I have Celiac’s disease. Sometimes I feel like no one knows what it is or how to keep me safe. People ask a lot of ridiculous questions, and I never realized how compulsive some people are about sharing their food until I couldn’t eat it. I’m writing this post in hopes that it is a quick trouble shooting guide to understanding Celiac’s disease.
What is Celiac’s Disease? Celiac’s Disease is an autoimmune condition like Lupus or Crohn’s Disease. It never goes away. The cure for Celiac’s disease is to go on a gluten free diet, but many people still have symptoms and chronic illness even after they stop eating gluten. Gluten is a protein found in certain grains. When a Celiac ingests gluten, their body makes antibodies. Instead of those antibodies attacking a virus or gluten, they attack the lining of the intestine that is responsible for absorbing nutrients and digesting your food. This is why many Celiacs are vitamin deficient.
Is Celiac’s disease the same as a gluten or wheat allergy? Is it a gluten intolerance? No and no. Celiac’s disease is an autoimmune condition, which is permanent and destroys the intestine. It is measured and diagnosed by testing the blood for IgE and IgA, immunoglobulins responsible for the intestinal damage. A gluten or wheat allergy is when the body makes histamine in response to the protein, which can cause hives, upper respiratory distress like itching and asthma, and even death by anaphylaxis. Gluten intolerance is like lactose intolerance, in which a person doesn’t have sufficient enzymes to digest the gluten protein. There are gluten intolerance pills on the market, but I’m unsure as to their effectiveness. People with gluten intolerance are not harmed by mild cross-contamination in most instances, and they do not get dermatitis herpitaformas blisters, nor do people who are allergic. Dermatitis herpitaformas is specific to people with Celiac’s disease, but not all Celiac’s have it.
What foods contain gluten? Gluten is a protein found in wheat, rye, spelt, barley, and a few other grains like Einkhorn that aren’t very popular, and in regular oats. Oats must be certified gluten free because they’re often cross-contaminated during harvest or processing. Unfortunately, many foods can unexpectedly contain those items, and especially contain wheat. Obvious foods containing gluten are bread, pasta, cereal, crackers and pretzels and baked goods containing wheat flour. Some foods that might surprise you as containing gluten are seasonings and dressings, dips, personal care products like shampoo and lotion, beer, some chips, soups and broths, strawberries (are grown in straw which contains gluten), luncheon meats, soy sauce, icecream, granola bars, some fruit snacks, and many others.
What is cross-contamination? Cross-contamination happens when a food or grain containing gluten touches a food without gluten, or a surface that gluten free food touches. Examples of cross-contamination are sharing a toaster, splattering in a microwave or oven, sharing porous surfaces like plastic or wooden dishes or cutlery, steam from pasta cooking, cooking with wheat flour in a gluten free kitchen, sharing a strainer (they’re impossible to get clean), sharing a bread maker, re-dipping a knife into mayo, pb, butter, etc. after touching the knife to gluten containing foods like bread, kissing or holding hands with someone who has eaten gluten, eating icecream from a place that puts ice cream on cones (from the scoops touching the cones), touching a gluten containing food and then touching a gluten free food, etc. A person with Celiac’s disease is usually only safe eating from their own kitchen, but there are rare exceptions. When explaining cross-contamination, the metaphor that I use is to imagine that the gluten containing food were covered in blue paint. Obviously, anything that food touches or that you touch will get covered in blue paint. The blue paint represents gluten.
What special foods do Celiac’s eat? Celiac’s don’t live off of just fruits and vegetables. In fact, foods like rice, beans, tofu, corn, potatoes, and produce are naturally gluten free. Some special foods for Celiac’s are things like rice or corn pasta, gluten free english muffins or bagels, gluten free pies and cakes, gluten free cereal, gluten free condiments, gluten free cookie dough ice cream, gluten free hamburger or hot dog buns, gluten free pretzels, and gluten free candy, but there are many more things on the market. Distilled alcohol is gluten free, but there is gluten free beer as well.
What happens if you eat gluten? In addition to destroying the lining of my intestine, Celiac’s usually display a variety of both short and long term symptoms. Short term symptoms include severe vomiting or diarrhea, severe stomach pain, eczema, blisters called dermatitis herpitaformas which are very painful and itchy like chicken pox, brain fog, mood swings, extreme fatigue, migraines, reflux, gas, and body aches. Everyone is different, but long term side effects can include hair loss, weight gain or loss, sleep irregularities, changes in appetite, vitamin deficiency including anemia, infertility, major organ failure, and even death or cancer.
Someone I love was diagnosed with Celiac’s disease, what can I do to be supportive? Don’t try to feed them. If you cook for them, you’re likely to make them sick because your kitchen is coated with gluten. The most supportive things my family has done for me was to buy me gluten free goodies like snacks and to help me replace my gluten coated kitchen items. I’ve also had friends come to help me scrub my kitchen (gluten comes off of non-porous surfaces with soap and hot water). Living Without is a great publication on gluten free and other dietary needs. Try to hang out with that person in settings that don’t involve food, and don’t be offended if you invite them over for dinner and they bring their own. It’s ok to invite them to parties or dinners, but preface with, “I understand you have special dietary needs, but I don’t want you to feel excluded. I would understand if you don’t want to come, but I’m open to helping to buy or prepare food that you feel comfortable eating or helping me prepare.” Sometimes a Celiac may decide to skip out, because let’s face it, who wants to go to a party and have to prepare everything- they might as well stay home and relax! Also, while some places may say their food is gluten free (like restaurants), your Celiac loved one may be skeptic, and it’s a good idea to call ahead of time to make sure they’re not going to be exposed to cross-contamination.