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How Scared Should I Be of Gluten?

You'll be fine if you don't have celiac disease, but did you know some people have "silent" celiac disease, and it can chip away at their health for years?

by Mike Pearl
Nov 6 2015, 6:45pm

Photo by the author

In the column "How Scared Should I Be?" VICE staff writer and generalized anxiety disorder sufferer Mike Pearl seeks to quantify the scariness of everything under the sun. We hope it'll help you to more wisely allocate that most precious of natural resources: your fear.

There's a scene early on in the 2013 horror movie/fart comedy This Is the End where Seth Rogen explains his gluten free "cleanse" by saying "Whenever you feel shitty, that's because of gluten," then he admits he doesn't know what gluten is, and blows his commitment to the ways of the gluten-free by eating a burger. Here in Los Angeles, that pretty much covers the general attitude toward foods contaminated with gluten: They won't kill you, but if you can steer clear of them, you'll feel somehow better, even though most of that feeling comes from smugness.

Is gluten really a contaminant? Nope. It's just a protein that the reproductive part of a wheat plant creates in order to feed the budding wheat embryo—the part of the wheat plant we eat. You can extract gluten by washing flour until all the starch is gone, and only a sticky residue is left behind. That sticky residue can be formed into big chunks of gluten, which come in a can, and are used by my local Vietnamese restaurant as a substitute for poultry meats, called "mock duck," and I could eat that stuff all day.

But if you have celiac disease, you should avoid mock duck like the plague. Celiac disease is "an autoimmune disorder that can occur in genetically predisposed people, where the ingestion of gluten leads to damage of the small intestine," Talia Hassid, public health expert and community coordinator for the Celiac Disease Foundation told me in an interview.

The general belief with celiac disease is that a big, gluten-heavy meal is a formula for a couple days of cramps and shitting yourself. Hassid told me that's generally true in children, but less so in adults. "Adults have a completely different set of most common symptoms, including headaches, brain fog and joint swelling," she said, adding that the neurological nature of those symptoms means adults with celiac disease are "even more difficult to diagnose, because most people don't know to associate that with what you're eating."

I get symptoms like headaches, brain fog and joint swelling—who doesn't? On the off chance that I had celiac disease, I decided to cut out gluten for a week, and see what effect it might have on my life. After all, according to Hassid, "83 percent of people with celiac disease are undiagnosed." It's estimated that celiac affects about one out of 100 Americans. For reference, death by gun affects about one in 365 Americans. Statistically, my odds are much better of having celiac disease than being shot to death, but how scary is it?

"The amount of gluten that can fit under your pinkie finger nail. That can make someone with celiac disease sick," she said.

But how sick?

After a mysterious bout of illness that looked like it might kill him in March of 2013 Jeff Hurst, a retired store clerk (and in the interest of full disclosure: my uncle) found out that decades of gluten consumption had been quietly devastating his health for years.

He calls what he has "silent celiac." He shows no outward symptoms when he accidentally eats gluten, but looking back he feels pretty sure he could tell something was wrong for years. "20 percent of people are asymptomatic, so they continue to eat gluten," according to Hassid, and while that's going on, it's "wreaking havoc on the insides," she said, adding, "Even if you're not feeling bad, you're still doing badly."

"I can see evidence that I was getting worse over the course of several years but since I wasn't having any obvious distress I didn't know it was serious," Jeff said. He blithely ate bread, pasta and other gluten-stuffed food for over five decades, only suffering any symptoms in his fifties.

One of the biggest problems preventing diagnoses is a knowledge gap about diarrhea. Had Jeff known it was gluten that was making him feel lousy over the years, he still wouldn't have had celiac's supposed trademark symptom: diarrhea. It was 2013—the height of gluten mania—and saying gluten was making him feel weak back then would have made him sound less like a serious celiac sufferer, and more like one of those people you roll your eyes at when they say they have a "gluten sensitivity."

The idea of "gluten sensitivity" is the bete noire of many an armchair public health expert. In May of 2014, an Australian study found that it was likelier that a particular carbohydrate called FODMAP was to blame for the symptoms believed to be gluten sensitivity. Consequently, The Mayo Clinic website says "there is no scientifically valid test to diagnose non-celiac gluten sensitivity, and research is under way to develop one."

That backlash led to many people dismissing the whole idea of non-celiac gluten sensitivity, when actually, the jury's still out on that. In any case, Hassid said, regardless of the symptoms, the difference between "sensitivity" and celiac disease is simple: "someone with gluten sensitivity doesn't have the gene."

My uncle Jeff—who has the gene—got much worse over the course of 2013, and then the symptoms got weird. "Nothing tasted good," he told me. He also had to take frequent breaks while doing normal things like walking. He became quiet and withdrawn at family gatherings.

Then it got scary.

He couldn't function, and started fainting, so finally he was admitted to the hospital. "I came down with a cellulitis infection of my leg," he said. "The cellulitis went up my leg from my foot to above my knee over the course of about three or four days." Then he started fainting, and finally went to the hospital. "I had kidney failure, fever, severe pain, a catheter. You know, fun stuff," he said.

According to Dr. Daniel Leffler, Director of Clinical Research at The Celiac Center at Beth Israel Deaconess Medical Center, this isn't unheard of. "Hospitalization due to very severe celiac disease is rare but occurs in about one percent of people who get diagnosed with celiac disease," he told me.

"His case is very dramatic, but most cases of celiac disease are," according to Hassid. "Most people are sick for years, and are struggling for years, before they get the simple blood test, and get diagnosed," she said.

The kidney problems and infection that coincided with Jeff's celiac attack appear to be pretty unusual, however, according to Leffler,"Any severe malnutrition can lead to immune compromise because the body does not have the resources to keep the immune system active. Again, this is rare in celiac disease but can occur."

With Jeff's health in decline, and his symptoms still mysterious his family waited around like bit players in an episode of House before the diagnosis finally came. My mom was one of the people in that waiting room. She sent me a series of texts: "As of late last night, still no answers about Jeff's condition. Has received seven pints of blood but continues to lose blood. Leg infection seems a little better. Hopefully better news today. Please continue to keep him in your prayers."

Then his blood test revealed celiac disease and doctors finally had a culprit. When he was topped up with blood cells and told to lay off the gluten, he started improving "It's amazing what oxygen will do for you!" he said, although he says the residual pain lasted for months.

Hassid told me the recovery time for people who've just had such an episode varies wildly. "It can be anywhere from a couple weeks to two years," she said.

But once it's under control, the worst things about gluten sensitivity, assuming you don't wind up in the hospital, is all the times you'll have to irritate waiters, and having strangers roll their eyes at you. But according to Hassid, "You have to be very inquisitive to get a safe meal."

I asked Hassid if—in the light of my headaches and occasional swollen joints—I should get the blood test for celiac. "It could literally be anything. I would recommend a Celiac blood test, along with a whole panel."

Then she gave me a very puzzling instruction: "Get back on the gluten."

If you think you have gluten problems, you're not supposed to get off gluten, according to experts. You're supposed to get tested instead. And if you've already dropped the gluten, and you suddenly want to be tested, the test won't work unless you start eating gluten again.

The point is that if you have celiac disease, the course of action really has nothing to do with whether you're asymptomatic, or you have a foggy mind, or you're getting headaches, or you're shitting your pants, according to Hassid. In fact, in 2013, researchers found that one third of Americans were "trying to cut back," but according to Hassid, those among that third who actually had celiac disease, weren't doing much of anything at all by cutting back. They needed to cut it out.

"Even if you're not experiencing symptoms, it's still damaging your intestines," Hassid said.

Final Verdict: How Scared Should I Be of Gluten?

2/5: Taking Normal Precautions

Follow Mike Pearl on Twitter.

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