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Celiac.com 07/02/2021 - Do you suffer from symptoms of abdominal pain, stomach aches, excess bloating, gas, diarrhea, fatigue, bone or joint pain, skin rashes, headaches, difficulty concentrating or irritability? Gluten, the major protein in wheat, barley and rye causes these symptoms in many people but most, including their physicians, are unaware that gluten is the cause and that a gluten-free diet may relieve these symptoms. Though there are diagnostic blood tests available for identifying gluten sensitivity, these test have limitations. Many physicians are unaware these blood tests are available, including genetic tests for the risk. Most physicians are also unaware of the broad manifestations of gluten sensitivity and fail to order tests that could diagnose the cause. Sadly, the condition often goes unrecognized and untreated when it is very common and reversible by simply following a gluten-free diet. No medications or surgery are required. Worldwide nearly 1 in 100 people have the most severe form of gluten sensitivity or intolerance known as Celiac disease though it is estimated that more than 90% are undiagnosed. Startlingly, many more than this, possibly 10-30% of people of northern European ancestry, have lesser forms of gluten sensitivity that causes symptoms that improve on a gluten free diet. The low carbohydrate diets have become popular because many have lost weight but they also frequently experienced dramatic improvements in general feeling of well being, increased energy, relief from fibromyalgia, joint aches, improved skin, fewer headaches, and improved digestive symptoms. However, many fail to gain full benefit because they don’t know they are gluten sensitive and have not completely eliminated gluten from their diet since gluten is present in so many foods that we eat. Gluten is insulinogenic, meaning it stimulates insulin release, and thereby promotes weight gain. Abnormal blood sugar regulation also often occurs. Some people will gain weight despite malabsorbing essential nutrients. It is now known that more than 10% of insulin dependent diabetics have celiac disease. What is not yet known is whether the celiac came first or the diabetes, but that they commonly occur together. Celiac disease is also commonly associated with other autoimmune conditions such as lupus, rheumatoid arthritis and thyroid problems. Celiac disease is a reversible cause of infertility, low birth weight infants, pre-term labor, and recurrent miscarriages. Untreated it is associated with a significantly increased risk of numerous cancers including all GI cancers and lymphoma. It is a common cause of unexplained anemia especially from iron deficiency and causes premature osteoporosis. Dietary elimination of gluten allows the intestine to heal so that absorption is normalized and symptoms are relieved. After five years of a gluten-free diet the cancer risk returns to normal as long as the individual remains gluten-free for life. Classic celiac disease is diagnosed by abnormal blood tests and an abnormal intestinal appearance on biopsy. Blood tests for celiac disease include antibody tests for gliadin (AGA), the toxic fraction of gluten; endomysial antibodies (EMA); and tissue transglutaminase antibody (tTG). High antibody levels to EMA and tTG are generally accepted as diagnostic for celiac disease though some individuals with celiac disease and most with lesser degrees of gluten sensitivity may have normal levels. AGA levels have, in the past, been considered very sensitive but not specific for celiac disease. Newer assays for AGA antibodies for gluten that has undergone a chemical change called deamidation that appears to be more specific for celiac disease (Gliadin II, Inova) may be as or more accurate than EMA and tTG antibody tests. However, lesser forms of gluten intolerance may be missed when any of these blood tests are normal or borderline and/or small intestine biopsy is normal or indeterminate. Stool antibody testing for antigliadin and tTG has been performed in research labs and published in a few studies. The commercial lab, Enterolab, now offers these tests though the former research gastroenterologist Dr. Ken Fine, who patented the test, has yet to publish the results of his findings in a peer reviewed journal. His unpublished data and the clinical experience of some of us who have used his test have indicated the tests are, to date, 100% sensitive for celiac disease. They are highly sensitive for gluten sensitivity of lesser degrees before blood tests or biopsies become abnormal but when symptoms exist. These symptoms reverse on a gluten-free diet instituted by those with abnormal stool antibody levels. Small intestine tissue obtained by biopsy during upper gastrointestinal endoscopy has been considered the “gold standard” for the diagnosis of celiac disease since the 1950s. However, recent studies have demonstrated that some people with gluten sensitivity, especially relatives of celiacs with few or no symptoms, may have changes from gluten injury in the intestine that can only be seen on a small intestine biopsy with special stains not routinely used, or on electron microscopy done in the research setting. Immunohistochemistry stains can detect increased numbers of specialized white blood cells called lymphocytes in the intestinal lining tips or villi as the earliest sign of gluten induced injury or irritation. Electron microscopy also reveals very early ultrastructural changes in some individuals when all other tests are normal. According to published research, when people are offered the option of gluten-free diet based on these abnormalities they have usually responded favorably, whereas those who continued to eat gluten often later developed classic celiac disease. What these studies suggest is that a “normal small intestine biopsy” may exclude celiac disease as defined by strict criteria but it does not exclude gluten sensitivity, a fact appreciated by many individuals who ultimately started a gluten-free diet based on their symptoms, family history, suggestive blood test or stool antibody test(s). Those few physicians who appreciate the concept of the spectrum of gluten intolerance or sensitivity are outnumbered by the medical majority that continues to insist on strict criteria for the diagnosis of celiac disease before recommending a gluten-free diet. Physicians either unfamiliar with the research on celiac or who are holding onto the strict criteria for celiac as the only indication for recommending a gluten free diet unfortunately often leave many gluten sensitive individuals confused or frustrated. Some seek answers on the Internet or from alternative practitioners. Many have their diagnosis missed, challenged, or dismissed. Others are misinformed or receive incomplete information. As a result many may fail to benefit from the health benefits of a gluten-free diet because they are advised that it is not required because they have normal blood tests and/or normal biopsies. Another source of confusion lies in the knowledge that certain genetic patterns are present in over 90% of individuals with celiac disease. Testing for such specific blood type patterns on white blood cells known as HLA DQ2 and DQ8 is increasingly employed to determine if a person carries the gene pattern predisposing to celiac disease. Some use the absence of these two patterns as a way of excluding the possibility of celiac disease and the need for testing or gluten-free diet. However, there are rare reports of classic Celiacs who are DQ2 and DQ8 negative. Moreover, recent studies indicate other DQ patterns may be associated with gluten sensitivity though very unlikely to predispose to classic celiac disease. Testing for all the DQ patterns has been advocated by Dr. Fine based on his experience with stool antibody testing that has revealed that the other DQ types are associated with elevated levels, symptoms, and positive response to gluten-free diet. According to his unpublished data, all the DQ types except DQ4 are associated with a risk of intolerance to gluten. Testing for the DQ types allows a person to determine if they carry one of the two high risk gene types for celiac disease or the other “minor” DQ type associated with gluten sensitivity but low risk for celiac disease. Enterolab also offers the stool testing for gliadin antibodies and tissue transglutaminase antibodies as well as several other stool tests for food intolerance or colitis. Though not widely accepted, these tests have gained favor with the lay public as an option for determining sensitivity to gluten or other food proteins, either despite negative blood tests and/or biopsies, or in place of the more invasive tests. Most recommend the accepted blood tests and small bowel biopsy for confirmation of celiac. The favorable reports in the lay community have been overwhelmingly positive though they can’t be subjected to peer review by the medical community prior to the publication of Dr. Fine’s data. Physicians open to the broader problem of gluten sensitivity are reporting these tests helpful in many patients suspected of gluten intolerance with negative blood tests and/or biopsies, though some are not certain how to interpret the tests. The national celiac organizations have difficulty commenting on their application without published research though a recent article in the British Medical Journal did show stool tests highly specific for celiac. Dr. Fine’s has publicly commented that his unpublished data demonstrates those with abnormal stool tests indicating gluten sensitivity overwhelmingly respond favorably to a gluten free diet with improvement of symptoms and general quality of life. There is no agreed-upon definition for gluten sensitivity or intolerance, especially for those who do not meet the strict criteria for celiac disease yet may have abnormal tests and/or symptoms that respond to gluten-free diet. Those individuals become confused when they realize that because they aren’t diagnosed with celiac disease, they don’t know where to turn for more information. Consensus in the medical community on definitions and more research in this area are greatly needed.