Their symptoms might have been lumped into a catch-all category of irritable bowel syndrome, or they might even have been told it was all in their head. Then came growing awareness and a consequent increased interest in research and better testing methods. Ever so slowly but surely it became easier to get diagnosed and return to good health through a gluten-free diet.
Now, it seems, the same process is beginning for those who are gluten sensitive.
Like celiac disease patients before them, people who have gluten sensitivity have long been frustrated by the fact that doctors can not pinpoint what is wrong. Their tests for celiac disease are usually negative, and they are often advised not to follow the gluten-free diet even though it relieves their celiac-like symptoms.
New research from the University of Maryland may mark the beginning of the end of that scenario.
In a study published online at BMC Medicine, scientists from the Center for Celiac Research found that gluten sensitivity is a bona fide condition, distinct from celiac disease, with its own intestinal response to gluten.
"The research provides the first scientific evidence of a different mechanism leading to gluten sensitivity," the celiac center said in a press release. "It also demonstrates that gluten sensitivity and celiac disease are part of a spectrum of gluten-related disorders."
Alessio Fasano, MD, the lead investigator of the study and the director of the celiac center said one end of the spectrum is made up of people with celiac disease who can't tolerate even a crumb of gluten, while at the other end gluten causes no problems.
"In the middle, there is this murky area of gluten reactions," he said. "This is where we are looking for answers about how to diagnose and treat this recently identified group of gluten-sensitive individuals."
The study included 26 gluten sensitive and 42 celiac disease patients, plus 39 control subjects. Although gluten sensitive patients have the diarrhea, abdominal pain and other symptoms suffered by those with celiac disease, they do not have the damage to the absorbing lining of the small intestine that characterizes the auto-immune disorder.
After a four month gluten-challenge followed by a return to the gluten-free diet, symptoms in all the gluten sensitive participants resolved in a few days and did not return for a follow-up period of four years.
Researchers found differences between celiac disease and gluten sensitivity in intestinal permeability and genes regulating the immune response in the gut.(Intestinal permeability is the ability of the mucosal layer of the digestive tract to prevent bacteria, antigens, and undigested food proteins from seeping through the gastro-intestinal barrier. Those who have celiac disease often have a high degree of permeability, sometimes called a leaky gut, but the study found that was not the case in those who are gluten sensitive.)
The study documents, for the first time, the genes and sequence of reactions in the small intestine possibly associated with gluten sensitivity, Fasano said. Results of the study could lead to all-important tests that could diagnose gluten sensitivity.
About six percent of the US population, or about 18 million people, have gluten sensitivity, according to the celiac center, compared to 1 percent who have celiac disease.
While results of the study are new, Fasano's conviction that gluten sensitivity is a legitimate condition has come up before. In an interview in Gluten-Free Living late last year (Number 4/2010), he said gluten sensitivity had always been disregarded by the medical and scientific communities. And he noted the desperation of those who suffered from its very real symptoms. "There is definitely a group..who are really and truly sensitive to gluten and when you remove gluten they don't have symptoms," Fasano said.
He alluded to the new study when he said the celiac center had some papers coming out that would start to give clues to some possible markers that could be looked at to make a diagnosis of gluten sensitivity.
Now one of those papers is here. In the gluten-sensitive community you could feel the satisfaction that came with acknowledgement that the conditions is, in fact, real. (No one could blame them for wanting to say "I told you so.")
Now let's hope the diagnostic tests aren't too far behind.