One thing about celiac disease: when it’s affecting your family, you quickly become an expert on the subject. This is good, because everyone and their brother will ask questions! Below are some of the most common inquiries my wife (and I, in turn) hear.
Q. Is celiac disease the same as gluten intolerance?
A. No. A gluten intolerance means you react to gluten (wheat, rye, and barley). Celiac disease is an autoimmune disorder. Someone with a gluten intolerance may be able to handle some gluten, although this is not a hard and fast rule. Individuals with celiac disease should not eat any gluten, period.
Q. Is it contagious? Is it genetic?
A. Yes, one bite from a celiac and you’ll be going around moaning “gluten free, gluten free…” Just kidding. Celiac disease is NOT contagious. It is genetic, which means if your brother, cousin, or another blood relation has it, you may be at risk.
Q. Does it go away?
A. Nope. You can’t outgrow or reverse celiac disease. Think of it this way: there’s a little “gluten” gene inside some people. If the gene is turned “on,” they develop celiac disease. Once it’s turned on, it can’t be turned off. This means that a 20-year-old who was just diagnosed and an 80-year-old who’s had their gene “on” for three decades are equally at risk of gluten contamination.
Q. How much gluten can your wife safely have?
A. My wife can have exactly no gluten. Industry standards vary, but as a general rule worldwide, if a product has more than 20 parts-per-million that are gluten, it cannot be labeled gluten free. This makes cross-contamination (gluten foods coming in contact with gluten free foods) a real issue. We buy oats that are grown separately from other grains and tested for gluten.
Q. So, if I eat wheat and touch your wife’s food, will she get sick?
A. That depends. Again, it has to do with cross-contamination. In my wife’s case, she can be around gluten (our parents’ homes are not gluten free); she just can’t eat it. Some individuals are more sensitive and avoid even touching things like bread or breakfast cereals. Many celiacs can share a gluten kitchen; they just make sure to have their own utensils, pans, peanut butter jar, etc. When in doubt, ask.
Q. How do you eat? (The polite way of asking, “how do you survive!?”)
A. Pretty well—my wife’s a great cook. Seriously, we can still eat lots of “regular” foods. Yesterday, for example, we had chicken curry over potatoes. Delicious! Some celiacs will develop an intolerance for casein, a component of most dairy products, and have to avoid dairy as well. Overall, however, we eat lots of fruits and vegetables, other grains like corn or rice, meats, and legumes. There’s also a thriving gluten-free market of breads, rolls, granola, etc., although they are usually more expensive than their gluten counterparts.
Q. Where do you shop? Is it expensive?
A. We shop at the usual grocery store chains (we frequent Costco and visit Wegman’s and ACME occasionally), along with Trader Joe’s and other natural or health food stores. We don’t shop at stores that are unhelpful when we ask about any possible gluten contamination. (I’m looking at you, ShopRite.) Bread replacements are expensive, but the majority of our food doesn’t cost any more. Apples, for example, are gluten free regardless of price, but cheaper at our farmers’ market. A friend introduced us to a nearby discount grocery store and it’s kept our food budget much lower!
Q. So… Can you eat at my house?
A. Probably yes—with good communication! If you’re trying to cook gluten free for someone, the best route may be to invite them to cook with you, so you understand exactly what their needs are. When that’s not possible, ask questions. Celiacs would rather explain their specific dietary restrictions and food preparation needs than offend you. Gluten contamination is a high price to pay. Let me put it this way. Have you ever had the flu? Headache, nausea, possibly vomiting, feeling sick all day, super tired, achy? For someone with celiac disease, one little iota of gluten could mean hours or days feeling like that. Worse, it means damage to the digestive tract that could take weeks to heal. Eating around gluten is possible—many celiacs live with shared gluten/gluten free kitchens, they just have to keep their food items gluten free. Again, ask questions.
Q. So, what happens when your wife eats gluten?
A. When gluten enters the digestive tract of a person with celiac disease, an antibody is created to fight it. This same antibody also attacks the small intestine’s surface. Without the nutrient-absorbing properties of the small intestine, the body starts losing nutrients instead of gaining them.
Q. How did you find out about it?
A. After giving birth to our son, my wife began having stomach pains, headaches, and constant hunger. The hunger didn’t particularly surprise us: she was nursing our son, so “eating for two” was expected. When she was still feeling sick 6 months later, however, we began to wonder if there were other factors. She’d also lost too much weight postpartum. Nearly a year after she gave birth, we asked our doctor to test her blood for celiac disease. The results came back positive (sky high, in fact), so we immediately began cutting gluten out of her diet. (On hindsight, she should also have had an endoscopy to confirm the diagnosis before cutting out gluten; we wish our family doctor had suggested it. Live and learn.) Eating gluten free gave her some immediate symptom relief, and gradual healing.
Q. How common is celiac disease? Should I be tested?
A. Around 1 in every 133 Americans, or about 1%, have diagnosed celiac disease. The peanut allergy rate for the U.S. is also around 1%, for comparison. You should be checked for celiac disease if you have a close relative who has it, or if you have the symptoms. (And remember that I’m not a doctor, so don’t take my word for it, but look into it yourself.) A word of warning: don’t assume you have celiac disease without being tested. You might have some other serious condition that should be treated differently. Also don’t let your doctor assume you don’t have celiac disease if you’re showing symptoms; even doctors can make mistakes. If you suspect you have it, don’t go off gluten until after you’ve been tested, or you might get a false negative.
If you’ve got a question to add, comment below. Also feel free to share any experiences with living gluten free.