Flashback Friday: Is Gluten Sensitivity Real? & Separating the Wheat from the Chat

In 1980, researchers in England reported a series of women who suffered from chronic diarrhea that resolved on a gluten-free diet, yet didn’t have evidence of celiac disease, the autoimmune disorder associated with gluten intolerance. The medical profession was skeptical at the time, and even 30 years later, so much so, that much like patients who had irritable bowel syndrome, patients claiming non-celiac gluten sensitivity were commonly referred to psychiatrists because they were believed to have an underlying mental illness. Psychological testing of such patients, however, found no evidence that they were suffering from some psychosomatic hysteria.

The medical profession has a history of dismissing diseases as all in people’s heads—PTSD, ulcerative colitis, migraines, ulcers, asthma, Parkinson’s and MS. Despite resistance from the prevailing medical community each time, however, these health problems have subsequently been confirmed to be credible physiologically-based disorders rather than psychologically-based confabulations.

On the flipside, the internet is rife with unsubstantiated claims about gluten-free diets, which has spilled over into the popular press to make gluten the diet villain du jour. Claims like ‘17 million Americans are gluten sensitive.’ However, it must be remembered that this is also ‘big business.’

When literally billions are at stake it’s hard to trust anybody, so as always, best to stick to the science. What sort of evidence do we have for the existence of a condition presumed to be so widespread?

Not much. The evidence base for such claims was unfortunately very thin because we didn’t have randomized controlled trials demonstrating that the entity even exists. The gold-standard for confirming non-celiac gluten sensitivity requires a gluten-free diet, followed by a double-blind, randomized, placebo-controlled food challenge. Like they give you a muffin and you’re not told if it’s gluten-free or gluten-filled—to control for placebo effects—and see what happens. The reason this is necessary is because when you actually do this, a number of quote-unquote “gluten-sensitive” patients don’t react at all to disguised gluten and instead react to the gluten-free placebo. So it was truly ‘in their heads.’

But we never had that level of evidence until… 2011, when a double-blind, randomized placebo-controlled trial was published, which tested to see if patients complaining of irritable bowel symptoms who claimed they felt better on a gluten-free diet—despite not having celiac disease—actually could tell if they were given gluten-containing bread and muffins or the placebo gluten-free bread and muffins.

They started out gluten-free and symptom-free for two weeks and then they were challenged with the bread and muffins. Here’s what happened to the 15 patients who got the placebo, meaning they started out on a gluten-free diet and continued on a gluten–free diet. They got worse. Just the thought that they may be eating something that was bad for them made them feel crampy and bloated. This is what’s called the nocebo effect. The placebo effect is when you give someone something useless and they feel better; the nocebo effect is when you give someone something harmless and they feel worse. But the small group that got the actual gluten, felt worse still. So, they concluded, this non-celiac gluten intolerance thing may actually exist.

It was a small study, though, and even though they claimed the gluten-free bread and muffins were indistinguishable, maybe at some level the patients could tell which was which. So in 2012, researchers in Italy took 920 patients that had been diagnosed with non-celiac gluten sensitivity and put them to the test with a double-blinded wheat challenge by giving them capsules of filled with wheat flour or filled with placebo powder. And more than 2/3’s failed the test, like they got worse on the placebo or better on the wheat. But of those that passed, there was a clear benefit to staying on the wheat-free diet, confirming the existence of a non-celiac wheat sensitivity. Note they said wheat sensitivity, not gluten sensitivity.

Gluten itself may not be causing gut symptoms at all. See most people with wheat sensitivity have a variety of other food sensitivities. Two thirds are sensitive to cow’s milk protein as well, then eggs were the most common culprit.

So if you put people on a diet low in common triggers of irritable bowel symptoms and then challenge them with gluten, there’s no effect. Same increase in symptoms with high gluten, low gluten or no gluten, calling into question the very existence of non-celiac gluten sensitivity.

Interestingly, despite being informed that avoiding gluten wasn’t apparently doing a thing for their gut symptoms, many participants opted to continue following a gluten-free diet as they subjectively described “feeling better,” so the researchers wondered if avoiding gluten might be improve the mood of those with wheat sensitivity and indeed, short-term exposure to gluten appeared to induce feelings of depression in these patients. But whether non-celiac gluten sensitivity is a disease of the mind or the gut, it is no longer a condition that can be dismissed.

Until only a few years ago, almost the whole of the scientific world maintained that the wheat protein gluten would provoke negative effects only in people with rare conditions such as celiac disease or wheat allergies, but by the early part of 2013, it was largely becoming accepted that some nonceliac patients could suffer from gluten or wheat sensitivity

And indeed a consensus panel of experts now officially recognizes three gluten-related conditions: wheat allergy, celiac disease, and gluten sensitivity. So what percentage of the population should avoid wheat?

About 1 in a thousand may have a wheat allergy, nearly 1 in a 100 have celiac disease, and it appears to be on the rise, though there’s still less than a 1 in 10,000 chance Americans will get diagnosed with celiac in a given year. How common is wheat sensitivity? Our best estimate at this point is in that same general range, slightly higher than 1%, but still that’s potentially millions of people who may have been suffering for years who could have been cured by simple dietary means, yet were unrecognized and unhelped by the medical profession.

Although gluten sensitivity continues to gain medical credibility, we still don’t know how it works, or how much gluten can be tolerated, if it’s reversible or not and what the long-term complications might be of not sticking to the diet. Considering the lack of knowledge, maybe people with gluten sensitivity should try reintroducing gluten back into their diet every year to see if it’s still causing problems.

The reason health professionals don’t want to see people on gluten-free diets unless absolutely necessary is that for the 98% of people that don’t have gluten issues, whole grains—including the gluten grains wheat, barley and rye—are health promoting, linked to the reduced risk of coronary heart disease, cancer, diabetes, obesity and other chronic diseases.

Just like because some people have a peanut allergy, doesn’t mean everyone should avoid peanuts. There is no evidence to suggest that following a gluten-free diet has any significant benefits in the general population. Indeed, there is some evidence to suggest that a gluten-free diet may adversely affect gut health in those without celiac disease or gluten sensitivity or allergy. They’re talking about this study that found that a month on a gluten-free diet may hurt our gut flora and immune function, potentially setting those on gluten-free diets up for an overgrowth of harmful bacteria in their intestines. Why? Because, ironically, of the beneficial effects of the very components wheat sensitive people have problems with—like the FODMAP fructans that act as prebiotics and feed our good bacteria, or the gluten itself, which may boost immune function. Less than a week of added gluten protein significantly increased natural killer cell activity, which could be expected to improve our body’s ability to fight cancer and viral infections. High gluten bread improves triglyceride levels better than regular gluten bread, as another example.

Ironically, one of the greatest threats gluten-free diets pose, may be the gluten itself. Self-prescription of gluten withdrawal may undermine the ability to pick up celiac disease, the much more serious form of gluten intolerance. The way we diagnose celiac is by looking for the inflammation caused by gluten in celiac sufferers, but if they haven’t been eating a lot of gluten, we might miss the disease.

Hence, rather than being on a gluten-free diet, we want celiac suspects to be on a gluten-loaded diet. We’re talkin’ 4-6 slices of gluten-packed bread every day for at least a month so we can definitively diagnose the disease. Why does it matter to get a formal diagnosis if you’re already on a gluten-free diet? Well it’s a genetic disease so you’ll know to test the family, but most importantly many people on gluten-free diets are not actually on gluten-free diets. Even 20 parts per million can be toxic to someone with celiac. Many on so-called gluten-free diets inadvertently still eat gluten. Sometimes there’s contamination of gluten-free products, so even foods labeled quote-unquote gluten-free may still not be safe for celiac sufferers. That’s why we need to know.

The irony, editorialized in a prominent medical journal, of many celiac patients not knowing their diagnosis, while millions of non-sufferers banish gluten from their lives, can be considered a public health farce.

To see any graphs, charts, graphics, images, and quotes to which Dr. Greger may be referring, watch the above video. This is just an approximation of the audio contributed by Katie Schloer.

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