You probably don’t have gluten sensitivity – few actually do

Although it may seem like I write only about the lies and ignorance of the antivaccination cult, I truly despise all kinds of pseudoscience. It’s just that refusing vaccines that prevent real diseases, based on antivaccine misinformation (OK, lies), relates directly to the health of real children everywhere. Most (but certainly not all) other pseudosciences are not that dangerous, just terribly annoying. The sudden onset of gluten sensitivity across the world is one of those annoying trends.

With respect to ridiculous health beliefs and fads, I declare 2014 to be the Year of Gluten. I swear that there is more popular discussion of gluten than organic food, though I suppose that organic, GMO-free, gluten-free food would be the next billion dollar idea.

Like avoiding carbohydrates, fats, GMOs, and whatever else, gluten free diets have some relationship to real science and medicine, but it has exploded into a fad that has far exceeded the real medical issues surrounding gluten sensitivity.

What is gluten?

Gluten is a protein found in wheat, and similar proteins found common grains such as barley and rye. Generally, we like gluten, because it gives elasticity to dough, allowing bread to have that chewy texture that is an important component of the pleasure of eating.

Without trying to be a Food Network Star, gluten is critical in baking everything from bagels to cakes. Generally, kneading the dough forms long chain gluten protein molecules giving a chewier and chewier texture. Pastas, breads, and so many other foods are made through high gluten flour that is worked hard to create longer chain proteins. Yes, good cooking involves intense knowledge of chemistry.

Gluten can be removed from the milled flour (or it can be added back). Purified gluten, because of its texture, is actually used to create fake meat products, so beloved (or not) by vegans.

So what is real gluten sensitivity?

Yes, there really are people who are sensitive to gluten. Celiac disease (also known as coeliac disease in British English) is an autoimmune disorder that afflicts the small intestine of certain  individuals who are genetically predisposed to gluten sensitivity. The disease afflicts between 1 in 1,750 and 1 in 105 people in the United States (or about 0.05 to 1%), a tiny number.

Celiac disease usually presents, but not always, with chronic diarrhea, low pediatric weight gain, and fatigue in response to gluten.

Although the disease is not completely understood, in a person with celiac disease who is exposed to gluten, the immune system causes an inflammatory reaction of the lining the small intestine. This interferes with the absorption of nutrients. The only known effective treatment is a lifelong gluten-free diet.

This disease should not be confused with wheat allergy, which is also caused by a reaction to wheat proteins, including gluten. However, there are over 20 different wheat proteins that have identified as causing wheat allergies, and gluten generally is not the cause of wheat allergy. Finally, wheat allergies are extremely rare, and the gluten form of wheat allergies is so rare that it would take a huge population to detect it.

Outside of celiac disease and wheat allergies, both of which can be diagnosed objectively through comprehensive medical tests, there is a large group (by some reports, over 100 million Americans) who claim that they have some mysterious gluten sensitivity, which has a real name, non-celiac gluten sensitivity.

There is some research into this potentially real or mythical condition, and there might be some small (smaller than the numbers for celiac disease or wheat allergy) number of people with a previously unknown type of gluten sensitivity, but I doubt it.

Think about this–humans have evolved with cereal grains for 20-30 thousand years, so in modern human evolution, those who couldn’t consume wheat would have had lower fitness. That there are 100 million Americans who sprung from 1 mutation that caused some unknown gluten sensitivity boggles the mind–it’s just not plausible. However, once the large study is completed in a few years, maybe we’ll know of another gluten sensitivity that is supported by real science based medicine. Right now, all we have is anecdotes, which are never real scientific data.

Gluten-free diets

 

gluten-free-foods

So those with a real diagnosed wheat gluten allergy or celiac disease, treatment is simple–avoid glutens. I’m guessing that this new food fad has made gluten-free diets much more accessible to people with real gluten issues, because from a business point of view, most food manufacturers wouldn’t make gluten-free foods for the less than 1% of the population who have true gluten sensitive.

But, there are multiple problems with a gluten-free diet:

  • Strict adherence to a gluten-free diet may limit the amount of folate, fiber, iron and other micronutrients consumed.
  • Compliance may be an issue since products may not be labeled correctly, or individuals choose to eat grain-containing foods just for variety. Inadvertent gluten exposure is common. Biopsy of the small intestine 2 years after adopting gluten-free diet shows tissue damage persisting in up to 50% of adults and 25% of children with celiac disease.
  • According to one study, regular consumption of as little as 50 mg gluten, the amount found in 1/100th of a standard slice of wheat bread, damages the intestine in celiac disease. A typical Western diet contains 16 g of gluten, more than 300-times the minimal toxic dose for someone with celiac disease.
  • This study concludes that persistent inflammation of the small intestine is associated with greater risk of cancer and osteoporosis.
  • One of the most important considerations is that a gluten-free diet costs about $2,000 annually, more than many medications.

So if you really have a real gluten sensitivity, it isn’t a matter of telling people that you have a gluten sensitivity, watching your diet isn’t a matter of anything except life or death. For those with real celiac disease or wheat gluten allergies, even a tiny amount of gluten is dangerous. And it’s not the “I don’t have energy” kind of dangerous, it could be life threatening kind of dangerous.

The signs of an imaginary gluten sensitivity

  1. A real physician hasn’t diagnosed the gluten sensitivity using real diagnostic tools. Once a person is diagnosed, usually during childhood, then it’s not something that becomes party conversations. One doesn’t bring up the fact that one crouton in a salad may make your intestinal tract fall out of your body into the toilet. Because that’s a real gluten sensitivity.
  2. Still chugging beers. Beer is bottled gluten water. If you drink beer, you do not have a real gluten sensitivity.
  3. Trying to “watch your gluten consumption.” Sorry, but celiac disease and real wheat gluten allergies are an on/off disease. That is, there is no acceptable amount to consume, any amount is dangerous. There are individuals who can lick a piece of bread, not eat it, and fall over sick. Again, you can’t “watch” the amount of gluten you eat, you watch for every tiny bit of gluten that may appear anywhere. Someone with real gluten sensitivities are basically obsessive about their food, because not doing it is dangerous. Bragging to someone that you’re “watching” your gluten probably means you don’t have a real gluten sensitivity.
  4. Your gluten knowledge comes from Natural News, The Food Babe, or other pseudoscience website. Your knowledge of gluten should come from your physician, preferably an allergist, and with additional information from a science-based national or international celiac disease organization. It’s easy to diagnose celiac disease or a wheat gluten allergy. If you have some other type of gluten sensitivity, it’s important that your physician establish that it is real or not related to a more serious chronic disease.
  5. You claim you feel better without gluten. Someone with a real gluten sensitivity didn’t develop it when they turned 30. It’s something that mostly (but not always) shows up in childhood, and a real celiac disease child won’t say they feel better without gluten, they’ll say how horrible it is when they accidentally consume it. It’s not some new age therapy with intangible results like “I can’t point it out, but I just feel like a new person.” Real gluten sensitivity means if you have gluten, you want to rip your intestines out of your body without anesthesia.
  6. You say that it’s easy to eliminate gluten. No it isn’t. And it’s not eliminating 99% of gluten, it’s eliminating 100% of any gluten anywhere. It’s very difficult to do. It takes time to do shopping (parents of celiac children are obsessive about food labels). It means supplementing your diet with other protein and with micronutrients that are missing when you remove the gluten. It’s asking a waiter or caterer whether any gluten products even touch the food or is used in some sauce. It’s being preoccupied with every aspect of your diet, while worrying if the next food item is going to cause massive pain and discomfort. This isn’t easy, it sounds pretty close to impossible, and that’s why if you say it is easy, you’re probably do not have any type of gluten sensitivity.

All about gluten, the TL;DR version

So, if you run into anyone who exhibits any of those six signs I wrote above, you probably can place them into the category of mostly imaginary gluten sensitivity.

It’s important to note that real gluten sensitivity is a known, real disease, and its treatment is difficult. But it is very rare, and like I said, it can be easily diagnosed. Sufferers of the disease know that there’s a difference between a tiny bit of gluten in the diet and none at all–it’s painful and terrible.

Again, the benefit of this food fad is that individuals with real gluten sensitivity now have better accessibility to gluten-free foods. And that’s good. Sadly, this fad too shall pass, and then those who need it will have to search again for gluten-free foods.

Editor’s note: This article was originally published in January 2015. It has been updated to improve formatting, fix dead links, and revise some points.

Key citations:

 
 
The Original Skeptical Raptor
Chief Executive Officer at SkepticalRaptor
Lifetime lover of science, especially biomedical research. Spent years in academics, business development, research, and traveling the world shilling for Big Pharma. I love sports, mostly college basketball and football, hockey, and baseball. I enjoy great food and intelligent conversation. And a delicious morning coffee!
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  • GamerDarling

    Since you wrote this Monash University has done some studies indicating a few things relevant to your article. First, that there are some people who do not have Celiacs but still do not tolerate gluten- however, and rather oddly, their main symptom appears to be depression as opposed to the symptoms generally found in FGIDs. Another sector(IIRC ~18%) of those that claim to be gluten intolerant actually are undiagnosed celiacs(they even cite a number of reasons for why they went undiagnosed, generally to do with poor testing standards/lack of understanding of FGIDs).

    Finally, and most interestingly imo, many that claim to be gluten intolerant and believe it enough to join a medical study(around half) are in fact sufferers of IBS who legitimately feel better on a gluten free diet- but only because the gluten free diet generally involves removing other trigger foods as well. (A better diet seems to be the fodmap diet)

  • roscoe

    I am a coeliac that was diagnosed 12 years ago at the ripe age of 56. For years I has symptoms sometimes. I am what is described as asymptomatic and only know of damage by biopsies. This presents a real problem to me as I need to be super observant about what I consume. Also as you have stated to be coeliac takes over your whole life. It determines where you travel, how you travel and where you can eat.
    Nobody wants to be a coeliac. Nobody in their right mind that is.

  • WalterKelly73

    I’m not sure why this has become so controversial. We have roughly 20million+ people with IBS in the US alone and randomized control trials (look up Gibson’s work) have shown that gluten resulted in digestive and neurological issues.

    His second study highlighed that fructans were more damaging but that a big sampling of the people (in a double blind placebo controlled study) were depressed. His follow up study demonstrated that gluten was a causative effect.

    Why are we so angrily dismissing people’s judgement on simple things like this?

    As for what, there are also studies that show that modern wheat is considerably more irritating to people than “ancient grains”. Look up Peter Gibson’s work in PubMed to understand more about gluten and these 2 studies to see how modern wheat is fundamentally different than the wheat we used to eat:

    http://www.ncbi.nlm.nih.gov/pubmed/24521561
    http://www.ncbi.nlm.nih.gov/pubmed/23299714

    • Mike

      Wow, a study reporting results where subjects reported on feeling bloated, feeling pain, tiredness, and my favorite: satisfaciton with stool consistency.

      No subjectivity there.

      Compared to the actual findings of gluten in wheat
      http://pubs.acs.org/doi/full/10.1021/jf305122s#

      Showing no actual change in gluten. Some ancient grains had more gluten…

      Now, on to Dr. Gibson. His latest work explains why his earlier work was wrong:

      http://www.gastrojournal.org/article/S0016-5085%2813%2900702-6/abstract
      Conclusions

      “In a placebo-controlled, cross-over rechallenge study, we found no evidence of specific or dose-dependent effects of gluten in patients with NCGS placed diets low in FODMAPs.”

  • Bloody hell. I had no idea how bad Celiacs have it. I feel for them, and hope that in a few more years, they have better treatments or even a cure for it.

  • Geoffrey Levens

    Just saw this on Daily Kos. Gluten is a protein. People have allergies to proteins. A person can develop an allergy from exposure and also “out grow” one. I used to be terribly allergic to gluten but seem not to be now. I do agree that most people who are “gluten sensitive” aren’t, more likely FODMAPS or just chronic g.i. inflammation causing intestinal permeability with root cause being a crappy diet

    • Yes true. But again, it can be diagnosed, which is much more important to the story. Just saying you’re allergic, whenever it developed isn’t the relevant point. If I suddenly didn’t feel right after eating a certain food over and over again, I’d find out why.

      So, we’re mostly on the same page.

    • WalterKelly73

      An allergy is a response to a protein within food and it is HIGHLY unlikely you will outgrow it. If you had a true allergy to a protein (nut allergy, gluten allergy) you could end up in anaphylatic shock from ingesting it.

      A sensitivity is much less severe than allergy. It isn’t necessarily an immunological response but just a “reaction” to what’s been eaten.

  • doodlebugrusty

    Excellent article, but I’ve wondered if maybe what some of these people are reacting to is the GMO modified forms of grains in some of their products without knowing what was bothering them? Not enough for a true allergy, but enough to bother an intestinal system. I think it is something that should be scientifically tested.

    • Yes, grains have been genetically modified for 10,000 years. We’ll try to determine if 10,000 year old man had as many issues as modern man. Oh wait. Celiac disease is so rare and is a genetic abnormality.

      Here we go with the GMO bullshit. Sigh.

    • It isn’t. GMO is not an ingredient. The only GMO grain is wheat, so it’s not grains, plural.

      Also, like the Raptor said above: That sort of thing would have shown up in their childhood (usually), not in their 30s.

    • SFBurke

      Why would you think GMO modified foods would matter? Is there any evidence to support that view? Any research? Is there any reason to believe that modifying foods via biotechnology is different than through radiation or hybridization? In fact there isn’t.
      So yeah, you can speculate about GMOs but there is absolutely no reason to believe that GMOs are the issue unless you have some quasi-religious belief that certain things that are deemed “natural” are somehow inherently better than those things that you deem to be “not natural”. As the anti-GMO movement relies on such quasi religious view and ignores the rather clear science on GMOs, I suspect that is really where your view is coming from.

  • Pcknshvl

    What about FODMAPS (Fermentable, Oligo-, Di-, Mono-saccharides And Polyols; http://en.wikipedia.org/wiki/FODMAP)?

    By eliminating “gluten” and claiming some sort of improvement in health, one may really be benefiting from eliminating FODMAPs and the discomfort they cause.

    • I’m not into fad food beliefs that are not strongly supported by scientific evidence. This has no place in this discussion.

      • Pcknshvl

        Neither am I. Guess I’m guilty of not following this idea further. But it makes more sense to me than pretend gluten intolerance. Of course, the “FODMAP Diet” is already out there.

      • SFBurke

        Well there is some reputable science behind FODMAP (you can look at what is being done at Stanford University) — but it is still in the early stages and may only be applicable to people with known issues such as Crohn’s disease.

  • While I agree with the bulk of this article, there aren’t any nutrients, folate included, that isn’t abundant in many other natural foods like spinach, lettuce,broccoli, avocado, citrus, tropical fruits…. It’s such an old wive’s tale that one ‘needs’ grains-‘whole’ or otherwise. It’s been disproven many times over.

    • I do not ask a reader to “agree” or “disagree” with me. I ask that they provide high quality published sources for any statement.

      I do not advocate eating or not eating anything. Well, I suppose I’d be opposed to cannibalism, but that’s not relevant here. Human evolutionary history is tied closely to the domestication of grains. That’s a scientific fact. We can eat grains as much as our other great ape ancestors did. And they were as healthy or unhealthy as anyone.

      Yes, we can get folic acid from many sources, but it’s not enough. That’s why pregnant women in ALL developed countries are routinely given folic acid supplements. And that’s why neural tube defects have dropped substantially.

      • Human evolutionary history only domesticated grains in the last 25,000 or so years. Considering humans have been around millions of years, that’s the proverbial drop in the bucket. We’ve also created cigarettes and other addictive drugs; so what we’ve created or domesticated is not a sufficient rationale.

        You said that ‘strict adherence to a gluten-free diet may limit folate.’ The sky may fall tomorrow. I simply pointed out that we do not need grains for folate.

        A quick google search brought this quick list of the top 10 foods for folate, and grains/wheat are WAY down on the list:

        http://www.healthaliciousness.com/articles/foods-high-in-folate-vitamin-B9.php

        I never stated pregnant women especially didn’t need folate. For you to bring it up as a rebuttal to me is veering off the point of my comment.

        And where is your proof that people who choose to go grain free do not source, from real foods, all the nutrients that they need? You know, ‘providing high quality published sources’ for your statement?

        No worries, your blog, so you can go on about whatever you want. I wasn’t here to argue, I was here to suggest an alternative thought, which clearly you don’t much care for. Again, your blog. I get it. No need for me to return.

        • Wrong. Homo sapiens sapiens, the actual species to which we belong, arose around 200,000 years ago. You are conflating domesticated grains with something that makes no sense. Great apes eat all kinds of grains, and have always done so.

          YOu’re inventing stuff.

          Bring real science published in REAL journals, or don’t bother with spamming links.

  • James

    For more on the science of how gluten interacts with the digestive system check out http://www.phdish.com/blog/2014/10/3/is-non-celiac-gluten-sensitivity-real

    • I disagree with your overuse of animal studies, but there is a reasonable amount of science in your article that could be useful.

      • James

        I’m curious if you’ve seen this http://www.mdpi.com/2072-6643/7/3/1565/htm. They have an abysmal sample size, but somewhat interesting results pertaining to intestinal permeability. I can’t make heads or tails of their cytokine data (undectectable IL-10 in remission, but low levels in active celiac disease?), and I’d wager it’s an artifact of the sample size. We can all agree that 99%+ of the gluten free fad is bullshit, but after researching my article I’m starting to consider the possibility that there’s a real clinical entity lurking out there is some tiny subset of the population who claims benefit from a GF diet in the absence of celiac’s. You’re quick to dismiss it because “that there are 100 million Americans who sprung from 1 mutation that caused some unknown gluten sensitivity boggles the mind”. That is certainly implausible, but if there does happen to be any validity to gluten sensitivity it will have to arise from some combination of specific alleles in the immune system, cell junctions, and cytokine signalling cascades, with additional environmental conditions and more than likely a contribution from the gut microbiota.

        • I’ve written about this before, but only around <10% of studies like this end up having some sort of clinical usefulness, that is, becoming part of the body of data that becomes what we call "evidence based medicine."

          This study has numerous problems. One, it's ex vivo, meaning the tissue was removed from the actual patient. Though the information can be useful, it's not a real physiological environment.

          Two, the patient sample size is tiny.

          Three, the patients were ALL undergoing esophagogastroduodenoscopy for clinical reasons, meaning it's hardly randomized. The patients are selected for already having some sort of digestive issue. Talk about biased.

          No, i find nothing here that would indicate gluten sensitivity is real (other than in those with clinically diagnosed diseases that cause gluten sensitivity). I don't even consider this evidence to be at the level of observation.

          And one more thing. Implausibility is a GREAT reason to reject something, like this study. Without plausibility, you cannot provide evidence that correlates a cause and effect (let alone causation). Plausibility is a fundamental part of the scientific method.

  • roscoe

    While I agree with the bulk of the article I humbly would like to make the following statements.

    1. Not all coeliacs react as you depict. Some (confirmed) coeliacs are atypical of the symptoms. I myself do not have a harsh reaction to gluten just get a mouthfull of ulcers and a scalp disorder. The real problem is what it does to my villi.

    2. I was diagnosed at the age of 55. During a gastroscopy it was found I had no villi and was coeliac. It took me over a full 5 years of a gluten free diet for my villi to recover. It is common for adults to be found to be coeliac. They have had symptoms probably for years but due to lack of doctors interest or knowledge, fell through the cracks.

    3. People who claim to be gluten intolerant make it so hard for coeliacs. Imagine a waiter/chef being asked if they can cater with gluten free food then the patron asks for a bread roll.

    Sorry to intrude but it can be hard to convince somebody you are coeliac so late in life.

    • Sullivan ThePoop

      my mother had a friend that was diagnosed at 47. Although she went to the doctor because of excessive weight loss and they found she had it. So, she wasn’t completely asymptomatic

      • roscoe

        And sadly a sign can be the ability to put on weight can be a sign. The sad thing is that many people die from the disease without ever knowing.

    • I’m on board with your comments. You have to separate my rhetoric from what I know. I understand that any disease has a wide variance from the mean in terms of age, severity, symptoms, etc. But in general, you could have been diagnosed if you had more severe symptoms.

      Those who claim to be gluten sensitive and don’t bother to get diagnosed (or fail a diagnosis) are the ones that make me laugh. Being asymptomatic, you wouldn’t have thought to avoid gluten.