Living with Celiacs Disease
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LIVING with Celiacs Disease:
Part 1-The Disease and Treatment
Written by: Stacey Louiso
Twenty years ago barely anyone in the United States had ever heard of Celiac Sprue Disease (Celiacs for short). If you don’t know what it is let me explain: it’s an intestinal/autoimmune disease. It is often the culprit of food related allergies, skin and weight issues. Celiacs is the small intestine’s inability to digest gluten, or the proteins (Gliadin), in certain grains—specifically wheat, barley, oat and rye and spelt. The body thinks of these proteins as a toxin trying to attack it, thus causing a war between the intestines and the food.
An estimated 1 in 100 people in the US have the disease. An estimated 1 in 4,700 are either undiagnosed or misdiagnosed. You are at higher risk of carrying the genetic marker for Celiacs if your heredity is European (Ireland down to Italy-where the estimates of population with Celiacs is 1:55). It is not common in Asian or African countries.
What happens when someone with Celiacs ingests gluten? How do you know if you, or someone you know has the disease? To begin, a basic description of what happens inside the intestines: Firstly, the entire body sort of rebels against itself. The digestive system can do one of two things-shut down or go into overdrive. A biopsy will show the villi in the intestines breaking down, causing symptom after symptom including but not limited to: diarrhea, nausea, skin disorders, weight control, chronic fatigue, emotional distress, food sensitivity, “brain fog”…and the list goes on. The villi flatten and cause malabsorption; the villi’s main job is to trap and move nutrients along the intestinal tract for absorption into the blood stream; which cannot occur if they are damaged or flattened.
Elimination/reintroduction diets are often prescribed in order to further determine what the body is reacting to. This is the process of eliminating foods and other products from one’s diet, abstaining from them for about thirty to forty-five days and then reintroducing the foods, one at a time, to the diet and watching for reactions such as rashes, bloating, and irritated bowels, among others.
Studies show Celiacs is hereditary. The problem with this being the disease can lie dormant for years with no understandable symptoms; it can show itself quite suddenly and severely brought on by illness or stress. Celiacs can be apparent from infancy and it often perplexes parents who cannot figure out why their child is not gaining weight, has constant diarrhea, a bloated abdomen and listlessness.
Unfortunately, there is no known cure for Celiacs. The only true treatment is changing your lifestyle—seriously, you will have to change your entire way of living. The food you buy, the hygiene products you use, your cookware and amount of exercise you get. Why? Because gluten hides everywhere, in many shapes and forms; it is not only what goes into your mouth you have to watch for, but anything that can enter your bloodstream. This is a fact often left out of media coverage of Celiacs, which has gained momentum over the past eight years.
Let’s start with the obvious culprit: food. The main source of gluten is found in the following grains: wheat, barley, rye, spelt and oat (don’t let them fool you, oats contain gluten-though there is a genetically modified type which supposedly does not, on the market now). BUT-these grains are found in everything from beverages to shampoo, thus if a person has Celiacs they have to learn all the names and pseudonyms for all things glutinous.
Some Celiacs (what those with the disease also affectionately call themselves-oh yea, you will grow to have a sense of humor about the disease as well) have other challenges beyond gluten. The severest cases can have additional food sensitivities or allergic reactions to items such as dairy, eggs and foods containing yeast.
There are tons of on-line resources containing information on Celiacs; some of the more comprehensive sites include:
There are also a multitude of books on the market that can be found in both the nutrition and cooking sections of bookstores and health food stores nationwide and online. Many grocers and health food/natural foods stores have also begun to mark shelves so people can easily spot gluten-free foods. But, that doesn’t mean you should stop reading labels and educating your-self on items containing gluten and what secret ingredients (additives, preservatives, etc) are forbidden to those with Celiacs. The FDA is finally requiring foods containing allergens and gluten, to be labeled as such.
Some of the on-line resources for recipes and shopping are great but don’t offer a list of alternate ingredients for people who react to other foods. Some of the better resources include:
The best solution is to eat fresh, unprocessed foods and stay away from prepared items (frozen dinners, lunch meats, etc) unless it says gluten free AND you read the ingredients. Here is a short list of items to be aware of:
Artificial flavorings, Caramel color, Colorings and dyes, Dextrins, Emulsifiers & softeners, Hydrolyzed plant protein, Hydrolyzed vegetable protein, Malt Vinegar, Mono- & di-glycerides, Natural flavorings, Preservatives, Spices (anti-caking agents), Starches and modified food starches.
As mentioned earlier, gluten is not only in the food you eat, but the products you use everyday such as: shampoo and conditioner, lotions and body washes, soaps and are even in supplements and medications. The good news: There are gluten free products available at many health food stores and some grocery and specialty stores.
Several brands that have gluten free products including (not all products so read the labels):
Desert Essence www.desertessence.com (DE has a gluten free line of beauty items)
Country Life (supplements) www.country-life.com
Afterglow Cosmetics www.afterglow.com
There are many other products out there that can fulfill your gluten free needs. You will need to free yourself from the junk food, bread and cereal aisle until you have gained the self-control it takes to LIVE with Celiacs. Eating out is a huge challenge as well; you must learn and not be afraid of asking questions and telling your waiter or waitress or host that you have Celiacs or food allergies. If you do this they will take you much more seriously.
Some restaurants cater to gluten free needs, even several national chains such as Outback Steakhouse, Bonefish Grill, Carrabba’s Italian Grille and PF Chang’s, offer a gluten free menu. Café Gratitude in the San Francisco Bay area is dairy and gluten free and raw. There are several offerings in NYC as well. Any salad bar can provide you a nutritious option (just avoid the dressings and croutons and opt for oil and non-malt vinegar). You can find more gluten free restaurant offerings at: www.glutenfreerestaurants.com.
Living with Celiacs, honestly, is not very difficult after you get used to it. There are always those favorite food temptations, but for your health and conscience, please step away from the muffin bin, dessert tray and Hershey’s stack and choose an alternative you and your gut, can live with.<b>
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