A few years following two pregnancies, Lilly experienced a myriad of health concerns – depression, heartburn, chronic fatigue, constipation, diarrhea, joint pain. Her doctor prescribed numerous drugs, depending on the diagnosis of the day, which ranged from osteoporosis to fibromyalgia to irritable bowel syndrome. Lilly remained symptomatic. The doctor assumed it was all in her head.Lilly, however, suffered from celiac disease. A gluten-free diet restored her health.Colorado Springs gastroenterologist Dr. Scot Lewey said celiac disease – gluten sensitivity – affects one in 100 people worldwide. Yet, the disease is commonly missed or misdiagnosed.Over 250 symptoms are associated with celiac disease, said Lewey, an expert on the disease. He defined celiac disease as “gluten intolerance determined through diagnostic criteria and a known response rate in relation to a gluten-free diet.”However, not all gluten-intolerant individuals have celiac disease. The American Celiac Disease Alliance distinguishes celiac disease as an “autoimmune condition, where the body’s immune system starts attacking normal tissue, such as intestinal tissue, in response to eating gluten.”Persons with wheat allergies or gluten intolerance alone are not at risk to develop autoimmune diseases.But celiac disease, if not diagnosed, can lead to other autoimmune diseases like chronic hepatitis, scleroderma, Addison’s disease, systemic lupus and Type 1 diabetes.Gluten-related illnesses also include dermatitis herpetiformis, colitis, chronic fatigue, osteoporosis, some neurological conditions, even ADD or ADHD, Lewey said.Until the 1950s, when a pediatrician from the Netherlands linked malnutrition in children to gluten-laden cereals, celiac disease was a non-disease in the United States.In the 1970s, the first blood tests for celiac disease were introduced, Lewey said. Soon they discovered that 90 percent of the people with celiac disease carry one or both of two white blood cell protein patterns. Lewey said 35 to 45 percent of the population carries those same two genes, but only 1 percent of that particular population is afflicted with celiac disease.The high-risk genes are prevalent in Caucasians of northern European descent, he said. The genes were observed to have a potentially protective effect against illness, which may have been the catalysts for those who survived the plague, Lewey said.”The two genetic copies – one from mom and one from dad – provided some protective advantage in the days before antibiotics,” he added.Modern-day technology, however, could be influencing genetics and inducing incidents of gluten intolerance. “The gluten we have now is the not the same as we had when I was a child in the 60s,” Lewey said. “We’ve engineered the wheat; we’re not eating the same bread.” The result is a wheat hybrid that grows well in adverse conditions – it’s more resistant to insects. Gluten protein is toxic to insects; the higher the gluten content, the less bugs, but the high gluten content may influence the body’s reaction.Engineered and processed foods have “altered our gut bacteria,” Lewey said.Still, doctors are reluctant to prescribe on the basis of diet alone, which is the only cure for celiac disease, he said.Oftentimes, if a disease is not correspondent with a pharmaceutical cure, it isn’t discussed in the doctors’ offices, Lewey said. Traditional medicine is still driven by bottle cures – and history.When Lewey was in medical school, celiac disease was associated with gluten but thought to be rare, he said. “It was a condition in children … we were shown pictures of children who looked like concentration camp survivors – pot bellies, sunken eyes – they were skin and bones,” Lewey said. “We were told to remember it was odd and distinct … it was burned in our hard drive as doctors.” When the gluten was removed from the diet, the children recovered.Between 2001 and 2003, Lewey said several “landmark” studies showed celiac was common but largely undiagnosed. Researchers screened asymptomatic volunteers and found that the previously recorded incidence of celiac disease – one in 6,000 to 8,000 – had drastically changed to one in 250.In 2003, Dr. Alessio Fasano wrote an article citing his studies, which concluded that one out of 133 people in the United States had celiac disease. “Ninety-percent were undiagnosed, and that became a paradigm shift for fact,” Lewey said. Estimates of celiac disease today are 1 in 100, he said. One in 10 people may be gluten insensitive.The average person waits 13 years before he or she is correctly diagnosed with celiac disease, Lewey said. “Physicians are taught things, and they go with it unless they learn something new.”One of Lewey’s colleague and friends – also a gastroenterologist and expert on celiac disease – is Dr. Rodney Ford of New Zealand. He said physicians do not understand the disease.”Gluten reaction is thought of by most medics to only affect the gut,” Ford said. “They are very resistance to the newer concept that gluten can wreak havoc in many other parts of the body, including the nervous system.”Without any doubt, celiac disease occurs in about one in 100 people. But the symptoms are subtle – tiredness, fatigue, tummy pains, heartburn, headaches, low iron, constipation/diarrhea, migraine, irritability. These symptoms are usually dismissed by doctors as just part of the patient’s normal condition. Doctors are looking for really sick people, but most celiacs just get on with life with the burden of their chronic symptoms.”Doctors even misjudge their own symptoms or delay diagnosing them.Lewey and his wife, also a physician, are perfect examples.Symptoms of celiac disease are often triggered by pregnancies, Lewey said. Although he had suspected for a long time that his wife had celiac disease, her symptoms heightened after two pregnancies. She experienced “classic” symptoms like fatigue and diarrhea, he said. A positive biopsy confirmed the diagnosis of celiac disease.In medical school, Lewey diagnosed himself with irritable bowel syndrome andlactose intolerance. Following her diagnosis, Lewey’s wife encouraged him to test for the disease. Although his blood tests were not elevated, other tests indicated he had the gene. A gluten-free die relieved symptoms previously associated with the other diagnoses.Removing gluten from the diet with positive results is the most conclusive evidence of celiac disease, but screening for celiac is often complicated.Blood tests and/or biopsies are commonly used to test for celiac disease; however, Lewey said normal or borderline results do not rule out the disease itself or gluten sensitivity.Stool testing for celiac disease is gaining credibility, but the process is available through one lab, Enterolab, in the United States, Lewey said. Dr. Ken Fine, a former Baylor research gastroenterologist, owns the lab and patented the stool test. Although Lewey said the test is not widely accepted, he has used it successfully to screen his patients.And he is screening more patients in his practice, especially those who present with previously diagnosed hiatal hernias or acid reflux disease. One of his patients had been diagnosed with acid reflux and was seeking surgery as his only remaining option for relief. “He had classic symptoms of celiac disease,” Lewey said. Follow-up tests showed that he had both genes for celiac disease. A gluten-free diet saved him from the knife.Lewey and Ford have become champions of the undiagnosed or misdiagnosed celiac patient and voices for change. Both have written numerous articles on celiac disease. The Consumers’ Research Council of America included Lewey in their 2006 “Guide to America’s Top Physicians.” Lewey and Ford offer informative Web sites. Lewey’s Web site is in process, but his blogs on the subject are available at the site.Lewey cautioned that some Web sites are “confusing, inaccurate and possibly dangerous.”Ford and Lewey agreed that it’s up to individuals to research the disease and if their symptoms are suspect, they must demand that their doctor test them.”It needs to be community driven,” Ford said. “We also need to promote the condition of non-celiac gluten sensitivity, which affects one in 10 people.””The public has to become its own advocate,” Lewey said.The savings to a strapped health care system is potentially huge, he said, adding that businesses could save on insurance costs. Ford said, “One-third of our health burden would disappear.””There are companies that have large numbers of employees with celiac disease,” Lewey said. “One patient had multiple surgeries and multiple medications over 15 years – all related to the non diagnosis of celiac disease.”It’s such a largely hidden epidemic.” He likens the epidemic to the iceberg theory. People diagnosed with celiac disease represent “only a tip of the massive iceberg that’s submerged way below the recognition.”Web sites:Dr. Scot Lewey – www.thefooddoc.comRodney Ford – www.thefooddoctor.orgDr. Ken Fine – www.enterolab.comwww.celiac.comGluten: (from www.hodgsonmill.com) A protein group found in wheat and other flours that forms the structure of the bread dough. Gluten holds the carbon dioxide produced by the yeast and expands during fermentation. It provides the elasticity and extensibility (stretch) in bread dough. Glutenin and gliadin are the two proteins that form gluten.
