<<Disclaimer: Verify this information before applying it to your situation.>> 25 Years and Still Learning, Dr. Peter Ernst --------------------------- Dr. Peter Ernst is Senior Scientist at the Dept. of Pediatrics, University of Texas Medical Branch. He is the son of Canadian Celiac Association (CCA) co-founder Kay Ernst, and is a celiac himself. The classical symptoms of celiac disease (CD) are less common now. Symptoms such as anemia, osteoporosis, chronic fatigue, and neurological problems have become more common. From an epidemiological perspective, most of the history is European and they are finding fewer children and more adults now. He said we need to switch from a cereal-based diet. The USA is reexamining its assumed 1 in 5000 classic presentation and 6% of diabetic children. Most diagnoses are now being made from associated diseases and screening tests. CD is an immune system disease and results in an immune system response according to Dr. Ernst. The activation of the immune system is what causes injury. The immune response is triggered in the case of CD by gliadin and other cereal prolamins, and the balance of the immune regulation controls the type of reaction an individual exhibits. The response is variable with most people having no reaction and those with CD having a very robust response. Celiacs ingesting gluten show a two-to-six-fold increase in intestinal plasma cells, and an increase in intraepithelial lymphocytes. There is a genetic factor in CD. In about 70% of the cases where one identical twin has CD, the other also has it. [Clearly other factors are also involved, or this would be 100%-ed.] Overall, there is about a 10% prevalence in first-degree relatives. The prevalence is higher in relatives with matching HLA haplotypes. One of the following gene combinations is usually found in celiacs: DR3-DQ2 DR5/7-DQ2 DR4-DQ8 Other genes are also likely involved in CD. Genetic tests are not sufficient for screening, because many non-celiacs also have these same genes. The endomysial antibody (EMA) blood test is often used to screen for CD. However, diagnosis should not be made on this test alone. All EMA-positive patients should have a small-bowel biopsy. If the characteristic celiac damage is found, and the patient then responds to a gluten-free (GF) diet, then a diagnosis of CD can be made. The main treatment for CD is a life-long GF diet. Many celiacs found it difficult to comply with this diet, due to factors such as: eating away from home peer pressure for children, teens less acceptable taste, texture accidental ingestion of gluten The use of oats and wheat starch is a controversial topic. Some studies have suggested that oats are acceptable on a GF diet, and in Great Britain wheat starch is considered to be safe for celiacs. [However, in the US and Canada it is almost universally agreed that wheat starch is not appropriate for a GF diet. Also, many celiac experts and most celiac organizations recommend against the use of oats as well, particularly for celiac children.--ed.] A GF diet reduces the risk of malignancy in celiacs. It is unclear how much gluten, if any, is safe, though some feel that low levels of gluten would not be a problem. During Dr. Ernst's talk, he indicated his philosophy toward CD which is, "Don't exclude anything if it is unnecessary." As a result he made three assertions which may provoke no major objection from Canadian celiacs but are controversial among US celiacs. Dr. Ernst's first assertion is that it is almost impossible for gliadins to be in distilled products. For instance, many people avoid distilled vinegar; Dr. Ernst believes this is almost certainly unnecessary. In his mind, there is no "celiac" problem regardless of anecdotal evidence to the contrary. [This is a view shared by the CCA and many experts, including USDA grain expert Donald Kasarda. However, many US celiac organizations, including our support group and CSA/USA, recommend against the use of distilled products unless the source is a non-gluten grain. Each celiac must make their own decision regarding the use of distilled products.-- ed.] Dr. Ernst's second assertion refers to beer. He agrees with most British celiacs, where the general view is that you would have to destroy your liver with the alcohol in several pints a day, in order to come to harm from the possibly few milligrams of gluten in beer. [It is virtually unanimous among US and Canadian experts and celiac organizations that beer would not be safe for celiacs-ed.] The last controversial statement was that "trace amounts of gliadin in a GF diet have no immunological impact". In private conversations with the Tri-County contingent Dr. Ernst defended this conclusion by noting that there is no data supporting an immune system response from trace amounts of gluten. Therefore, one should not be concerned with something that does not produce injury. [Many US and Canadian experts and most celiac organizations espouse a zero-tolerance policy toward gluten intake.--ed.] Dr. Ernst closed his talk by listing some areas for investigation over the next 25 years: immunogenetics of disease factors leading to varying presentations develop grains deficient in prolamines vaccine development relationship to autoimmune diseases determine how much dietary gluten is safe evaluate prevalence in North America In the next 25 years Dr. Ernst expects that: 1. The genetic information on CD will become available. 2. Knowledge of how CD triggers work will become known. 3. An answer will be found to whether the whole protein is a problem or just certain peptides in the proteins. 4. A vaccine to turn off the immune system response will be developed. 5. The minimal, or zero, amount of gluten that is acceptable will be determined. 6. The actual prevalence of CD in North America will be defined by research. During the Q&A session at the end of his talk, Dr. Ernst said that digestive diseases piggyback on prolamin studies. A restructuring of how diseases are funded is needed. Perhaps money will come from pharmacy research.