<<Disclaimer: Verify this information before applying it to your situation.>> Newsletter Roundup ------------------ Compiled by Jim Lyles We exchange newsletters with several other celiac groups. In this article I will summarize some of what we've learned from our newsletter swapping. ................................................ : : : Excerpts from _Celiac SprueNews_ : : -------------------------------- : : April/May 1996 Jan Hill, editor : : CSA/USA San Diego Chapter : : 10424 Flanders Cove : : San Diego, CA 92126 : :..............................................: CD-related Articles: In the last 30 years, just over 6,000 papers have been published on CD. Of these, only 10 were published by researchers from the United States.<2> Lentils and Dry Peas are members of the dry legume family, close relatives of the bean. These are two of the most nutritious foods. They are a vegetable protein and a complex carbohydrate and contain no cholesterol or fat. Legumes are low in calories and have more dietary fiber than any other major food (including vegetables, nuts, fruits, and grains). Lentils and dry peas fit in well with today's health-conscious diets.<3> ............................................................... : : : Excerpts from the Gluten Intolerance Group of North America : : ----------------------------------------------------------- : : newsletter: March 1996 Cynthia Rolette, editor : : PO Box 23053 : : Seattle, WA 98102-0353 : :.............................................................: More on the Finnish Oats Study: In October 1995, the New England Journal of Medicine published a study from Finland entitled "A Comparison of Diets With and Without Oats in Adults with Celiac Disease", by Esko K. Janatuinen, et al. This study suggests that oats may be safe for celiacs. But there are several points to consider: * The study purposely omitted those with "severe CD", and those whose CD "relapsed" or whose symptoms worsened. This factor alone might omit anyone who is symptomatically sensitive to any small contamination in their diet. * Both the control group (which ate no oats) and the test group ate a diet that is not GF according to US standards, as wheat starch was used in both groups. This makes it difficult to determine if the equivalent results between the two groups were due to oats being safe, or due to both groups consuming wheat starch. * The amount of oats consumed was relatively small, and the time of the study was relatively short (12 months). Also, oats have less avenin (gliadin's counterpart in oats) than wheat has gliadin. A study involving larger quantities of oats, lasting five years, would be more helpful in determining the toxicity of oats to celiac patients. * Research suggests that in some persons with CD it can take over a year to see the microscopic changes in the small intestine caused by gluten contamination. * In the US and Canada, oats may be cross-contaminated by wheat and other grains in the field, during harvesting, and in processing. It may be difficult to find a pure source of oats. The Gluten Intolerance Group of North America recommends that celiacs completely avoid oats. [The study involved only adult subjects, so there is no way to know how children would react to oats. Certainly for children, oats are NOT advised. We also advise adult celiacs to completely avoid oats, at least until more studies have been done.--editor] ............................................................... : : : Excerpts from the Houston Celiac-Sprue Support Group : : ---------------------------------------------------- : : newsletter: Mar./Apr. 1996 Janet Y. Rinehart, President : : 11011 Chevy Chase : : Houston, TX 77042-2606 : :.............................................................: _Diabetes Forecast_ is set to publish an article this summer about the connection between CD and Type I Diabetes. -=-=-=-=-=-=- Talk Highlights<4>: The following are highlights from a talk by gastroenterologist Sheila E. Crowe, one of the medical advisors for the Houston Celiac Sprue Support Group. * When someone past the age of 50 is diagnosed with CD, there is a greater probability of lymphoma and other associated diseases. * Untreated celiacs are at a higher risk of developing small bowel lymphoma and adenocarcinoma; but the risk is still quite small. The risk of developing a "common" cancer such as colon, breast, or lung cancer is much higher, though not any higher than it is for non-celiacs. * For reasons that are not entirely clear, untreated celiacs are at a higher risk of developing esophageal cancer. It may be related to certain nutrient deficiencies caused by malabsorption. * It is extremely important to get a definitive diagnosis of CD in children. To put a child on a GF diet for life without a proper diagnosis is a disservice to the child. Other diseases have celiac-like symptoms. Once you've been on a GF diet, it is much harder to get a proper diagnosis as a gluten-challenge is required first. * If you do not get better on a GF diet after being diagnosed as a celiac, the biopsy should be reviewed by someone experienced. Dr. Crowe always looks at the biopsy specimens along with the pathologist. * Patients are entitled to their medical records, including actual tissue slides, to present for a second opinion. * Pancreas damage can cause symptoms similar to CD. Symptoms of pancreatitis include pain (sometimes severe), weight loss, fat malabsorption, and foul-smelling stools. However, the two conditions should not be confused by a specialist. The correct diagnosis is important, as management of the two diseases is quite different. * Irritable Bowel Syndrome (IBS) is specific to the lower bowel, occurs more often in women than in men, and is not associated with anemia and weight loss. However, it can cause diarrhea, constipation, and abdominal pain (sometimes alternating with constipation). Blood work, X-rays, endoscopies, and biopsies are usually completely normal. IBS patients may be sensitive to gluten, but this is not an immune system response (whereas CD is), it is a neurohormonal response. IBS patients may have problems with many other foods. Patients can be incorrectly diagnosed with IBS when in reality they have colitis, Crohn's disease, or CD. * Lactose Intolerance [whether temporary or permanent] will not damage your intestine, will not make you more susceptible to cancer, and will not make you anemic; however it will make you feel uncomfortable. * Celiacs do not normally get reactions to allergy skin tests for wheat. The allergy reaction to wheat is different from the reaction of true celiacs to the wheat protein gliadin. * Many autoimmune disorders seem to be connected with CD, including Type I (insulin-dependent) Diabetes, Graves Disease, Sjogren's Syndrome, Addison's Disease, Scleroderma, Chronic Active Hepatitis, Myasthenia Gravis, Systemic Lupus Erythematosus, and possibly Rheumotoid Arthritis. * There are many potential causes of villi damage, including: radiation therapy, chemotherapy, CD, Crohn's Disease, viral gastroenteritis, bacterial overgrowth, and immunodeficiency. Also, there are at least 20 diseases that resemble CD symptomatically. ..................................................... : : : Excerpts from the Westchester CS Support Group : : ---------------------------------------------- : : newsletter: April 1996 Sue Goldstein : : 9 Salem Place : : White Plains, NY 10605 : :...................................................: The "NO-GLUTEN" Solution, by Pat Cassady Redjou, is a cooking guide for people who are "sick and tired of being sick and tired". Among other things, it contains recipes for making your own chicken, meat, and vegetable broth. To order, send a money order for $26.95 (Washington residents should add $1.82 sales tax) to: Pat Redjou, The "NO-GLUTEN" Solution, Box 731, Brush Prairie, WA 98606-0731. -=-=-=-=-=-=- The Social Celiac Course 101: Arm yourself with these coping techniques when you attend a party: Chapter 1--Cocktails. When the bartender asks, "What's your poison?" this may not be so far off. Most hard liquors are likely made from one of the various grains that celiacs must avoid. There are a few relatively safe options: most wine, tequila, and rum. Or you can always opt for GF soda or juice; no one will be the wiser when you join in on the traditional party toast. Chapter 2--Hors D'oeuvres. These little critters will most likely be off your list. Most are wrapped in some sort of dough [or sauce] that is not likely to be GF. Fresh fruit or veggies may be your best hope. Better yet, keep a small bag of GF goodies with you to eat while everyone else stuffs themselves with pigs in a blanket. Chapter 3--Entrees: This gets a little more difficult, but don't despair. If you are celebrating in a restaurant, try to speak to the Chef or Maitre D' and advise them of your situation. If possible, try to reach them prior to the meal. Remember to stay away from anything with stuffings, dressings with unknown ingredients, or fried foods cooked in the same oil as breaded foods. When dining at a guest's house, offer to bring a homemade dish to contribute to the meal. Your host will be thankful for the help, and you will be sure to have at least one GF option when you eat. Chapter 4--Dessert: This is the time you may start to feel a little sorry for yourself. That is, until you see the stuffed look on your dining companions' faces. While you may opt for fresh fruit or a light GF Sorbet, they can barely speak or move because they are so full from that rich chocolate cake. So give yourself a pat on the back and remember, it's just one less hour on the treadmill for you at the gym.