Five years ago, few people knew the term gluten-free. Many still don’t understand how prevalent this protein is and the damage it can cause to millions of people around the world.

Gluten-free products, which are becoming more available in markets, aren’t part of a fad diet or any form of diet at all. For people with celiac disease, gluten, a protein found in wheat, barley and rye, poses a serious health risk.  According to the Celiac Disease Foundation, one in 133 people has this autoimmune disease triggered by the ingestion of gluten.

When people with celiac disease consume anything containing gluten, hair-like projections in the small intestine called villi are damaged. Villi absorb nutrients from food; when they are damaged, they will not absorb nutrients like proteins, carbohydrates and vitamins which are essential to normal body function.

Celiac disease is the most common autoimmune disease in the world, according to Dr. Peter Green, director of the Celiac Disease Center at Columbia University in New York. About 30 to 40 percent of people have the genetic makeup that puts them at risk for the condition. Out of those, 1 percent develop the disease.

“One percent may not sound like a lot, but that’s high,” Green said.

One percent of the world’s population is about 65 million people. Of those, only 3 percent have been diagnosed and are aware they have the disease. Not nearly enough people have been diagnosed, but more people are learning about it, Green said.

“At least we’re increasing awareness about the lack of awareness,” he said.

Doctors often lack the understanding and knowledge necessary to help diagnose a patient, Green said.

“Not a lot of physicians know the different manifestations,” he said.

Carol M. Shilson, executive director of the University of Chicago’s Celiac Disease Center, explained it is important to recognize the difference between celiac disease and a wheat allergy. In an allergy, the adverse reaction will stop once the gluten is out of the body. For people with celiac disease, the reaction can last for days and cause permanent damage. A wheat allergy causes a typical food allergy response with symptoms like hives and itchiness.

People can also experience gluten sensitivity. Those with sensitivity do not test positive for celiac disease nor do they show physical signs of an allergy. However, they experience varying levels of discomfort, usually with digestion. The problem with sensitivity is there is currently no test for it, Shilson said.

“Truly, there is no other medically based way to diagnose gluten sensitivity other than to say you’ve ruled out celiac disease and you’re feeling better on a gluten-free diet,” she said.

Shilson said she understands the confusion many people face when they test negative for celiac, but are sure their problems arise from gluten products.

“You feel lost in limbo if you don’t have a clear diagnosis,” she said. “You can’t blame the patient for wanting to feel better.”

Green called this lack of medical testing a “no-man’s land” for both doctors and patients.

Dr. Alessio Fasano, director of the University of Maryland Celiac Research Center, said one upside to celiac disease is that unlike other autoimmune diseases, the trigger is well known. If those with symptoms or family members of those with celiac get a genetic test or the current standard for diagnosis, which includes a blood test and a biopsy of the small intestine, it can give one a peace of mind. It’s also much better than self-diagnosing, he said.

“It’s totally inappropriate to self-diagnose,” Fasano said. “It’s like saying if you are light-headed and you pee a little more you say, ‘Well, I’m going to shoot myself with 20 units of insulin to see if I have diabetes.’ You don’t do that. You go through all the processes to make the diagnosis.”

Fasano also stressed the importance of maintaining a gluten-free lifestyle. It should not be considered a typical diet, he said, because it is a necessity.

Not heeding to the dietary restrictions can lead to early onset osteoporosis, gastrointestinal cancers, anemia, and it may even have a link to some psychiatric conditions.

The biggest factor now, Green said, is getting doctors to order the right tests for their patients. This requires a standardization of how the test is read and analyzed.

Since labwork is usuallly privatized in America, it may take some work to achieve a uniform process. While this has yet to be established, he said we are heading in the right direction.

“There have been some major steps, but it’s a slow process,” Green said.

There is currently no treatment for celiac disease or any level of sensitivity to wheat besides a gluten-free diet, but  many celiac centers are working on a vaccine. Shilson’s team is the first in the world to create an animal model for trials, inducingthe disease in mice. Shilson said she hopes the vaccine will  “unlock some keys” to realted autoimmune diseases,  such as Type 1 diabetes.