Lady LUX

For Lisa*, it started in junior high.

“The pain after eating a meal would sometimes cause me to double over in absolute agony. Eating food caused such severe stomach pain that I often ate as little as possible,” Lisa said. As a result, she was quite thin, at about 100 pounds, even at 5’6”.

Eventually fed up with her problems, she went to a doctor. After a series of tests, he discovered her colon was discolored red, but didn’t know what it was. Many years later, she would find out that it was due to the damage done by undiagnosed celiac disease. Even though Lisa exhibited the symptoms of celiac disease, it was decades before her condition was detected.

“I had all the symptoms, but no one knew enough about it to test me for it,” Lisa explained.

The next step occurred when she developed hives, and doctors decided to explore any possible food allergies. The results revealed that she had celiac. She eliminated wheat from her diet and, voila, saw a vast improvement within a couple of weeks.

“Living with undiagnosed celiac disease is a medical nightmare,” Lisa said. “Living gluten-free is a chore, but my health and well-being have improved dramatically.”

The American Celiac Disease Alliance (ACDA) comes together to help people like Lisa. The ACDA is dedicated to improving the lives of individuals with celiac disease through raising awareness, education, and advocacy and policy work.

Celiac disease, an autoimmune disorder in which patients have a permanent intolerance to wheat protein, is the most common genetic disorder in the world, affecting roughly one percent of the population. It can remain silent in your body for years and strike at any time: it takes an average of six years from the onset of symptoms before a diagnosis is reached. During that time, those patients may have wasted years on money and stress. Raising awareness is key, as celiac can be widely misunderstood.

Celiac disease is different from allergies in that the body is attacking itself, rather than the disease attacking what’s coming into the body. A celiac must scrutinize every single thing that goes into his or her mouth, from lipstick to toothpaste to the glue on envelopes and even everyday foods. Improper labeling and cross-contamination of products can hinder them still.

The ACDA formed when a number of leaders from the celiac community—medical researchers, food manufacturers, support group leaders—began to talk about the need for an organization and united to work on food labeling laws.

The first project tackled by the ACDA was getting allergen labeling passed through the United States Congress, so that celiacs could identify safe products. As a result, new labeling laws required wheat to be listed on food labels. The FDA is currently in the process of developing gluten-free labeling standards. Once those regulations are complete, the hope is that individuals with celiac disease are actually able to identify if a product is gluten-free and know that there are standards.

When a celiac eats something containing gluten, it starts destroying the little fingerlike villi located in the small intestine, leading to a starvation-like process. Celiacs really have to watch it: No amount of gluten is safe; even the most microscopic amount of gluten sets off a chain reaction.

“Within 20 minutes of ingesting gluten, I get stomach cramps, bloating, gas, diarrhea, headache, joint pain and pain in my lymph nodes, as well as tiny, itchy, bumps,” Lisa described. The effects can last for days.

Celiac disease can spell heartbreak for families. The facts are enough to scare you: Without treatment, celiacs can develop Type 1 Diabetes, rheumatoid arthritis, fibromyalgia, severe depression, migraines, osteoporosis and more. But the diagnosis, for many, is welcome after years spent searching for a solution.

Andrea Levario, executive director of the American Celiac Disease Alliance, reports that when her son was diagnosed at age 3 after having ceased to grow, her family was thrilled to have an answer.

When Levario’s son was young, you couldn’t simply turn a product over and identify the allergens; thus wheat was hidden in many cases. Things are changing, but perhaps not enough.

The Food Allergen Labeling and Consumer Protection Act, passed in 2004, required the top eight allergens—including milk, tree nuts, soy and others—to be listed on labels in their common English names. It also required that the FDA develop standards for gluten-free labeling by 2008—standards which still have yet to be finalized.

There is no cure, no pill, and no shot that can cure celiac. The only source of treatment is for individuals to follow a gluten-free diet.

“People don’t grasp that for people with celiac disease, gluten-free products are the equivalent of their insulin ... (It) might as well be a pharmaceutical, because they can’t live without food. Yet it is completely unregulated,” Levario said.

For more information about celiac disease or the work that the American Celiac Disease Alliance does, visit its website at americanceliac.org.

Tagged in: lux exclusives, philanthropy, celiac disease, celiac, american celiac disease alliance,