Blog Post: Why Celiac Disease Is A Political Issue

NFCA Celiac

NFCA Celiac

CeliActivism: Why Gluten Intolerance is a Political Issue

When people learn that I have celiac disease, their response is usually what can best be characterized as one of, well, horror. “Oh no! That’s terrible! What do you eat?” No bread, no pizza, no beer? How can a person survive?

Luckily, people are slightly more likely to have heard of gluten intolerance—or to know someone who has it—than they were even five years ago. Back then, people just used to look at me like I had six big, ugly heads. Despite improved awareness, though, I still don’t hear the a key aspect of gluten intolerance being discussed—not by celiacs, public health advocates, food activists, farmers, vegans, Whole Foods shoppers, or organic gardeners. It’s the fact that celiac disease is a profoundly political issue.

To explain why this is the case, I’d like to begin by thinking abou ta few, well, categories of the horror my revelation tends to produce. A few of the most common:

A)  Celiac disease? OMG! You are a freak of nature condemned to a life of donut-less misery.

B)  Wow, that’s too bad. I’m sure glad I don’t have that problem.

C)  Honestly, you are a hopeless neurotic. This gluten stuff is just another fad. (What? You’re also vegetarian? For ethical reasons? Come on! How picky can one person be?)

Other celiacs, will, I know, be familiar with this, er…. menu of reactions.

Because they all tie in with my larger point, I want to think about each of these responses in turn. First of all, there’s response A). I have to say in reply that gluten intolerance isn’t that bad. Really. It’s not as if I have a degenerative illness: all I have to do is avoid gluten-containing foods. In contrast to 30 or even 15 years ago, when a diagnosis of celiac disease condemned you to a life of pot roast, potatoes, and gluey rice pasta, it’s now possible to buy gluten-free goods of all kinds. Ok, I miss baklava. Barring that…I can get almost anything I want. Even bagels.

In fact, I eat very well. Despite the fact that all those gluten-free goodies are available, I mostly don’t eat them. They can be expensive and not that healthy.  For instance, many gluten-free foods contain a lot of fat to make them seem like replicas of gluten-containing foods. But when you eat fresh foods, and when you stop expecting your food to be exactly like the food you ate before, avoiding gluten is not that hard.

Why do people think gluten intolerance is so terrible? First, they’re used to processed convenience foods. They can’t imagine life without Pop Tarts, Cinnabon, and Lunchables. Second, they fail to realize that it’s largely the additives, and not the food itself, that are the main problem. Many people tell me they’re “avoiding gluten” by not eating bread. According to a recent consumer survey, gluten-avoiders now make up fully one third of the American public. I applaud their intentions, but, alas, not their level of attention.

Unfortunately, what most people who are attempting to avoid gluten miss is the component of food additives. Food starch modified, barley malt, and “natural flavors”—all of these ingredients can blindside people who think they’re going gluten-free. It’s amazing how often you have to read the label to make sure that food you thought was safe really is. By way of examples, here are a few of the gluten-containing processed foods most people don’t think twice about when they “avoid gluten”: Twizzlers (wheat flour), Rice Krispy Treats (barley malt), Campbell’s Tomato Soup (wheat flour?!), granola bars (oats), french fries (cross-contamination with those onion rings from the fryer), soy sauce (wheat flour), pre-shredded cheese (flour coating to keep it from sticking), and hot dogs (wheat-based filler). It’s not just about the bun, folks. But avoid processed foods—or at least read the label—and it’s pretty hard to get tripped up.

As a result of avoiding processed foods, my diet is my healthier than the average American’s, and my palate is much wider. I eat Thai, Indian, Middle Eastern, Japanese, and Vietnamese food with enthusiasm. Sure, they may serve bread, but these cultures and cuisines don’t rely on gluten as a key additive the way the typical American diet does. There are in fact a plethora of other grains out there, and these cuisines use them. In Kenya I had amazing bread made from cinnamon, cardamom, and steamed rice; in India, bread made from millet. Ethiopian cuisine uses teff, a tiny, nutty grain, to make the bread staple, injera. Even when I was in France, that bastion of yummy baked goods, I didn’t have much of a problem. I ate fresh potatoes, salad, and even a bite of pâté from a wild boar my friend’s father had hunted. The food was fresh. It was delicious. Far from feeling like I had missed out on wonderful eating experiences, I feel like I’ve had more of them. In this sense, gluten intolerance isn’t a disease. It’s an opportunity.

Response B)—”glad it’s not me!”—also deserves attention. The fact is, it might be. As a recent New York Times article points out, more people who aren’t necessarily celiacs are becoming aware that they may have gluten sensitivity. This could be due, in part, to the increasing presence of gluten in our food supply. Did you know that bread is now being produced using wheat strains that are genetically modified to contain more gluten? I didn’t. For goodness sakes, with a third of Americans avoiding gluten, why? Because gluten gives bread its springy texture and makes shipped bread last longer. Thanks a lot, GMO grains.

Not to sound the alarm bells, but I with reference to response B), I also find that people are woefully under-informed about the symptoms and prevalence of celiac disease. Consider the following statistics, from the National Foundation for Celiac Awareness website:

  • One in 133 people in the US has with celiac disease. That’s three million.
  • By a conservative estimate, 85% of people suffering from celiac disease aren’t diagnosed. And a typical diagnosis still takes 6-10 years.
  • Celiac disease doesn’t necessarily present in the form of gastrointestinal upset. It can show up as symptoms including dermatitis, chronic canker sores, stunted growth, mental confusion, and bone pain, to name a few. Common misdiagnoses include chronic fatigue, fibromyalgia, failure to thrive, and rheumatoid arthritis.
  • It’s also possible not to have any noticeable digestive symptoms. This was the case with my sister-in-law, whose antibodies were off the charts when she finally got her test results.
  • Whether or not you’re symptomatic doesn’t matter. Celiac disease damages your intestine and leads health problems over time. It can even cause other food issues, such as lactose intolerance. Over time, celiacs become more and more malnourished and frail, which is why many aren’t diagnosed until they’re in their eighties.

All right, you say, maybe I’ll get tested. But a little bit of gluten won’t hurt. That Rice Krispy treat you mentioned doesn’t have much gluten…right?

This response is strongly tied to celiac-response C): Celiacs and our ilk are just being neurotic. I know it seems that way, but we have our reasons. Consider that in Canada and Europe, the federal safety level for gluten is twenty parts per million. Now imagine that you have one million M & Ms. Of those million, most are blue but twenty are red. It isn’t many. But you can’t tell which is which, because these M & Ms are very, very tiny. Could just a handful make you sick? Unfortunately—and I know this from experience—yes.

All these responses bring me to my point that celiac disease is not just a private dietary issue. Long ago feminism taught us that the personal is political, and that’s the case here too. Celiac disease is political because it entails close scrutiny of what’s in our food supply. Not just what, but why. Why on earth aren’t oats, a gluten-free grain, considered safe for celiacs? Because the fields where the oats are commercially grown and the industrial machinery used to process them are hopelessly contaminated with wheat flour. You won’t find this gluten on the list of ingredients, but if you’re a celiac, you know that a packet of Quaker oatmeal, or even the wrong corn chips, can seriously mess you up.

While we’re asking why all that gluten is there, let’s also ask why we don’t know about it. Manufacturers aren’t likely to volunteer this information if they don’t have to. And the American public is not trained to read food labels. Unless you’ve had to deal with a dietary problem, you are probably only dimly aware of the number and type of additives in the American food chain: extra sodium, food starch modified, food coloring, sulfites, high-fructose corn syrup—these unhealthy ingredients are only necessary for the production of food meant to be packaged, shipped, stored for long periods of time, and thoughtlessly consumed by a public that has been carefully primed to want them. In case you missed it, a recent exposé on the deliberate engineering of addictictive junk food recently appeared in the New York Times Magazine. I’ve often joked that if I had to make a bomb shelter, I’d construct it out of two indestructible substances on the planet—Cheez Whiz and Twinkies. Gross, right? But let’s face it—this food doesn’t spoil. It’s nearly indestructible because it’s dead.

The fact that we are unaware of what’s in our food goes even deeper, though. Many people are so divorced what they eat that they don’t understand what their food is. We don’t read labels; beyond this, we don’t understand how our food is made or what it’s made from. As a celiac, I’m astonished by the nunber of people who don’t understand that bread is made from wheat. (Astonishingly, so is pasta). A few weeks ago, I dined out at a well-known Chicago restaurant that prides itself on its use of fresh, organic ingredients. Although I told my server I’m gluten intolerant, she still offered me a beer list and, worse, my salad arrived with a big piece of bread in it. I didn’t want to be that person, (see response C), so I carefully removed the bread and ate the salad. Last week, a server at the Chicago Diner, a well-known vegan restaurant, served me a “gluten free” taco salad containing “chorizo” made from seitan. That’s concentrated wheat gluten. Again, not wanting to be that person, I waited until halfway through my salad to ask, just to make sure, what those tiny bits were. Remember those 20 parts per million? In spite of my best efforts, both of these salads made me sick for three days after I ate them.

With more and more people developing gluten sensitivity and recognizing gluten intolerance, we need to take our analysis beyond simple awareness, to the level of political activism. Call it celiactivism. As an alternative to the set of reactions I detailed above, I propose the following:

A) If you’re a celiac, or if you know a celiac, make people aware of it. Don’t accept the “freak of nature” reaction. Don’t shut up and eat the salad that’s going to make you sick. We can take our cue here from people who’ve raised awareness about diabetes, cancer, and any number of health issues. We too deserve to be taken into consideration, even if, at times, it seems a little over the top.

B) Whether or not you have gluten issues, educate yourself about what’s in your food and question why it’s there. Get in the habit of reading the label. What do all those different ingredients do, and what are they for? Check the ingredients, Google them if you’re curious, and pay attention to how you feel—you might find you have a different kind of food issue you didn’t even know about. This is a simple place to begin. Of course, eating fresh, non-processed food and cooking for yourself if and when you can is also wonderful on many levels.

C) Pressure corporations to remove gluten and other harmful additives from our food supply. Like diabetes, celiac disease is common and gluten sensitivity may be on the rise due to what’s in the food we are already eating. Better yet, for those who can, let’s refuse to eat these ingredients. Instead, let’s grow our own food, buy organic, learn to forage—or at least, eat fresh vegetables.

To all this, and since many readers of this blog will already be on board with the points above, I’ll add response D).

D) Let’s forge links in the food justice conversation. Celiac disease and other food intolerances are as much issues of health and food justice as becoming vegan, combating obesity, growing food locally, or building sustainable gardens. It’s about what they’re feeding the American public and how we will empower ourselves.

2 thoughts on “Blog Post: Why Celiac Disease Is A Political Issue

  1. Hey! This is my first comment here so I just wanted to give
    a quick shout out and tell you I truly enjoy reading through
    your posts. Can you suggest any other blogs/websites/forums that
    deal with the same subjects? Thanks a lot!

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