A decade ago few people had even heard of Celiac Disease. Now, there's dedicated gluten-free aisles at the grocery store and clearly-labeled menu items at some restaurants. So how did this happen?
"Celiac disease is complicated," noted Dr. David Wolf, a gastroenterologist and assistant professor of medicine and associate director of the Gastroenterology Fellowship Program at The University of Texas Health Science Center at Houston (UTHealth) Medical School.
"It's a combination obviously of more prevalent testing for the disease, but also there does appear to be an increase in the disease overall, but we're not sure why. It may be environmental; it may be dietary proteins."
Also increasing is the disease's profile. A large percentage of the population is now familiar with the disorder, and it's not uncommon for doctors to see patients who have already done their own research and are curious as to whether they may have the commonly overlooked or misdiagnosed disease.
"The clinical presentation can be difficult to diagnose," Dr. Wolf noted. "A lot don't show symptoms."
Getting to the root of Celiac
Many think of Celiac simply as an allergy to gluten. That's not accurate. In reality, the autoimmune condition damages the lining of the small intestine and prevents absorption of some nutrient-rich parts of food.
It occurs as part of a reaction to eating gluten, commonly found in wheat, barley and rye -- but only in those with the disease. Some with the disease also may be affected by oats, though it varies by patient.
Those with the disease become malnourished, regardless of how much food they consume since it is not properly absorbed.
Gluten is commonly found in breads, pasta, cereal, and even beer, though many manufacturers now offer gluten-free products.
The disease is diagnosed through a blood test to check for antibodies, and also often includes an endoscopy with a biopsy to search for abnormalities
Classic signs of the disease include gastrointestinal symptoms, such as diarrhea, weight loss and abdominal distension, excess gas, constipation; nausea and vomiting, anemia, malabsorption and malnourishment. Long-term malabsorption could even lead to osteoporosis, Dr. Wolf noted.
In rare cases, the lining of the intestines will have suffered long-term damage by the time the disease is diagnosed. However, the disease often is silent.
"A lot of people have latent Celiac Disease where there is no obvious evidence," said Dr. Wolf. "That's why it can be difficult to diagnose -- because a lot of people don't show symptoms. Sometimes patients can have very vague symptoms and it can be misdiagnosed as irritable bowl syndrome."
He noted the disease could seen especially nondescript in children, who may simply complain of vague abdominal comfort and bloating. Even so, Dr. Wolf finds it is easier to diagnose children than adults because the symptoms, which are often different than in adults, tend to come on more severely in younger patients.
When the disease is diagnosed in childhood, doctors often find children are suffering muscle wasting, growth delays, failure to thrive and abdominal distention.
Because the cornerstone of the disease is malabsorption, Celiac patients often experience other symptoms as a result of poor nutrition such as bruising easily, hair loss, nosebleeds, mouth ulcers, depression or fatigue.
Dr. Wolf said that about 1 percent of the population is believed to have the disease. There is a genetic susceptibility though, so it is not uncommon for several members of one family to suffer from Celiac.
Those believed to be at the highest risk are Scandinavian or Celtic populations where up to one in every 99 individuals may have the disease. There also is a higher prevalence among populations from Italy, southeastern Austria and India.
When it comes to treating Celiac, there's no magic pill to make it go away. The only way for patients to feel better is to follow a strict gluten-free diet.
While many food manufacturers have started labeling foods as "gluten-free" to aid patients, gluten isn't just found in food. It also means skipping some alcoholic beverages, candy and salad dressings, and even taking care with dietary supplements or medications.
"They are pervasive, even in medications. There really is a very extensive list available for patients," Dr. Wolf said. "Some are very sensitive to even small amounts."
This means patients must carefully read the labels even on foods that are labeled "gluten-free" to ensure they were processed in facilities where there was no chance of cross contamination with wheat products.
However, once patients have cut gluten from their diets, they can expect to begin feeling better several weeks or several months later. For some adults it could take two to three years before damage done to the intestines from consuming gluten has fully healed, according to the National Institutes of Health.
Eliminating gluten does not have an immediate impact because the gluten-containing material generates an immune response from the body, and it can take weeks to halt that response.
Going gluten free
If one member of a family has Celiac and the other do not, having everyone follow a gluten-free diet will not be harmful. In fact it may be much easier than the task of preparing separate meals.
"The gluten-free diet is a healthy diet for anyone to follow. They can live a very healthy, normal existence," said Dr. Wolf. "Because of the fact that Celiac patients have a low threshold for small amounts of gluten, it is very difficult for families to prepare both gluten and non-gluten free items because of the risk of cross contamination."
Even using shared cutting boards, pans or knives may be enough to sicken a patient with Celiac. A miniscule amount could make some patients very ill.
Others opt to switch to a gluten free diet for other reasons. Because products without gluten are easier to digest, such a diet can provide benefits to patients with other conditions such as irritable bowl syndrome.
Another reason people may choose to go gluten-free is because they believe the diet will offer health benefits, or because labels proclaiming "gluten-free" have led them to believe that gluten should be avoided. This couldn't be farther from the truth for those who are not susceptible to gluten.
"If it's causing diseases some people assume eliminating (going gluten-free) would be good for you, but that's not correct," said Dr. Wolf. "Gluten is not a danger. You could be right if you are genetically susceptible, but someone who is just restricting their gluten is different than being gluten-free."