune diets and celiac disease), and there’s a bonus one for paid subscribers (about going gluten-free for an autoimmune thyroid condition).
I was just searching through your website. My daughter has an eating disorder, and your books were mentioned positively in a discussion. I came across your blog post about autoimmune diets. You speak very generically about autoimmune diseases/diets and don’t single any out specifically [ed. note: this piece actually talks specifically about the “autoimmune protocol” diet]. We have celiac disease in our family. Are you saying that you don’t believe a gluten-free diet for someone with celiac is medically necessary?
FYI: my answers here are for educational and informational purposes only, aren’t a substitute for medical or mental-health advice, and don’t constitute a provider-patient relationship.
A gluten-free diet for someone with celiac disease definitely IS medically necessary. Celiac is an autoimmune disease triggered by the consumption of gluten—a protein found in wheat, barley, rye, and related grains—and avoiding gluten is important for managing symptoms and preventing damage to the small intestine.
Technically I suppose a gluten-free diet for celiac disease could be called an “autoimmune diet,” though that’s not the diet I was referring to in the blog post—that piece was about a specific diet called the “autoimmune protocol,” which excludes many other foods in addition to gluten and is marketed to people with all kinds of other autoimmune diseases (such as inflammatory bowel disease, Hashimoto’s thyroiditis, lupus, and more). But I probably should have mentioned the necessity of a gluten-free diet for celiac disease in the piece, as I have in my other reporting about this issue (such as the Q&As in these two episodes of Food Psych). I’ve now updated the piece to make sure no one misreads it to say that I’m against going gluten-free for celiac disease, which I’m certainly not!
While we’re on the subject, though, I think it’s also important to acknowledge that for people without celiac disease, going gluten-free most likely is not medically necessary—and it could in fact be harmful, both nutritionally and psychologically. Celiac disease is a genetic disorder affecting around 1 percent of the population (though only about 0.7 percent are diagnosed using the “gold standard” intestinal biopsy, and diagnosis can be a multi-step process, as we’ll discuss in my answer to the second question). Among the other 99 percent, many people believe they have an intolerance to gluten—officially called “non-celiac gluten sensitivity” in the scientific literature. But that idea is highly problematic, as I reported in my first book, Anti-Diet:
Non-celiac gluten sensitivity (NCGS) is often misdiagnosed or improperly self-diagnosed. No biological marker identifies the condition, which means it cannot be diagnosed with a blood test or a stool sample: there’s no way to tell from the outside whether or not someone has it, so any diagnosis of NCGS is based solely on people’s self-reported symptoms in response to gluten, combined with tests to rule out celiac disease and wheat allergy. What’s more, in many cases people’s symptoms don’t resolve on a gluten-free diet, and any genuine reaction to gluten-containing products may not be related to gluten at all.
To date, only a few randomized, controlled trials (RCTs, the most reliable form of study) have tested whether gluten is really the cause of people’s symptoms in NCGS. The best-designed of these studies, published in 2013, showed that when it comes to gluten, there’s a strong “nocebo effect”—a phenomenon where merely thinking that something (such as gluten) is making you sick causes actual symptoms. (It’s the opposite of a placebo effect, where believing that the placebo is making you better reduces your symptoms.)
In the 2013 study, people weren’t told whether they were getting gluten or not. But many of them thought they were getting gluten and expected to feel bad when eating it, so they did—even those who had in fact been given gluten-free food. It didn’t matter what they were actually eating. “It was just such a strong expectation that they were going to be receiving gluten at some point during their trial,” says Jessica Biesiekierski, the lead author of the study. “I think they had built up such a sense of anxiety and expectation toward when they would feel those symptoms that they [attributed] to gluten.”
Part of the difficulty with research like this, says Biesiekierski, is that there’s no way to find people to study in NCGS trials who lack strong beliefs about gluten. The only way that researchers can get people into these studies is by finding folks who self-identify as having the condition—a confounding factor, because if you’ve already self-diagnosed with NCGS, you’re more likely to be vulnerable to the nocebo effect with gluten.
I asked Biesiekierski whether, in light of her research, she thinks non-celiac gluten sensitivity is a viable diagnosis, or whether it even really exists. “I don’t think that it exists,” she says. “And if it does, it’s likely to affect only a very, very small number of people.” That’s not to say that the people who believe they have NCGS don’t legitimately have symptoms; they absolutely do. It’s just that gluten doesn’t seem to be the cause of those symptoms, whereas their beliefs about gluten do seem to play a role. “If somebody so strongly believes that something is going to be responsible for triggering their symptoms, then just that thought is enough sometimes,” Biesiekierski says.
Some wellness practitioners claim to offer tests that can diagnose gluten sensitivity and other “food intolerances.” But these tests—which include hair analysis, applied kinesiology, and blood tests based on IgG antibodies that yield long lists of foods to avoid—lack scientific validity. The same is true for at-home stool tests. As I’ve said before, their results are no better at predicting food sensitivities than chance, so statistically you might be better off asking a Magic 8 Ball whether you were intolerant to gluten—at least it wouldn’t charge you hundreds of dollars out of pocket.
It’s also worth noting that even medically necessary food restrictions can put people at higher risk of disordered eating. A 2021 systematic review representing the best available research (which does have limitations) found that about 9 percent of people with celiac disease also have eating disorders—significantly higher than the prevalence in the general population. Having to avoid certain foods can lead to a preoccupation with one’s diet, which can predispose some people to disordered eating.
That’s not a reason to avoid going gluten-free for celiac disease, of course (see above re: medically necessary). But it’s important to keep in mind that these kinds of conditions can make it more challenging to have a peaceful relationship with food—so if you don’t have a medical reason for avoiding certain foods, in my view it’s simply not worth the risk.
Hi Christy, thank you for everything you do! Both of your podcasts have changed my life and helped me immensely with ditching diet culture and wellness culture, but I have one question that haunts me. I was diagnosed with Hashimoto’s and hypothyroidism two years ago. My functional doctor is great and has helped me get on the right dose of medication, but she has told me I need to be gluten-free like a celiac in a bid to control my autoantibodies and the Hashimoto’s itself. I was told I have celiac genes, but my celiac test was negative two years ago. Is it true that I must be gluten-free? I really try to eat gluten-free, but I feel it has contributed to a fractured relationship with food and may have exacerbated other health problems. I am now also insulin-resistant and pre-diabetic, and she has asked me to take [an herbal supplement] rather than prescribing metformin. My symptoms are getting worse as well. I hope you can help provide some clarity.
