Gluten Intolerance . . . Is It All In Your Head?

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As a co-founder of the Los Angeles Bread Bakers I go to a lot of public events where someone will walk up to me and announce that they are gluten intolerant. Their stories of getting off bread have the flavor of a religious conversion. My defensive reaction (I help run a bread club, after all) smacks of religious zealotry.

We know with a great deal of certainty that gluten intolerance in the form of celiac disease effects slightly less than one percent of the population. That actually makes it one of the most common allergies disorders related to food. But a much larger percentage of people self-diagnose as gluten intolerant who do not have celiac disease. Peter Gibson, a professor of gastroenterology at Monash University and director of the GI Unit at The Alfred Hospital in Melbourne, kicked the gluten intolerance self-diagnosis trend into overdrive with a 2011 study that showed a large percentage of the population (those without celiac disease) as having a problem with gluten.

Gibson decided to take another look at gluten intolerance and construct a much more rigorous study in which all the meals were provided to the subjects and all urine and feces were analyzed. An article at Real Clear Science summarizes the results:

Analyzing the data, Gibson found that each treatment diet, whether it included gluten or not, prompted subjects to report a worsening of gastrointestinal symptoms to similar degrees. Reported pain, bloating, nausea, and gas all increased over the baseline low-FODMAP diet. Even in the second experiment, when the placebo diet was identical to the baseline diet, subjects reported a worsening of symptoms! The data clearly indicated that a nocebo effect, the same reaction that prompts some people to get sick from wind turbines and wireless internet, was at work here. Patients reported gastrointestinal distress without any apparent physical cause. Gluten wasn’t the culprit; the cause was likely psychological. Participants expected the diets to make them sick, and so they did. The finding led Gibson to the opposite conclusion of his 2011 research:

“In contrast to our first study… we could find absolutely no specific response to gluten.”

Nocebos, incidentally are placebos with a negative effect. If I tell you you are going to get sick there’s a good chance you will. All human beings are highly suggestible. How powerful are placebos/nocebos? A recent study showed that placebos/nocebos work even if you tell research subjects they are taking a placebo/nocebo.

What’s important to note about the nocebo effect is that it results in real physical ailments. Ioan P. Culianu, professor of divinity at the University of Chicago used to quip, when asked about the subject matter of his research (Renaissance magic and the occult), “It’s all in your head.” And then he would wink. His point? We don’t take seriously enough the life of the mind. We dismiss the placebo/nocebo effect as, “just being psychological.” And because it’s “psychological” it’s not “real.” We forget that what goes on in our heads has real world implications.

I think, many people are having a spiritual crisis as a reaction to their unhappiness and dissatisfaction with the modern world and the industrial food system. This system is making us sick both physically and spiritually. This crisis is manifesting as non-celiac gluten intolerance and other real health problems. The placebo/nocebo effect was known to the Renaissance magicians that Culianu studied, such as Giordano Bruno. It’s known to all shamans and spiritual healers. It should be taken seriously.

Manipulation of feelings and emotions in realm of our minds (done everyday through advertising, by the way) can  be used for both good and bad. Bruno even wrote a treatise on the subject, De vinculis in genere (On bonding in general). But Bruno and other philosophers of his time took metaphysical matters seriously. In our modern world we value only the material, which is how our lack of awareness of the nocebo effect can get us into trouble. The only people truly aware of the power of the placebo/nocebo effect in Western culture are advertisers and they are largely black magicians. Advertisers harness the nocebo effect of our gluten fears, reinforce those feelings and then use them to sell us products we don’t need.

The nocebo effect raises some thorny questions. If I open a toxic waste dump that creates a psychological feeling of unease that in turn causes people to get sick am I a “psychological polluter?” Am I liable even if I don’t leak any toxic waste? Again, the illnesses are real and the people getting them aren’t crazy.

Back to gluten, there may still be a gastrointestinal problem with wheat, Gibson is careful to note. But he doesn’t think it’s gluten. Ever in defensive mode as a bread enthusiast, I have an unproven theory that the way we make bread may be contributing to the problem. Perhaps the pre-digestive power of sourdough cultures, ancient wheats and baking bread longer may have an effect on how our bodies process bread. But there’s no research yet to back up my idea.

As to the power of the mind, like sourdough it’s also about culture, but culture in the non-physical sense. On that note, we’ve got a lot of work to do. Thankfully we can harness the placebo effect to do a lot of good. That will have to be the subject of another post.

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26 Comments

  1. Oh man…how I love wheat in all of it’s forms. I have, however, over the last several months, felt pretty crappy. After several visits to my Applied Kinesiologist, and much hemming and hawing over gluten, he finally said that I have to stop eating it completely for a while because my body isn’t processing it correctly. This isn’t an allergy or an intolerance…it’s essentially a build up of gluten and several other factors that are adding to my feeling-crappy-every-day-self. So, no gluten for me for a while until I can process it out and get my kidneys functioning properly again. Once this process is complete, I will begin playing with heritage grains. So, this piece (as well as the others you have written about ancient grains), makes me very happy. Onward!

  2. My friend who went to a kinesiologist for intestinal problems ended up have stage 3 colorectal cancer. So, that comment gave me the heebie jeebies.

    For three weeks I refused to buy bread at full price–$3.98 for the whole wheat I wanted. I had plenty in the freezer, but I cannot get to the freezer. I also had the money to buy bread. However, I just refused to pay full price when I had it for $1 in the freezer.

    I felt so much better with no lethargy or gastrointestinal distress. The allergist said the test showed I had no celiac disease, gluten allergy or intolerance. Then, he said, “But, the tests can be wrong!” Just shoot me now.

    Everything I have ever said I did not like from the time I was a small child has been something that I now find is something to which I am allergic. oooh, bad sentence. When I was a baby refusing to open my mouth, how suggestible was I?

    For 20 years, I have been saying to friends that I think I am allergic to beef. I am!

    I am not refuting the research, just saying it has limits.

    • This is, perhaps, grist for another post, but I wan’t to be clear that we should not ever blame victims for disease. First off, there are a lot of carcinogens in our modern world. As to the placebo/nocebo effect, there’s a book by Barbara Ehrenreich, Bright-sided: How Positive Thinking is Undermining America that I don’t like (I think she is overly dismissive of positive thinking). That said, I do like the chapter on breast cancer and her takedown of how positive thinking is used to blame breast cancer patients. She makes a lot of good, fair points.

      The thing about the placebo/nocebo effect is that we all, myself included, like to think that we aren’t suggestible. We are. Psychological/spiritual issues do matter and I think we need to get out of an over-materialist mindset that doesn’t appreciate the power of the mind, prayer, art etc. But it’s a balance–we also need to acknowledge the physical world and the very real danger of toxins in our environment.

  3. I would love to hear more about your thoughts on how we make our bread. I have had similar thoughts for some time and have been working on a long term project for the Nutritional Therapy program I am taking. I’ve been using wild fermentation for my sours and rotating the grains I use.

    • In short:
      1. Stone grind–do not sift. I bought my own mill so that I would have whole wheat that uses the entire kernel. The whole wheat you buy in the store has had some of the bran sifted out and nutrition added back in the form a vitamins. If you’re in LA there’s also a new mill–Grist & Toll that does not sift their wheat.
      2. Use a starter rather than commercial yeast. The fermentation of a starter harnesses the power of natural yeast and lactic acid producing bacteria. This pre-digests the gluten and other substances in wheat.
      3. Seek out older forms of wheat.
      4. Bake until the center of the loaf is thoroughly done and no longer gummy.
      That’s the theory, at least. These ideas are being tested but, as I said in the post, there’s no definitive studies to back any of this up.

      Interestingly, of course, there’s the placebo effect to take into account. As Bruno famously said, “If it be not true at least it is well invented.” I could make an argument that good tasting, wholesome looking breads might just make us feel better psychologically and, as a result, make us feel better physically.

  4. I very much enjoyed this. With respect to your “unproven theory,” you might be interested in some the work going on at Washington State University’s bread lab. From a recent article in Mother Jones,
    “According to Jones and McDowell, low-quality industrial white flours and fast-rising commercial yeasts, along with additives like vital wheat gluten—a wheat product added to give bread structure despite superfast rises—have generated a backlash against bread in the form of the “gluten-free” craze. While people with celiac disease genuinely can’t process the gluten in wheat, they argue, most people actually can. The problem is that most industrial bakeries only allow bread to rise for a matter of minutes—not nearly long enough to let the yeast and bacteria digest all the gluten in the flour, let alone the extra dose in the additives. The result can lead to all kinds of problems in our gut.” http://www.motherjones.com/tom-philpott/2014/02/toms-kitchen-100-whole-wheat-bread-doesnt-suck-and-pretty-easy

    • Thanks for the link–Steve Jones is in the forefront of this research. We were thinking of bringing him down to LA to do a lecture.

    • I don’t think wheat is evil. As a Christian, Christ used a loaf of bread in the last supper. It’s not inherently bad.

      However, I think what we’ve done to it is. The problem is once the damage is done to our bodies, it can’t be undone. Once you have an autoimmune disease, you can control it, but you can’t reverse the genetic switch that got flicked.

      I am doing everything I can to not have this gene switched in my kids. I make them bread with a sourdough starter. I try and use ancient wheats, I soak them an grind them. (obviously this is very time consuming)

      I think it can be halted for a younger generation, but for some of us -this is our new reality.

  5. in 2009 I was diagnosed with Hashimoto’s disease – auto-immune thyroiditis. The dr. gave me a whole list of the many things that can cause this and (as a thyroid specialist) told me what he felt would be my ultimate dosage of thyroid meds. Considered the list, which included things like amalgam fillings in my teeth, past trauma as a child, gluten intolerance, and more. Decided that I wasn’t going to go have all my amalgams removed (its happening anyway as I get older and they fail), no time machine to go back to the days of my youth, but I could go gluten free for a year and see if it made a difference. Within months my bloodwork was showing a difference and even the dr. was amazed! A reduction of the inflammation that I was getting in joints developing osteoarthritis, my eyebrows grew back (shortened eyebrows are a sign of an underactive thyroid), my hair began to grow back (losing hair is a symptom of underactive thyroid). About 6 months into this, I was jonesing for pizza and sandwiches, when we went to a party.

    Now, you have to understand my thinking here – from the dr’s diagnosis, I could continue to eat wheat and other gluten products and just take this recommended large dose of meds, so what difference did it really make if I did or did not eat wheat? This was an experiment that could be discontinued at any time with just an increase in my prescription, right?!

    At this party I had a piece of delicious, luscious, full of all the commercial crap in the world, Chocolate iced cake!

    and three days later, in the shower, my hands were filled with hair falling from my head! Not an exageration! at least 10x the normal shed! and two days later, back to normal.

    Now, I’m not saying it is GLUTEN itself that is the problem, nor am I saying it is wheat. It could be the modern wheat vs the original. it could be the way modern food products are treated. as a bread baker myself, it could also be the way wheat is processed and stored – know that some nasty stuff is used to protect the flour from insects and critters in storage and transit.

    I do know my hair is thicker, a long persistent nail fungus is clearing, my eyebrows are almost normal, and my thyroid med dosage is about 2/3′s of what the Dr thought would be my maintenance dose!

    So whether or not this is actual gluten intolerance, an aversion to modern agriculture, some other environmental reaction, I don’t care. Keeping away from wheat and other gluten containing foods is helping me, and so I shall continue to eat gluten free.

  6. As an 8 year old with pretty extreme environmental allergies (pollen, etc.) I was pretty drugged up all spring and summer, until my mom said enough is enough and we visited a naturopath. I’ll be totally honest, my degree in biological sciences makes me pretty weary of the poor quality evidence provided by a lot of naturopathic studies, but adult me also has to weigh my childhood experiences. At the ripe old age of 8 my mom took me off gluten and dairy for a whole year. It was the worst. I hated it. I was convinced it wouldn’t help me. Then spring rolled around and guess what, no allergies. Not a reduction in allergies, NO allergies. I went to summer camp on a FARM, where I was allergic to hay and animals with fur before, and nothing after. Unfortunately, after that my dad fell ill and my mom didn’t have time to keep me on the diet so stringently. Over the years I have eaten more and more gluten and my allergies have slowly come back more and more. Second year university I went cold turkey on the gluten and BOOM, no more allergies after 6 months. I’ve done a bunch of literature searches and talked to my doctor, and have not found a sufficient explanation. I’m not saying gluten “intolerance” is the answer for me, but I know the protein and I don’t mix well, and I know the other answers out there aren’t a fit. I’m just hoping for more research and better answers at this point!

  7. I wonder if some of the problem could be the level of phytic acid in wheat. The methods that you recommend are known to lower the phytic acid, which is thought to be a problem for human digestion and health.

    I haven’t studied all the evidence for this but I’m curious if it might be a factor in all of this.

  8. I’d be interested in seeing a post by you guys going further in depth into how we might be able to heal ourselves (both individually and as a society). I, among many others, have been noticing physical responses to certain foods I eat, and it being a psychological response is a very interesting idea. I’ve been loosely Paleo for about a year and love it, but still notice certain reactions. I know you guys don’t have all the solutions, but I’d love to hear some ideas on how I might be able to better interact with my food.

  9. It’s all in your head until you get diagnosed with Celiac and Hashimotos.

    And I’ve probably had it for 20 years with no symptoms, so it was totally just in my head then.

  10. Amen to this (said the agnostic…) I said exactly all of this to my husband and then Mom after hearing about this study, although much less eloquently. I would only add that often people who make a radical change to their diet change several habits at the same time, and end up eating far more fruits, veggies, and unprocessed foods as a whole. That makes you feel better, no matter what the “problem” was in the first place.
    I also marvel at the power of the mind to make things real. My brother has schizophrenia, and it is incredible how real sensations are to him that he knows aren’t really happening.

  11. Thank you for that well reasoned and surprisingly dipassionate post.

    The psychological suggestion angle’s brilliant

    I’ve been trying to eliminate processed flour, which in India is mostly in store bought bread, pastries, etc.

  12. The thing the studies/anecdotes don’t always take into account is that once you start eliminating things from your diet you start thinking generally about what you’re eating. And maybe not eating gluten means you’re also reducing the things you used to eat with it- sugar in the jam (jelly) on top of the bread, or in the doughnut, perhaps?

    I’m not denying anybody’s personal experiences, just a thought…

  13. Interesting; thanks for this. I don’t see myself as having problems with gluten, just that it made up too much of my diet. Balancing, with more fruit and vegetables, less wheat product (as in not every meal), settled me down in a few days and I was immediately thinner too. As far as the positive thinking comment, when I had cancer twenty-five or so years back (stage IV melanoma – amazing, right, that I’m here typing this?), I had people ask what I’d done to get it, what had stressed me out so much (along with a few asking if I was contagious) and telling me I needed to be more positive. I usually told them I’d been stressed by my Irish genes. Too few understood, unfortunately. Those asking if I was contagious, I’d put a hand on their shoulders, lean in close to their faces and say, “I don’t think so.”

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  15. For me, the way to tell if it’s “all in your head” is simple. If you accidentally eat gluten and get sick, it’s not in your head. You ate something you didn’t know had gluten in it and later, when you felt terrible, had to investigate to figure out what it was that did you in. Gluten intolerance is not fake. Maybe people who have never had any real debilitating symptoms have suddenly decided they’re intolerant to it because it’s a “fad” all of a sudden but the condition is very real and incredibly misunderstood and under-diagnosed.

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  17. “We know with a great deal of certainty that gluten intolerance in the form of celiac disease effects slightly less than one percent of the population. That actually makes it one of the most common allergies.”

    If you are going to say something with “certainty”, please be aware that Celiac disease is an autoimmune disease.

    It is NOT an allergy.

    This is a huge misconception.

    Thank you.

    • Bella, Thanks for the correction. I have amended the original post. It is indeed important to distinguish between an allergy and an autoimmune response.

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