One day last month, standing in a convenience store in northern Belgium, I decided to join the Nestle boycott. I’ve always tried to avoid Nestle products, but it’s difficult in Europe because they have vast market share. I was standing in the store, wanting some chocolate, looking at a lot of Nestle options. Then I decided to draw the line right there, and picked some gourmet chocolate off the shelf.
I got home and read the ingredients on the chocolate I had purchased, and noticed that wheat flour was on the list. Because I have celiac, I can’t eat anything containing wheat and several other grains that contain a protein called gliadin, which is part of gluten. Gluten makes it possible for bread to rise and hold its shape. It provides that delightful rubbery goodness that wheat is famous for. It’s the stuff in dough that makes it stretchy, for example giving pizza dough the property of being able to stretch thin and still be strong enough to hold the sauce and cheese.
Vegetarians and macrobiotics sometimes eat something called seitan, or “wheat meat”—an extremely convincing, versatile meat substitute that is pure gluten. It is made by taking ordinary wheat dough and rinsing out all the starch.
Gluten is very useful, and it’s difficult to digest. It’s also the probable main culprit in celiac, an autoimmune disease that can damage the small intestines and makes it difficult for people with the illness to absorb nutrients from other food. Celiac is not an allergy; it’s a genetically transmitted immune disorder that affects one in 100 people, often of Northern European descent. Most cases go undiagnosed. Gliadin is found in wheat, old forms of wheat such as spelt and Kamut, rye, barley and malt, and probably oats.
Immediate symptoms include diarrhea, bloating, flatulence, and malnutrition. There are also mental symptoms that can be severe, including both long-term and short-term depression. One’s immune system, which has a lot to do with the state of awareness, feels distinctly out of whack. Kids can suffer from something called failure to thrive, which is the result of their nutrients not being absorbed properly. If left untreated, there can be long-term consequences ranging from epilepsy to cancer.
When I was only a year old, I looked like a refugee kid who had not eaten in months. My mother, with the help of my grandmother Mary and Dr. Benjamin Spock’s Baby and Child Care, figured out what the problem was. Doctors gave her a hard time, but she insisted, and she was right. She spent most of my early childhood fending off what she calls cookie pushers—relatives and innocent bystanders who for some reason loved to hand me bread, crackers, and baked treats. One alcoholic uncle loved to give me beer; he somehow lived to tell the story. Forty years later, she is still incredulous at their stupidity: No matter how many times she explained it, some relatives just did not get it. They also loved to debate which side of the family was to blame, but celiac is passed by a double recessive gene and must therefore come from both sides of the family.
Once you and your doctor figure out that you have celiac, then the fun really begins: Your life becomes a constant obstacle course of avoiding products containing wheat and related grains. What you soon find out is that wheat is ubiquitous, and some of its cousins do a pretty good job. Once you get rid of the basics—bread, cakes, cookies, and most other baked goods, then it’s time to figure out where wheat and its gliadin friends are hidden in the food supply.
Beer, for example, is made of barley; that is a gliadin grain. Beer is easy to identify, but not so easy for some people to avoid. I am lucky—I don’t like the stuff. (Distilled spirits don’t contain gliadin even if they are made from wheat, rye, or malt, because those are taken out in the distillation process.)
Many sausages and frankfurters have wheat filler or extender; you have to read the package, which is often difficult if you’re eating in a restaurant.
Anything deep-fried is suspect; most of it is coated in flour, batter or breadcrumbs. As a result, anything else that goes through the deep-fryer is likely to be contaminated; if French fries don’t already have wheat in them, they may be picking it up from the frying oil.