By BRIAN SODOMA
VIEW ON HEALTH
It’s a source of frustration and satisfaction for any researcher. Each new discovery brings more questions, more to learn and study. And that is certainly the case for the topics of celiac disease and gluten sensitivity.
For the past decade the gluten protein has become the nutrition world’s big public enemy, and perhaps for good reason. More and more people are being diagnosed with celiac disease, a condition where one’s body cannot tolerate gluten and the resulting autoimmune response is an attack on the intestinal tract. The increase in diagnoses has been five-fold since the 1960’s; it’s up to 1 in 100 people today, says Dr. Peter H.R. Green, director of Columbia University’s Celiac Disease Center.
It was not until about 15 years ago that the American medical community began taking celiac disease and gluten sensitivity seriously. But the conditions are still grossly overlooked, asserts Green. He adds that gluten doesn’t fit the bill for medical research, as its fix is dietary. There’s no drug required to help the conditions, so the roughly 80 percent of research trials that are funded by pharmaceutical companies aren’t targeting a non-money-maker like Celiac Disease and gluten sensitivity, he adds.
Green says the overlooked diagnosis of celiac patients is important because the group has a 30 percent higher mortality rate than the general population. He also says another reason gluten sensitivity and celiac disease get short shrift is because of vague symptoms and research findings that only seem to bring more questions.
He gives examples of people having only part of the genetic code for celiac disease and having full-blown celiac cases and others with the same genes having nowhere near that extreme of ailments. Not to mention, many patients feel they need to beg a doctor to run tests for celiac or sensitivity.
“Patients are a bit jaded. They don’t feel like they’ve really had the support of the medical community and had to sort of work things out on their own,” Green adds.
THE GLUTEN PROBLEM
Gluten is a protein found in wheat. celiac sufferers and those who are gluten sensitive must avoid it as well as secalins and hordeins, which are the proteins found in rye and barley that can cause similar gluten-sensitive responses like intestinal discomfort and skin rashes. Even though, technically-speaking, gluten is really only present in wheat, the medical community has simplified the subject by simply referring to secalins and hordeins as gluten as well.
Like lactose intolerant sufferers whose bodies lack the lactase enzyme to digest the protein, celiac disease and gluten sensitivity sufferers also lack the enzymes needed to break down gluten.
The body’s response is quite different, however, between those who are simply gluten sensitive and celiac disease patients. Most celiac patients have a gene known as HLA-DQ2. There are dozens of other gene regions that are thought to be associated with celiac disease, but HLA-DQ2 is considered the most common. With this gene, a person with celiac disease — and again having the gene does not guarantee one will get celiac disease — the body’s immune system attacks the intestine when gluten is introduced. This is perhaps part of the reason symptoms like irritable bowel syndrome and constipation appear more common for those who could possibly have celiac disease.
Very few adults who are diagnosed with celiac disease see their intestines heal completely, says Dr. Martin Kagnoff, director of the K. Warren Medical Research Center for Celiac Disease at University of California, San Diego (UCSD). Children, however, may see their intestinal tract completely heal, he adds.
While celiac patients have virtually zero tolerance, those who are gluten sensitive may be able to take in a few grams of gluten in a day, adds Dr. Alessio Fasano, director of the University of Maryland’s Center for Celiac Research. A slice of bread for example has about 5 grams of gluten in it.
“There’s a tremendous difference in the way you play the game,” Fasano explains.
Taking a hint from your body on whether you should be tested for celiac disease or gluten sensitivity can be difficult. Symptoms are extremely vague, most doctors admit. Body distress like irritable bowel syndrome, skin rashes, anemia, depression, chronic fatigue, a foggy mind, difficulty staying on task, headaches, tingling in the arms and legs, anemia, vomiting, osteoporosis, constipation, infertility, miscarriages, all fall under the symptom list for celiac disease or potential gluten sensitivity. Again, the biggest problem appears to be getting doctors to take a patient seriously about having a gluten problem in the first place.
“One of the problems is that doctors are not really educated about this and patients get blown off. Some physicians don’t have an open mind to this,” Green adds.
Kagnoff says that UCSD is currently doing a study on barriers to testing and diagnosis for patients who have celiac disease or gluten sensitivity. One of the areas his research group is looking at is doctor resistance to running tests for patients who request them.
Fasano, who was trained in Italy, says celiac disease was a huge emphasis in his education and schools in Europe (whose populations tend to have higher counts of people with the genetic predisposition towards celiac disease) adds that the medical community in general is trained to look for evidence-based theories and to approach patients with a healthy dose of skepticism. But with more and more people surfacing whose stories indicate symptoms are subsiding with a gluten-free diet, doctors may be warming to testing.
“A good doctor with his heart and soul in the right place can make your life better,” Fasano adds. “(A notion) in the past may have been garbage, but now we may be thinking it’s rational.”
Diagnosing celiac disease or gluten sensitivity has come a long way in the past decade. Fasano says a blood test looking for the specific antibodies found in celiac patients is the first order of business. That test is coupled with a wheat allergy test.
If both of those tests come back negative, Fasano tells patients to do a gluten-free trial, simply steering clear of gluten products for a period of time and seeing if symptoms subside. Fasano also likes to do double-blind tests where patients don’t know if some of the food they are eating is gluten-free or not.
“If the symptoms go away in a few weeks or months, chances are you have a sensitivity,” he adds.
Fasano recently published a study that showed gluten sensitivity to be different from celiac disease at the molecular level. His next phase of research will be to identify biomarkers for gluten sensitivity, like the markers that have been found for celiac disease.
FOOD, THE HIDDEN TRUTHS
After a diagnosis, it’s quickly learned that wheat is one of the biggest food additives on the planet, particularly in America. Reading labels in a grocery store can get depressing, and the small gluten-free sections in specialty stores are stocked with tasty items that are about four or five times more expensive than their grocery store, wheat-filled counterparts.
“You can eat everything except wheat, rye and barley. It’s easy to say, very difficult to implement,” Fasano says, while adding that anything pre-packaged and microwavable from the grocery store probably has gluten in it. The upside, he notes, is that prices are coming down in the roughly $2 billion a year gluten-free food industry. But he also says gluten-free products will probably always at least be twice the price of their wheat-ened matches because of the need to find alternative ingredients and further testing of food. It all adds to the cost of making the products.
Kagnoff says a gluten-free diet is a fad diet these days. He claims, and studies have backed this, that only about 12 percent of people on a gluten-free diet are actually diagnosed with a gluten problem. Losing weight on a gluten-free diet is “absolute nonsense,” he adds.
Kagnoff also says a gluten-free diet can be rather unhealthy, as so many dedicated gluten-free foods are processed foods like pretzels, energy bars, fruit bars, foods that, regardless of a lack of gluten content, have ingredients that are far from their natural state. He recommends, “shopping the periphery of the grocery store.” Items like fruits and vegetables and meats are naturally gluten free. Dairy items are gluten free as well, but he cautions that many celiac patients whose intestines have serious damage are lactose intolerant as well. celiac patients in particular require supplementation to aid their damaged intestinal tracts, he adds.
Experts also warn of contaminating foods. For example, gluten-free toast should not be toasted in the same toaster that was used for wheat bread. And there are myriad “hidden” sources of gluten in foods as well. Medications and prescriptions frequently contain gluten and household detergents as well as an envelope requiring moisture to seal can also have gluten on it.
Even the “safe” flours like rice and potato may have been processed in a plant that also processes wheat flour. More and more manufacturers are labeling their foods if they process multiple types of grains. Oats, depending on where and how they are processed could also have gluten. Oats are a nutrient for debate, as some celiac patients have been able to tolerate them, but others haven’t had such great luck and contamination is a suspect.
The FDA (Food and Drug Administration) is currently re-working its labeling requirements to encourage manufacturers to be more forthright with their ingredients and whether they are gluten-free or not.
Despite gluten not being a research priority by some standards, there are interesting studies afoot, according to Kagnoff. Much research has been done on the “mechanisms that underlie” celiac disease, the doctor says. Finding out why some who have the genes that predispose them to celiac disease and get it and others don’t is a question that may be finding some answers with the further unveiling of other gene types associated with celiac disease.
There also drugs being considered to bind gluten and ones that can alter intestinal permeability to make it easier to digest for those with intolerance. Even enzymes, not unlike the lactase enzyme for lactose intolerance, are being explored. Researchers are even looking at re-engineering wheat to not include the amino acid chain that causes digestion problems, notes Kagnoff.
The doctor says there is also a small population of celiac patients who no longer respond to a gluten-free diet. That group also goes on to develop type II celiac disease, which can result in lymphoma and a high mortality rate. A look into antibodies that can block this development is also underway, he adds.
Kagnoff, himself, is researching the reliability of information on Web sites and publications. While the results are not complete yet, he adds that most major commercial sites are giving solid information. He cautions against bloggers and information that isn’t substantiated by academic or quantifiable research. Green also says the information being passed along on the Internet requires some second looks, especially when it comes to diet suggestions.
“In this day and age people can be very proficient, looking up all kinds of information and they learn very quickly what to avoid. But the other half with celiac is learning what to eat,” he says.