There isn't a health or wellness article, book or broadcast segment today that hasn't mentioned the term "celiac."
Whereas "going gluten-free" can be a voluntary lifestyle decision in regard to diet, a person who has celiac disease may not have a choice.
"People come to me and are confused," said Jim Conzo of Great Barrington.
Conzo holds a master of science in nutrition from the University of Bridgeport, is a certified nutrition specialist and a Massachusetts licensed dietitian nutritionist and has consulted with clients from the Nutrition Center, Kripalu Center for Yoga and Health and Canyon Ranch.
"There's a difference between just choosing [gluten-free] as a lifestyle. Yes, it works in nicely with a low-carb diet. When you give up gluten you may give up a lot of junky carbs," said Conzo. "But being celiac is just the tip of the iceberg for people with gluten sensitivity."
Celiac disease affects about one in 141 people in the United States -- some 3 million people -- according to a 2012 report from the American Journal of Gastroenterology. Other research indicates that thousands of other people go undiagnosed. Blood tests can confirm a suspected diagnosis.
The word "celiac" stems from Greek terms for "cavity of the abdomen." Celiac disease -- also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy -- affects more than just the gastrointestinal tract.
According to the National Institutes of Health, celiac disease is an autoimmune disorder in which people cannot tolerate the protein gluten because the response it causes damages the lining of the small intestine over time and prevents absorption of nutrients.
Gluten is a protein found in wheat, rye and barley and in some products such as vitamin and nutrient supplements, lip balms and certain medications. To digest proteins, the human body assigns particular enzymes to break up proteins into easy-to-stomach amino single acids. The problem with gluten is that the body's enzymes can't break down the complex gluten protein molecules. These partially digested strands can seep into the small intestine. In someone with celiac disease, gluten strands are seen as invaders, prompting an immune response and swelling with antibodies.
"The immune system is overwrought with blocking gluten molecules," Conzo explained. "It's fighting food molecules," which affects healthy nutrition.
Traditionally assumed to be a GI disease, researchers are now understanding that symptoms of celiac can also include severe and/or chronic tissue and nerve inflammation and negative neuromuscular responses; in addition to chronic diarrhea, weight loss, abdominal distention, recurrent abdominal pain and chronic fatigue, among other symptoms. In children, the effects of an autoimmune response to gluten can also affect development and growth.
"Even in the realm of celiac patients, they have a spectrum of how sensitive they are. Some people can't eat food cooked in pots that previously had gluten in them," said Conzo. "Sometimes there isn't any GI problem at all."
Dr. Thomas Edwards of Berkshire Allergy Care in Pittsfield is certified in allergy and immunology, and sees a lot of people who are concerned they might have an allergy or aversion to gluten or wheat.
He said a wheat allergy, which typically appears in childhood and can be outgrown, is the body's allergic response, versus an autoimmune response, to being exposed to some part of the wheat grain or plant. The reaction is almost immediate, and can cause symptoms such as swelling, itching or irritation of the mouth or throat; hives, an itchy rash or swelling of the skin; congestion and/or difficulty breathing; itchy, watery eyes; cramps, nausea or vomiting, diarrhea or life-threatening anaphylaxis. Unlike celiac disease, testing for wheat allergies can be as easy as a skin test.
In determining a gluten sensitivity or celiac disease, both Edwards and Conzo said experimenting with the removal of gluten in a diet is a good way to monitor changes in symptoms.
"It might involve some expense, be a nuisance and inconvenience, but otherwise it's entirely safe," Edwards said.
"People tend to look at illness as something that happens for no reason, but there is a reason," said Conzo. "You need to find out what's causing the inflammation. That's why a gluten-free diet is such a powerful tool."
If you do get formally diagnosed with celiac disease or discover that you feel better without gluten in your diet on your own, Conzo said, "It's not the end of the world, but you're going to have to make some changes."
Back in August, the federal Food and Drug Administration passed a regulation to better support people with celiac disease by defining the term "gluten-free" for voluntary food labeling.
It requires that, in order to use the term "gluten-free" on its label, a food must meet all of the requirements of the definition, including that the food must contain less than 20 parts per million of gluten. The rule also requires foods with the claims "no gluten," "free of gluten," and "without gluten" to meet the definition for "gluten-free" within a year's time.