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Three years ago, my sister got a severe flu during her senior year of high school. Even days after the flu symptoms passed, she felt sick after every meal. My parents took her to several doctors who labeled the symptoms as acid reflux and a slow emptying of the stomach. She tested various medications for months.
"Finally, we went to a nutritionist who diagnosed me almost on the spot with Celiac Disease," Carly Fabris, now 20 years old, said.
Celiac Disease is an autoimmune disorder revolving around gluten. Those plagued with the disease cannot properly digest gluten, which is found in wheat, flour, barley and rye. According to the Celiac Disease Foundation, when those with CD ingest gluten, the villi on their small intestine are damaged, which renders them incapable of digesting basic nutrients necessary to a healthy lifestyle.
Many confuse CD with an allergy to gluten or gluten intolerance, but it is an autoimmune disease, so it is impossible to outgrow like allergies. Even though one out of 133 people in the United States are affected with the disease, according to the CDF, it is often misdiagnosed or not diagnosed at all.
"We just have been very bad at finding it until recently, so it is diagnosed less in the United States," Kelly Dorfman, a nutritionist and dietician in Maryland, who diagnosed Fabris, said. "The Europeans and Australians have been much better at catching it than we have been, unfortunately. One study found the average time until diagnosis here in the U.S. was 11 years."
Heather Goodwin, a Spanish teacher at Stone Bridge High School has learned to live with the disease since October 2007. She had digestive problems for a long time and thought she caught something while traveling abroad over the summer.
"Since my grandmother has Celiac Disease as well, I asked if I could be tested for it," Goodwin said. "The doctor was doubtful that it was what was causing my problems, but she agreed to test me anyway. After the blood test and endoscopy the diagnosis was confirmed."
CD is difficult to diagnose because its symptoms are not always obviously gastrointestinal. There are multiple symptoms that indicate CD, and not all of them obviously point to the autoimmune disease. According to the CDF website, classic symptoms are generally related to digestion; these are the more obvious symptoms. More unexpected symptoms include osteoporosis, delayed puberty and mouth ulcers, among others.
Dorfman heard Peter Green, head of the Celiac Clinic at Columbia Presbyterian Hospital in New York, say the main reason many doctors hesitated to diagnose the disease is because there were no drugs to treat it and it's not easy to identify. An endoscopy is usually required, which involves inserting a tube down the throat and into the small intestine while the patient is sedated.
"There are some tricky technical problems when trying to diagnose CD with an endoscopy," Dorfman said. "As a result, the samples do not consistently find the disease even when it is present."
Oftentimes the results of the test for the disease are not conclusive, she added. The first time my sister was tested for the disease, it came back negative. Still, her doctor said she was positive that she had the disease.
"[Dorfman] said that I needed to take wheat, barley and rye out of my diet," Fabris said.
CD can also be difficult to diagnose because it can be contracted seemingly out of nowhere, as my sister experienced. For many adults, the disease can be triggered for the first time after surgery, a viral infection, severe emotional stress, pregnancy or childbirth, according to the CDF.
The most important thing that those who suffer from CD must do is read all food labels and ask questions about every food before they eat it, Dorfman said. "Those with CD cannot just cut down, they have to avoid gluten completely. That means all foods with wheat, rye, spelt and barley. Every label must be scrutinized and going out to eat can be a minefield as sufferers are often given wrong information and then pay later."
Goodwin recommends Wegmans brand food, which is clearly labeled if it is gluten free. Loudoun County also has restaurants that serve gluten-free entrees, including Manhattan Pizzeria, Fire Works Pizza and Ford's Fish Shack, among others.
Goodwin suggests that as more people with the disease talk about it, the more people will know about CD.
"At first I hid the foods I carried with me to weddings and other celebrations," she said. "Now I openly eat the food I pack and hope that people ask me about it, so that I can educate them about the disease. Many people have found out that they also have the disease after talking to me, and I am so glad that I was able to help them."