What if your gluten intolerance is all in your head

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For many sufferers, gluten intolerance may originate in the mind, not the body. But that's nothing to be ashamed of, says a philosopher

While living in China from 2003 to 2005, I often served as the designated translator for fellow expatriates. Whenever we ate out, this involved asking our server which menu items contained monosodium glutamate (MSG). Invariably I was told that almost everything is made with weijing ("flavour essence"), including, on one occasion, the roast peanut appetiser my MSG-sensitive friends were snacking on as I made my enquiry.

After observing that no one reacted to the peanuts, I was inspired to conduct a simple (and admittedly unethical) experiment. One evening, instead of translating honestly, I told my companions at a large banquet that the kitchen had promised to avoid using MSG. Everyone thanked me and happily ate their meal, dish after poisoned dish.

An hour later? Two hours later? The next day? Nothing.

I repeated this experiment on multiple occasions, always with the same result. And yet foreigners living in China routinely complained of reactions to their food that included headaches, chest pain and shortness of breath. Was there something about my presence that conferred temporary resistance to MSG? Or could it be that MSG sensitivity was only in their heads?

Chinese restaurant syndrome

In April 1968, the New England Journal of Medicine published a letter by Robert Ho Man Kwok that described a strange set of symptoms: "Numbness at the back of the neck, gradually radiating to both arms and the back, general weakness and palpitation." Stranger still was the fact that Kwok, himself a Chinese immigrant, typically noted the onset of these symptoms 20 minutes after eating at restaurants serving "Northern Chinese food".

An editor at the journal titled Kwok's letter "Chinese restaurant syndrome", and thus began a minor epidemic. For countless sufferers, a mystery had been finally solved. "No MSG" signs sprang up across the US, and, eventually, the world. Study upon study confirmed the syndrome's existence and speculated about the science underlying it.

But after reading some of these studies, even a layperson will start to get suspicious. Take the editorial note that precedes Russell Asnes's article "Chinese restaurant syndrome in an infant": "The evidence that this infant had the Chinese Restaurant syndrome may be only circumstantial. However, the description of the symptom is accurate as attested to by the Editor's wife who suffers from the same malady. Incidentally, she remains a devotee of Chinese cuisine."

Science, that sworn enemy of circumstantial evidence, marched on, and slowly but surely physiological explanations of Chinese restaurant syndrome began to lose credibility. Double-blinded studies failed to turn up evidence of a clinical condition. MSG, many people noted, appears in everything from sushi to Doritos. Journalists performed experiments similar to mine, their results echoing the consensus of professional scientists: in the overwhelming majority of cases, MSG sensitivity is a psychological phenomenon.

Despite this thorough debunking, a surprisingly large number of people – generally those who lived through the epidemic – still insist they are sensitive to MSG. Google around and you'll turn up scores of alarmist websites, which tend to combine outdated research with anecdotal, indignant rebuttals of the current scientific wisdom: "How dare you suggest my MSG sensitivity is only in my head? Why, just the other day I went out for Chinese and forgot to ask about MSG. After 45 minutes I couldn't breathe and my heart was racing."

Occasionally, as with vaccines and climate change denial, alarmism veers into paranoia, yielding accusations that a shadowy east Asian cabal is paying off scientists and journalists to regurgitate their propaganda. (Ajinomoto Corporation, I await your cheque!). For a small minority, MSG sensitivity somehow became more than a medical condition, and challenging its physiological basis poses a threat to their very identity. The harmfulness of MSG, a seemingly trivial assertion, took on the importance of a religious doctrine, a fundamental truth to be defended at any cost. But why?

Gluten rising

In 2007, my wife's cake shop did not offer a gluten-free option. Six years later, hardly a month goes by without a request for a gluten-free tasting. Thanks in part to celebrities such as Oprah Winfrey and Lady Gaga, nearly one-third of all consumers are now interested in gluten-free food, a multi-billion-dollar industry projected to exceed $10 billion by 2017. (Even children's play sand now comes with a gluten-free guarantee!)

This is very perplexing, given that only 1 per cent of the population has coeliac disease and only 0.5 per cent is allergic to wheat. What could possibly be causing widespread reports of non-coeliac gluten intolerance, commonly blamed for a raft of symptoms including gas, bloating, diarrhoea, constipation, fatigue, goose bumps, dizziness, infertility, migraines, joint inflammation and even mood disorders?

Scientists are applying themselves to the riddle, and last February Slate's Darshak Sanghavi reported on an Italian study that confirmed the existence of gluten intolerance ("non-coeliac wheat sensitivity") as a third, "distinct clinical condition". In the study, one-third of patients who self-identified as gluten-intolerant did in fact experience symptom relief after adopting a gluten-free diet. Case closed, right? Pass the gluten-free pasta.

Not so fast. An important implication of the study is that two-thirds of people who think they are gluten intolerant really aren't. In light of this, the even-handed Sanghavi suggested that "patients convinced they have gluten intolerance might do well to also accept that their self-diagnosis may be wrong".

Predictably, the comment thread exploded with rebuttals: defensive anecdotes, doctrinal pronouncements about the evils of gluten and accusations of corporate malfeasance, all of which bear a striking resemblance in tone and content to the rhetoric of anti-MSG advocates. For many, the truth of physiological gluten intolerance has now acquired a quasi-religious status.

Allergic to evidence

No one likes to be told they are mistaken about the foundation of their most dearly held beliefs. It offended the faithful when Karl Marx suggested that religions are psychological tools meant to placate the masses. Suggesting that gluten intolerance might have a psychological basis threatens a similarly foundational belief, namely that we are rational beings, competent interpreters of reality immune to mass hysteria and self-deception.

Obviously this is not the case. For one, our memories are notoriously unreliable. You may remember getting headaches from Chinese food when in fact those memories were created when you read about Chinese restaurant syndrome in the news. The same is true for memories of gluten intolerance. Don't forget, certainty about your memories is not sufficient evidence of their truth: "Look, I know that for the last 20 years, every time I ate gluten it gave me terrible gas."

Under oath, eyewitnesses constantly forget crucial details and replace them with their own fabrications. They aren't liars – they're just human. One reason for this unreliability is that memory and perception are prone to confirmation bias. Once a bias is in place, we'll selectively remember – and notice – whatever facts help confirm it.

Food historian Ian Mosby has explained the "success" of Chinese restaurant syndrome by connecting it to racialised discourse that drew on a vision of Chinese cooking as bizarre or extreme. In the case of gluten intolerance, it doesn't take much to come up with a plausible confirmation bias. Only nine years ago, 1 in every 11 Americans was on a low-carb diet. In a country terrified of weight gain and recently obsessed with the Atkins diet, gluten makes a great villain. It's hard not to notice the theme of weight loss on gluten-free sites. Pasta, bread, cake, cookies, pretzels – they don't just make you fat, they make you sick! (Added bonus: diets motivated by a medical condition are far more effective – ask any diabetic.)

Nocebo nosh

Confirmation bias meets physiology in the placebo effect, a well-documented phenomenon in medical treatments ranging from sham drugs to sham acupuncture (where patients respond positively to sham needles) to sham knee surgery.

People's desire to believe in a cure actually affects their symptoms. That's why placebo-controlled, double-blinded studies are integral to medical research. Without them, we'd be in constant danger of ascribing physiological causality to treatments that are actually psychological.

Needless to say, placebo effects aren't always beneficial. Strong belief can also render a harmless substance poisonous, which is exactly what happened with MSG. Scientists refer to this as the nocebo effect, and it means that careful studies are necessary to distinguish between poisons and poisonous beliefs.

None of this minimises the relief felt by those who undergo sham acupuncture, or the symptoms of those who think they are gluten intolerant. Pain is pain; chronic diarrhoea is chronic diarrhoea. All it means is that pain relief might not be caused by the physical presence of an acupuncture needle, and diarrhoea might not be caused by the physical presence of gluten. In these instances, the symptoms may be real, but their cause (and potential resolution) is all in our heads.

Mindful of suffering

It is here where the trouble begins. There's something intensely disturbing about the notion that we can make ourselves sick. Belief, not physiology, becomes the causal agent, displacing MSG or gluten as the source of blame for someone's suffering. This can make us feel vulnerable, stupid and weak, as though we have the choice to be better but lack the mental acuity to manage it. Not only that, it's hard not to feel like a psychological explanation trivialises one's condition – hence the expression "It's only in your head." But things that are in our heads aren't fake or unimportant (OCD? anorexia?), and susceptibility to a nocebo effect isn't a sign of weakness. Anyone can unknowingly invent a false memory or react to a substance that is actually benign.

Accepting a psychological explanation of gluten intolerance is especially difficult because food aversions often turn into a way of life. Like religion, avoiding gluten requires personal sacrifice. Gluten intolerance creates communities, which, like religious communities, share stories of suffering and redemption, and share meals made special by the presence of a food taboo. It's no wonder people take offence at the suggestion that gluten intolerance could be psychological – after all, who wants to have built their way of life on a "mere" trick of the mind?

Thinking that way is a mistake. Reductionist psychological explanations of religious beliefs can be offensive because they deny fundamental religious truths: "You believe in heaven to stave off your fear of death, not because it really exists." Legitimate psychological explanations of medical conditions, on the other hand, deny no such truths. The question of whether and to what extent MSG and gluten cause physiological reactions is scientific, not religious. When one's explanation of a medical condition becomes an unquestionable truth, the explanation is no longer scientific.

Many basic claims of nutrition science are unintuitive and sometimes don't stand up to repeated research. (Salt? Cholesterol? Vitamins? Alcohol? Coffee?) At this point, scientists simply don't have a good explanation for the mechanism and prevalence of gluten intolerance – hence the need for studies about whether it exists at all.

Maybe people have always been gluten intolerant and were going undiagnosed – as is true with coeliac disease. Maybe our guts haven't evolved to process gluten – as some advocates of the Palaeolithic diet claim. Maybe it's Monsanto (conspiracy theorists rejoice!). Maybe gluten intolerance isn't really caused by gluten, and we should actually be blaming a family of proteins in wheat called amylase trypsin inhibitors.

None of these explanations is "only" in our heads, which makes them feel more acceptable. But to deny the distinct possibility that gluten could be another MSG, at least for some people, is to deny what science has confirmed, again and again, about our nature as human beings.

So when some annoying friend implies that your gluten intolerance is psychological, go right ahead and be offended. But when science suggests it? Best to listen up, question your self-diagnosis, and remind yourself that nocebo effects are nothing to be ashamed of.

Alan Levinovitz is an assistant professor of Chinese philosophy and religion at James Madison University in Harrisonburg, Virginia. This article first appeared in Slate magazine

 

Thanks for posting this. Most of my painful ailments, sciatica and diffuse severe abdominal pain, started around a time of great stress. I'm just now starting EMDR (even tho I don't really really believe in it) for the PTSD resulting from those events. I made my abdominal pain go away in 2009 by becoming gluten free and I still am mostly gluten free while the sciatica has become worse and worse and worse. I basically was taking tradamol everyday to not be in constant pain. I'm trying to get off tramadol, but I won't lie, I love that stuff.

ENTER Dr. Sarno's books about 2 months ago I finally read "Healing Back Pain" and my sciatic pain was immediately greatly reduced...not surprising to this crowd. But CRAP my low-level generalized anxiety quickly became daily panic attacks (and NO deep breathing a meditation doesn't help) so I sought out counseling for the anxiety because xanax doesn't work better for anxiety than tramadol does for pain. And honestly I wanted just the pain back...maybe my subconscious was right to distract me.
Then I started the therapy and the actual EMDR hasn't started but we talked about the trauma and BOOM!! All my constant horrible abdominal pain has returned, even when I'm not eating gluten. And guess what? There isn't a pill that works for that!
I'm obviously on the right track but in the thick of starting to feel my feelings and I HATE IT.
I think my gluten intolerance was a nocebo effect but I'm not ready to eat it willy-nilly because I have a lot to deal with right now.

 

Very interesting! Thanks for sharing!

 

@ladyofthelake, have you ever been tested for celiac disease? It's an autoimmune condition and not a sensitivity. It can be good idea to rule that out. I live with it and it's no fun, if I accidentally ingest gluten I get seriously ill (it also takes a long time to heal the damage afterwards).

I think it's important to be clear about these issues, there's a huge difference in being sensitive to gluten and having an autoimmune disease. I come across many that doesn't take my condition seriously because of the "gluten-free craze" and it really saddens me.

 

She said her abdominal pain went away in 2009. If it is really celiac disease I don't think it would go away for 6 years.

There are a few mind body experts think celiac disease created by negative emotion. (dr. Bruce Lipton)

 

Well, she said that she made the abdominal pain go away in 2009 by eating a gluten-free diet, so if the pain went away when she ate gluten-free it's possible that she could have celiac - the only way to treat celiac is to eat a gluten-free diet. Since she now eats "mostly gluten-free" and is in pain, it could be due to not being 100% gluten-free. Following a lifelong gluten-free diet is the only medically accepted treatment for people with celiac disease.

As for celiac disease being "caused by negative emotions", one could question if that seems at all plausible and how that would relate to pediatric celiac disease.

When it comes to serious health conditions like autoimmune disease and the like, it's important to understand that you have to get proper medical treatment otherwise it can lead to very dire consequences.

 

It's been noticed that people are able to eat imported European wheat, even if they have gluten problems. I think much has to do with how much modification goes into our crops grown in America. Also, years of eating things the body can't recognize and process: MSG, preservatives, food coloring, bug sprays, nutrisweet, modified fats, all the poly's. Along with the fact that processed foods are subject to plastic wraps and packaging that leaks unnatural toxins. Personally, I think microwaving changes the structures of the cells in food, making it unrecognizable to our body. That's my two-cents.

 

Hi Simplicity, I read my post above again and think what I wrote sounded pretty blunt. I want to apologize if it seem that way. Sometime we type and run and didn't realize it doesn't sound very nice.
Anyway, back to celiac disease. For someone who has CD to go 6 years without pain is extremely rare. Even with a strict gluten free diet, most CD sufferer will continue to have symptom. GT free diet may help but it don't cure. They continue to have pain on and off even with a 100% GT free. That's why I doubt that she has CD.

Yes you are very right on this. Like ACE (at tmshelp forum) often said, Just because something is tms doesn't mean it won't kill or disable you. You have to take your med follow recommended diet if need be, but work on your root causes, which quite a few experts think is the mind/emotion.
Pediatric CD like pediatric cancer ... are extreme case of tms. (ACE thought this is the case) This is just purely what I chose to believe. It carry over from the mother, who are often stress and/or suffer from tms. The gene is not defect, it's the "environment" that turn the genes bad (Dr. Bruce Lipton). And then how do we explain those countless cases of people over came cancer and CD. Spontaneous healing? miracle? I would rather believe it is due to a less stressful life, a more accepting attitude than miracle. Something positive in their mind help change the "environment" from bad to good and cure them.
Also, surgery, PT, bed rest, and steroid shot used to be the only medically accepted treatment for back pain. It was always that way until Dr. Sarno show us other way. I think we have to keep an open mind. It may save us from many diseases that the conventional medical world have no cure for right now.
There are countless stories of people overcame lyme disease, CFS, Fibromyalgia, gout, arthritis,... many "incurable" conditions/diseases. How do we explain those successful cases? Their genes suddenly turned good? I personally overcame my lactose intolerance condition using the tms approach. My doctor told me LI is genetic. well, somehow tms approach changed my gene and I now no longer lactose intolerance.

Here is an article about stress may causes CD: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3798910/
And here is what Mayo clinic said about CD on their website: "Sometimes celiac disease is triggered — or becomes active for the first time — after surgery, pregnancy, childbirth, viral infection or severe emotional stress." To me, Most of them are traumatic or stressful events, I don't think this is coincident that something stressful almost always happened before the first celiac disease diagnosis one has.
BeyondCeliac.org said: Some symptoms of anxiety overlap with symptoms of celiac disease, such as nausea, dizziness, numbness or tingling in the hands and feet, and not being able to be calm or still.

All these are just my belief. I am not saying what I said is right or wrong. I just think we need these friendly discussion so we can keep an open mind in hope that someday we will find a cure for all these so called incurable diseases. Before Dr Sarno, no one thought back pain were from our negative emotions or our anger. If our forum's success stories section is any indication, we have overcame tons of "incurable" conditions/disease by just using the tms approach. If we keep hold on to the old belief and blindly follow the old modern "medically accepted" way of thinking, all of us would still in bed suffering from back pain and hundred of other diseases.

 

FYI, I just had a gluten free corn dog and the coating on it was awful .

 

That's OK, balto. That can happen sometimes.

I know that someone with celiac can/will have flare-ups and this is most likely caused by accidentally ingesting gluten (it's extremely difficult being out and about and being 100% gluten-free) or being sensitive to proteins that are similar to gluten structurally. I don't have a complete report from ladyofthelake, but if she says she did a lot better being gluten free, it could possibly due to having celiac, I'm not saying that she has it, just that it can be a good idea to at least rule it out.

Bruce Lipton (much like Louise Hay and Joe Dispenza - @Forest created a thread about him, it's worth checking out) is questionable so I won't go into a discussion about him or his ideas. I'm not disputing the use of meditation and mindfulness when it comes to health and dealing with disease, but what causes and cures disease is a lot more complex than some would have you believe. I'm not saying that stress doesn't influence us badly and that it leads to various ailments, but it's not as simple as 'negative emotions causes autoimmune disease'.

I've also come across these 'miracle' cures and often you don't get the whole picture. I'm not saying that people don't go into spontaneous remission and it's very possible to live symptom free by using different approaches, like diet and stress-management while still having an autoimmune condition, but that doesn't mean you're cured or don't have to be under medical supervision.

When it comes to miracle cures, I've seen people mentioning a woman, Anita Moorjani, on this forum. She has an amazing story of how she was cured of her cancer. This is what @Mala wrote about her:

It's very common to come across stories of people within the 'alternative medicine' circle choosing to treat their cancer with vitamin-c injections (for example) and forgoing medical treatment, which ends up killing them. This is extremely sad and it upsets me that there're many people out there that promotes ideas like that.

Yes, people can believe whatever they want, of course, but sometimes those beliefs will lead them down a very dark path. I'm personally someone who thinks it's crucial to use critical thinking, to investigate people before buying into their ideas. I'm allergic to anything new-age-y, but then again, maybe that's a TMS symptom too.

Just because some symptoms of other diseases overlap with TMS symptoms doesn't make it TMS - you can have numbness/tingling in your limbs and it can be TMS, but it can also be something much worse.

I think it's irresponsible to say that everything is TMS, because that can cause people to ignore medical treatment and I don't think it will do the TMS community any good to jump to extreme conclusions like 'cancer in children being an extreme form of TMS'. It's taking things too far and it will make a lot of people walk away from the whole concept. There're many things yet to be discovered, but it's important to follow a scientifically sound route, get proper confirmation by real scientists.

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What made me post in this thread originally is the fact that there're people who are intolerant to gluten (ie. not simply sensitive) and for them it's vital that they stay away from it. So when I read a post about it 'only being in your head', I have to mention that it can have a very negative influence on people.

Many have come to think of people who are eating a gluten-free diet as silly, even those who have no other option, because of it being talked about so much - it causes a lot of problems.


My point is this:

We should look at the emotional (mind|body) aspect of illness and work at becoming better at handling stress, etc. That's an important piece of the puzzle, but (for some) it's not the whole puzzle.

 

Well thought out post Simplicity! Yes not everything is TMS, but, a lot of stuff is--maybe 80%. In SteveO's new book, Andrea Leonard Segal, MD, in her introduction, says to get medically checked out to make sure it's nothing serious that should be treated like: cancer, infection or fracture.

I think where the confusion comes in about "it's all in your mind" stems from how the Good Doctor's theory evolved over the many long years of his practice. Dr. Sarno was a rehab doctor who treated limbs and such. So, he saw patients with anatomical injuries that involved muscles, joint, ligaments and tendons. He wasn't an oncologist or some other medical specialist. Injuries like this are more work or sports related and not normally life threatening. Thus the acronym TMS stood for Tension Myoneural Syndrome having to do with O2 deprivation to muscles, etc. Through his subsequent career he expanded TMS to a myriad of other dis-eases and the acronym was expanded with the help of Dr. Marc Sopher to the current THE MINDBODY SYNDROME.

To me whatever works, you have to keep an open mind, in the end we are ultimately responsible for our health and our lives and shouldn't abdicate that to others.

After getting a google alert about a recent study in the Lancet, about ibuprophen not being effective for hip and knee osteoarthritis, I'm experimenting with what was recommended by the study as being more effective, diclofenack, (votaren); so far seeing some usefulness from it.

 

@Tennis Tom - Thanks. I agree with you that most gluten-free products aren't that tasty. Some seem to think that it's healthy just because it says gluten-free on the package, when in fact it's often the opposite (the ingredient list usually takes about half an hour to get through). 'Gluten-free' has become a marketing gimmick, as it was with the low-fat products... and I prefer to stay far away from those things.

I also like the term Mind-Body Syndrome, I think it explains the condition much better than TMS and it's the term I use as an affirmation when I get tense and need to remind myself of what's going on. It's really helpful.

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@Forest - Thank you for your input, I appreciate it.

I liked Chuck's post and the fact that he quoted Dr. Schubiner - I think he's well-informed and reasonable.

When it comes to autoimmune conditions, I agree that there seem to be many factors that contribute to them. There's no doubt in my mind that the techniques we use on this forum can/will help when dealing with these kinds of health issues; they can be a great addition to other treatments and help reduce flare-ups and symptoms. I think everyone would benefit from them because it improves your quality of life so much.

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For learning more about celiac disease I recommend this page: WHAT IS CELIAC DISEASE?

 

I just saw this question about testing for celiac. I havnt been tested because I was too scared to eat gluten again, which I would have to do to get testing. Now my sciatic pain is almost all gone and my anxiety is much less. I might just start eating gluten because it is either TMS or celiac, neither of which I can test out unless I resume eating gluten. I'd probably have to utilize my TMS combatting skills because at least my brain is convinced gluten causes me pain...but real pizza sounds amazing...

 

I have to read this more thoroughly, but my heart says this is true.

 

I was diagnosed almost 20 years ago with severe damage to the villi of the intestines indicating severe celiac disease per endoscopy. I disagree. In my case, I felt it was toxins within the food. All the crap they spray in the fields now. I went on to do colon and parasite detoxing and eat organic wheat and gluten products. And To believe I was healed. I have had numerous testing done and each time it shows no sign of celiac disease. And this is after and while consuming a gluten diet. And yet doctors said I must be 100% gluten free ( which I never have been) . I so easily could have allowed the doctors to put that fear in my mind, but I didn't. So there is a mind component to things like this. And that often times doctors can put a big amount of fear in us regarding illnesses.

 

Here's the latest news about the gluten-free fad from Harvard:

https://www.rt.com/usa/380201-gluten-free-diets-diabetes-increase/ (Popular gluten-free diets increase diabetes risk – research)

 

HA! I was put on a low FODMAP (gluten free) regimen for several months. Have various antacids, did the breathing test (don't ask) stopped pro-biotics and started an anti-biotic, and then went to a nutritionist who said I wasn't getting enough fiber. That was Friday. I left feeling elated for no good reason. Actually, there is a reason. My IBS and all the attendant discomforts are certainly Mind-Body psychologically based. I was following the exact pattern I did with back pain. Consultations with MD, MRI and cortisone, useless PT--then found Sarno and got better. So I am going to do the same damn thing now. Stop panicking and get myself better. I am going to eat bread.