Do You Really Need to Avoid Gluten?
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Welcome back to Food Psych Weekly! Every week in this newsletter, I answer your questions about intuitive eating, Health At Every Size, disordered-eating recovery, and other anti-diet topics.
This week’s question is from a reader named Jamie, who writes:
I have just recently started listening to your podcast and I am realizing I most likely have an eating disorder. I thought I was doing it to be healthy, but I think I have IBS and was blaming it on gluten and dairy like you have talked about. My question is this: I have gone the past 10-plus years avoiding gluten [a protein found in wheat, rye, and barley] pretty religiously. Every now and then I try to eat it and it makes me very miserable. I become very bloated, extremely fatigued, and I almost feel like I have the flu without the cold-like symptoms. How do I get through this? Will this go away? It usually peaks at the third day and I give up and quit gluten again. This has reinforced my beliefs that I need to avoid it. More recently dairy has been doing this to me also. I haven’t been as religious about avoiding dairy as I have gluten but when I do avoid it, I do feel better. Until I don’t... I’m thinking that stress is what is causing these symptoms?! I don’t know. I’m a little confused about it. This train of thought is so different from what I am used to. I hope I can introduce gluten back into my system without having the negative symptoms I have been experiencing. I heard on one of your podcasts that some people experience a nocebo effect and I am wondering if that is what I am experiencing… except that sometimes I get “accidentally glutened” and still have the same reaction even though I didn’t know I was consuming gluten. This leads me to believe my body is experiencing an actual reaction. Please help! Thanks
Thanks for this great question, Jamie, and before I answer, just my standard disclaimer:
These answers are for informational and educational purposes only, aren’t a substitute for individual medical or mental health advice, and don’t constitute a provider-patient relationship.
First, I want to send you so much compassion for what you’re going through. From my own past experience with disordered eating and food avoidance (and ongoing experience of IBS, or irritable bowel syndrome), I know how uncomfortable and confusing it can be to untangle the reasons for your symptoms when you have so many things going on.
It sounds like you’re realizing your disordered eating is likely playing a role here, and that’s a huge step. In this culture (aka diet culture) that frames every ache, pain, or other symptom as food’s fault, it takes a lot to recognize that *what* you eat is often a lot less important than *how* you’re relating to food. If you’re restricting, rebound-eating/bingeing, using compensatory behaviors, and/or treating certain foods as “off limits,” you’re almost certainly going to have physical symptoms of some kind, because disordered eating does a number on your GI tract and many other systems in the body. And those symptoms tend to be worse in the presence of foods you’re particularly anxious about.
That’s the “nocebo” effect that you mentioned. For folks who aren’t already familiar with that term, the nocebo effect is a phenomenon where merely thinking that something (such as gluten) is making you sick causes actual symptoms. It’s the opposite of the placebo effect, where believing that the placebo is making you better reduces your symptoms.
In general, Jamie, your symptoms with gluten and dairy sound like they could well be due in large part to the nocebo effect. Stress and anxiety about food (and about other things) can definitely trigger physical responses like bloating, fatigue, and feeling run-down—and diet culture, in its modern guise as the Wellness Diet, certainly creates plenty of anxiety around gluten and dairy. The fact that you still have symptoms when you get “accidentally glutened” is definitely worth investigating, but even that doesn’t necessarily mean you’re reacting to the gluten itself. Think about the situations in which you’ve accidentally consumed gluten: Most likely they’re times when you’ve eaten food that you didn’t prepare or control, right? And how do you feel when you aren’t in control of what’s in your food? Many people with disordered eating feel anxious in those situations—and that added layer of stress can trigger physical symptoms.
Similarly, when people with disordered eating eat at restaurants or friends’ houses, they tend to eat differently than they usually do at home—either eating more food, less food, or different kinds and combinations of food. Changes in routine (and/or anxiety about those changes in routine) are common triggers for IBS, regardless of what foods you’re actually eating. In other words, it’s not the food *itself* causing symptoms, but simply the fact that you’re eating differently all of a sudden.
So you might try experimenting with ways to reduce anxiety and disordered eating when you’re not in charge of the food preparation, and see if that helps reduce your symptoms when you do unintentionally eat gluten. (I’ve been mentioning this a lot lately, but if you’re not already working with a treatment team, you can find some of my recommended providers here.)
That all being said, there is still a chance that gluten could be causing symptoms for you. (Dairy sounds a lot less likely to be a true source of symptoms, judging by what you wrote, so I’m focusing here on gluten—but see the * below for a thought on a simple way to test your response to dairy.) In some cases, people with disordered eating can develop temporary sensitivities to particular foods, as Marci Evans and I discussed in episode 175 of Food Psych. But in a very small percentage of cases there can be another, more serious reason you might experience symptoms in response to eating gluten—namely, celiac disease. You didn’t mention whether you’ve ever been screened for celiac disease, but I’d definitely recommend getting tested. Celiac disease is an autoimmune condition characterized by an inability to digest gluten, affecting up to 1 percent of the population (about three-quarters of a percent in the U.S.). A medical doctor can give you a blood test for it, where they will likely look for both the celiac disease gene and anti-gluten antibodies. If you don’t have either of these markers in your blood, then it’s highly unlikely gluten is actually causing your symptoms. (In my first book, Anti-Diet, I discuss the compelling evidence that so-called non-celiac gluten sensitivity probably isn’t related to gluten at all.) But if you do have celiac disease, getting a diagnosis is essential for your well-being.
The catch with the antibody test for celiac is that you have to be eating gluten consistently for several months before your bloodwork, otherwise it can result in false negatives. I’d be curious to know what comes up for you when you think about eating gluten consistently in order to get tested. Do you get so anxious that it feels impossible? Do you just want to avoid it so that you can keep avoiding gluten? Those responses could potentially be a clue that your seeming reactions to gluten are driven largely by your negative beliefs about it—the power of the nocebo effect. Or maybe instead, you feel ready to steel yourself and start eating gluten again in the name of science, and able to sit with any uncomfortable symptoms that may arise. If so, that could be a sign that there’s less of a nocebo effect going on than you may have thought. Or perhaps you feel ambivalent, with part of you wanting to avoid the test and part of you feeling resolved to try it despite your apprehension. If so, that’s a good indication that you’re human :) It might help to reflect and mull it over for a while, and see if your feelings shift and change as time goes on.
Thanks again, Jamie, for that great question, and I hope this helps you sort through some of your concerns about gluten and dairy.
* It sounds like the nocebo effect is probably a leading factor in your relationship with dairy, but here’s a simple way to test it: Taking over-the-counter lactase enzymes when eating dairy would most likely help with any lactose intolerance you may have, which is common among adults. If you take the enzymes consistently as directed and don’t see any improvement in symptoms, then you likely don’t have lactose intolerance.
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Podcast Archives
In Episode 198 of Food Psych, eating-disorders psychologist Lauren Muhlheim joined me to discuss how we can model a peaceful relationship with food for the kids in our lives, the problem with “childhood obesity” interventions, how some eating-disorder-treatment methods are being co-opted for weight loss, the rise of orthorexia, weight bias in medicine and the eating-disorders field, and so much more.
Plus, I answered a listener question about the Biggest Loser reboot, and shared an early look at my book, Anti-Diet: Reclaim Your Time, Money, Well-Being, and Happiness Through Intuitive Eating.
Check it out right here, and be sure to subscribe to the pod so that you get weekly reposts of fan-favorite episodes while we’re on hiatus, and new episodes once we return.
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Here’s to ending unnecessary food avoidance,
Christy