THE SPRUE-NIK PRESS

       Published by the Tri-County Celiac Sprue Support Group,
       a chapter of CSA/USA, Inc. serving southeastern Michigan

Volume 8, Number 4                                          April 1999
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...........................................
: What's Inside                           :
: -------------                           :
: Miscellaneous Notes                     :
: Back to Basics                          :
: Notes for Making GF Bread and Soup      :
: Newsletter Roundup                      :
:    Cookie Making Tips                   :
:    The Importance of Exercise           :
:    When You're a Teen                   :
:    Doing Disney World Gluten-Free       :
:.........................................:

References Disclaimer
Miscellaneous Notes: -------------------- Wisconsin Celiac Meeting: The annual Wisconsin Celiac Meeting will be held on Saturday, April 24th, at St. Dennis Catholic School, 409 Dempsey Road, Madison, Wisconsin. The featured speaker is Dr. Joseph Murray, of the Mayo Clinic [formerly of the University of Iowa-ed.]. The program runs from 10:30 am to 3 pm, and includes a potluck lunch and commercial food sampling. The cost is $8.50 per person, with no charge for children under age 13. To register, send a check payable to Madison Area Gluten Intolerance Chapter to Kathy Borner, 405 Tyanna Court, Cottage Grove, WI 43427. Please include the number of celiacs and non-celiacs attending, as well as the number of children under age 13.
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Back to Basics -------------- summarized by Jim Lyles In March we held an informal "Back to Basics" meeting. We had some of the group leaders speak on various topics and answer questions. This article contains some highlights from that meeting. Tips from Mary Guerriero: * Try to strike a good balance between being totally paranoid about gluten and taking it too lightly. We don't want you to be afraid to leave your own kitchen, but we also don't want to see you going out for pizza and beer with the guys. * Use your restaurant card when you go out to eat. It helps to validate your need for special attention, and it helps the chef know what is and is not safe for you. * Remember that ingredients can change anytime. The barbecue sauce that was GF the last time you bought it, might not be GF the next time. * If you live with non-celiacs, then make sure that you mark all the gluten-free (GF) items with stickers. If possible, have one shelf in the pantry for GF products, and make sure the others in your home know not to touch anything on that shelf. (Why, you ask? GF items are costly; once they are gone you can't usually go to the local store and easily replace them; and finally, a non-celiac could contaminate your food items with bread crumbs, etc.) * Unless everyone in the house eats GF bread, you need to have a separate toaster that no one else uses, or use a toaster oven that you can wipe out each time you use it. * Use separate condiments or make sure the non-celiacs you live with know not to contaminate the condiments by dipping knives, spoons, etc. back in after touching regular bread. (Yes, those few crumbs really do matter--even if you don't get immediate symptoms, you are still damaging your gut.) * Don't lick envelopes and stamps; the glue may come from a gluten source. * When you are first diagnosed, shop the perimeter of your grocery store. Fresh fruits, vegetables, and meats are going to be safe and you will not be prepared to read and understand labels for awhile. Mary tells newly-diagnosed celiacs that if it has more than five ingredients, or ingredients you can't pronounce, then don't buy it. Later, after you begin to understand the diet better, you can start adding other ingredients that are safe. * Don't assume that every time something goes wrong it is because of gluten or CD. Celiacs are just as likely as non-celiacs to have other problems. Both celiacs and non-celiacs can sometimes have stomach aches due to viruses, spoiled food, other allergies/sensitivities, etc. * Vic's in Novi, on Grand River just east of Novi Road, carries Gluten-Free Pantry items. Ask your favorite health food store to carry GF products. Zerbo's in Livonia at Plymouth Road and Stark is setting up a GF section. * The best place to buy rice flour is at an Indian store; you pay $2.49 or less for 5 lbs. Examples are the Patel Brothers and the local India Grocers chain. You might also check Oriental stores for items such as potato starch and tapioca starch. * If you have e-mail, there is a free e-mail list for celiacs. It currently has over 2,800 subscribers. To subscribe send a message to listserv@maelstrom.stjohns.edu containing this line: SUBSCRIBE CELIAC Firstname Lastname * We do not currently have a GF list for fast food restaurants. If anyone would be willing to write to the major chains, obtain this information, and collect it together for distribution to the group, please let one of the officers (listed on the last page of this newsletter) know. * At McDonald's, Wendy's, and Burger King, the french fries should be safe so long as they are cooked in their own oil, separate from all other fried foods. Most fast food restaurants do cook the fries separately, so the taste isn't affected by other fried foods. Just be sure to ask at your local fast food restaurants. * Wendy's baked potatoes, with all the toppings, are GF. Their chili, taco salad (including sour cream), and taco chips are also GF. The GRILLED chicken breast is also GF, without the sauce; but don't confuse this with the breaded chicken breast which is not GF. Frosties are also GF. * Don't let celiac disease define who you are. You are a unique person with many traits and facets to your life, who just happens to have celiac disease. In a perfect world there would be no diseases, but as diseases go, celiac is real doable. The longer you are on the diet the more you will realize that you can substitute for just about anything that normally has gluten in it. Marcia Campbell speaks on the shopping guide: * The TCCSSG shopping guide contains items that are GF according to the manufacturers. We have letters on file to back these claims. None of the information is more than 18 months old at the time of printing. * Marcia encourages any member that contacts a manufacturer and receives a written reply, on company letterhead, to pass on such information to her. Just send it to the address listed on the shopping guide's cover. * In the back of the shopping guide is a list of mail-order vendors from which you can order GF products. From these vendors you can get mixes for pancakes, muffins, even pie crusts. * In the next shopping guide Marcia plans to expand the list of GF mail-order vendors. Marcia also plans to add a section that explains how to read a label and interpret the various ingredients. * Some products that appear to be GF are not listed due to cross-contamination concerns. For instance, some cereals have GF ingredients but are produced on the same lines as non-GF cereals. Or in some cases lines may be dusted with flour to prevent sticking. * Don't go nuts over cosmetics, hair sprays, shampoos, eye makeups, or creams for your hands and face (unless you lick your fingers). You can go crazy trying to keep track of gluten in these products. For toothpaste and lipstick you do have to be certain of the ingredients. But for products that you don't ingest, gluten should not be a concern. * Products that appeared in previous editions of the shopping guide may be missing from the current guide for several reasons. For instance, we didn't get an answer back from Edy's or Hellman's. That doesn't mean their products are not GF; it just means they didn't respond and the previous information was more than 18 months old. Some companies only respond every other year. In such cases, call the company and see what they can tell you. If they have good information, ask them to send it in writing and then pass it on to Marcia. Tips from the "floor": * Rice Dream Beverage, from Imagine Foods, is not GF because the enzymes used in processing it are derived from various grains including barley. [Ed. note: Imagine Foods does produce the following GF foods: Soy Dream Beverages; Imagine Natural Garden Vegetable Soups; Imagine Natural Pudding Snacks; and Rice Dream Desserts Plain, Carob, Chocolate, and Vanilla flavors ONLY. These products are GF because the processing utilizes either non-grain enzymes and/or corn based flavoring extracts.]<1> * McDonald's shakes, including the specialty flavors, are GF EXCEPT FOR CHOCOLATE. Ice cream and all the sundae toppings are GF (but ice cream cones obviously are not). * Don't judge whether or not a food is safe by your reactions to it. Some celiacs never react to eating gluten, until 30 years later their bones start breaking. Other celiacs react almost immediately, but may also have other sensitivities so the reaction may not be due to gluten. (Both celiacs and non-celiacs can get upset stomachs for a variety of reasons that have nothing to do with gluten.) Some people react some of the time but not all of the time. You really can't use how you react as a guide to whether or not a food is safe.
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Notes for Non-Celiacs Making GF Bread and Soup ---------------------------------------------- by the Lyles family Our church likes to hold family-oriented Wednesday night events during Lent, which begin with a simple soup and bread dinner. Different church members make the soup and bread each week. Of course, we know how "simple" that sort of thing generally is when you have two celiac children. But our pastor took a progressive stance: He decided that each week there would be at least one pot of soup and one loaf of bread that was gluten-free (GF), so that we would not have the burden of preparing both all six weeks. We talked about how best to accomplish this. We agreed that it would be possible to communicate enough information so that someone else could prepare soup that was GF. However, my wife and I decided that it wasn't practical to expect a non-celiac to make GF bread from scratch. So our "game plan" was to prepare six batches of dry ingredients for 1.5 lb. loaves of bread to give out to the bread baker, and then include a list of wet ingredients and directions for making the bread both manually and in a bread machine. This experiment was mostly a success. We had a mishap one time with the soup, but otherwise things worked out fine. To be on the safe side, we always brought some GF cup-of-soup (Lipton broccoli and cheese) and crackers (Elco, Hol-Grain, or Dietary Specialties) with us. Enclosed in this article are the instructions we passed out, for non-celiacs making GF soup and bread. You may be able to adapt them for your use in similar situations at church, school, social events, or holiday family meals. (The bread recipe's dry ingredients are from Butter-Basted Brown & White Bread, on pg. 39, in More From the Gluten-Free Gourmet, by Bette Hagman. We made one change: We added 1/4 tsp. of ascorbic acid crystals to the dry mix, so we could eliminate vinegar from the liquid ingredients.) Instructions for Gluten-Free Bread ---------------------------------- 1. The Ziploc bag contains all the dry ingredients needed to make a 1-1/2 pound loaf of bread, EXCEPT for the yeast. Please store it in your refrigerator until the day you make it, then get it out ahead of time and allow the ingredients to get back to room temperature. 2. You can make the bread by hand or in a bread machine. Separate directions are included below. 3. Please note that this bread is not like regular wheat bread, and we don't want you to think you are doing something wrong: A. The bread dries out very quickly. Please bake it the day it is to be served if possible. B. The dough has a texture between cake batter and cookie dough, so it is too gooey to knead. In a bread machine, it should have swirl lines on the top surface after mixing. C. This bread does not need to rise twice. If using a bread machine, run it empty through the first mixing cycle, or program it for 20 minutes mix, one hour rise, and 55 minutes bake. You may need to use a rubber spatula around the edges of your machine's pan during the mix cycle to be sure the flours mix evenly. 4. Contamination is a concern. If flour particles or crumbs from regular baked goods get mixed in with or fall on this bread, it will not be safe for those on a gluten-free (GF) diet. Please be sure bread machines are cleaned thoroughly, measuring cups are clean, grease used for pans has no crumbs in it, and that this bread gets sliced and wrapped or put in a container BEFORE the knife and cutting board are used for regular bread. Other ingredients needed: 4 tablespoons margarine, melted 3 eggs (or 2 eggs and 2 egg whites) 1-1/2 to 1-2/3 cups water (room temperature for bread machines, lukewarm otherwise) regular (not quick-rise) dry yeast (Red Star or Fleischmann's brand). Use 1 packet for a bread machine, or 1-1/2 packets for oven baking Bread Machine Directions: 1. Stir the yeast into the dry ingredients and set aside. 2. Beat the eggs lightly. Add the melted margarine and water to the eggs. 3. Add the ingredients to the bread machine in the order specified by your machine's owner's manual (wet then dry, or dry then wet). Refer to item 2-C above. 4. You should notice swirl lines on top of the dough after a few minutes of mixing. If the batter is too dry, add water 1 tablespoon at a time. If the batter is too wet, add cornstarch 1 tablespoon at a time (otherwise the bread WILL sink in the middle during baking!) Oven Baking Directions (1 large loaf or 18 muffins): 1. While the butter is melting, proof the yeast by dissolving 1 teaspoon of sugar in 2/3 cup warm water. Add 1-1/2 packets of yeast and wait until foamy. 2. Put the dry ingredients in a mixer bowl. Turn the mixer on low, and slowly add melted butter and the remaining 1 cup of warm water. Then add the eggs one at a time, and finally the yeast water. Beat on high for 3 minutes. 3. Spoon the dough into greased bread pan(s) or muffin tins. They should be no more than half-full. Cover loosely with plastic wrap or a towel, and let it rise in a warm place for approximately 1 hour, or until doubled in size. 4. Preheat the oven to 375 degrees F. 5. Bake, covering pans with foil after 10 minutes to prevent the top from burning. (It WILL burn if you don't.) Bake for: 9" x 5" pan -- 1 hour muffin tins -- 25 minutes smaller bread pans -- 35-45 minutes, depending on their size 6. Let cool in the pan for 5 minutes, then remove from the pan and cool completely on a wire rack. If you have any questions, please give us a call at ________________. Instructions for Gluten-Free Soups ---------------------------------- Gluten-free (GF) soups cannot have wheat (including wheat flour, bread crumbs, pasta, or any noodle), rye, barley, or oats; nor any ingredients made from these grains. Below we've listed various ingredients commonly used in soups, and categorized them for you so that you would know which are safe for people on a GF diet. If you have questions about any ingredient or brand, please give us a call at ________________. Never Safe: flour barley pasta (unless it is a special GF brand) croutons Always Safe: fresh vegetables and herbs plain canned vegetables (no thickeners or spices) milk dried peas and beans (no flavor packets) plain fresh meats plain salt and pepper tomato juice, including V-8 olive oil Crisco (regular or butter-flavored) butter or margarine, as long as it hasn't been in contact with bread crumbs from toast, etc. cornstarch Sometimes Safe--Only Use These Brands: bouillon--Herb-Ox, if labeled "No MSG" rice--use plain, non-seasoned varieties broths--Health Valley beef or chicken; Swanson vegetable ham--cannot contain modified food starch, caramel color, or "flavorings". Hillshire Farms and Kowalski are okay spices--McCormick's are safe if they don't list any ingredients, or if they don't list flour or wheat in the ingredients cheese--no blue-veined cheeses; also none that contain flavorings such as Taco seasoning. Otherwise, most regular cheeses are fine (but NOT Velveeta or other processed cheeses)
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Newsletter Roundup ------------------ Compiled by Jim Lyles This section contains excerpts from newsletters produced by other celiac groups. ............................................................. : : : Excerpts from _Gluten-Free News_ (Oregon) : : ----------------------------------------- : : Spring 1999 Portland/Vancouver Affiliate of GIG of NA : : 9525 SW 12th Drive : : Portland, OR 97219 : :...........................................................: Reducing Flatulence: [Okay, there's no delicate way to discuss this common problem--ed.] The primary odor-causing compound in human flatus (gas) is hydrogen sulfide, which is produced by bacteria found in the colon. Hydrogen sulfide may play a role in ulcerative colitis. Pepto-Bismol(r), whose active ingredient is bismuth subsalicylate, was tested to see if it would reduce the amount of hydrogen sulfide produced by the colon. Researchers found that bismuth subsalicylate bound avidly to hydrogen sulfide, thus dramatically reducing the odorous gas. A dosage of 524 mg. of bismuth subsalicylate, taken once per day, was enough to adequately reduce the odor from hydrogen sulfide. Five days after discontinuing bismuth subsalicylate, fecal hydrogen sulfide returned to normal level. The researchers concluded Pepto-Bismol(r) (bismuth subsalicylate) could provide clinically useful treatment for reducing excess fecal gas and/or odor, and provide a means for testing the role hydrogen sulfide plays in colitis.<2> [Dorothy Vaughan, our dietitian advisor, warns that before undertaking this remedy, you should discuss it with your health care professional.] ................................................................. : : : Excerpts from _Derby City Celiac_ : : --------------------------------- : : Spring 1999 Bill Banks, editor : : Greater Louisville Celiac Sprue Support Group : : PO Box 7194 : : Louisville, KY 40257-0194 : :...............................................................: Cookie-Making Tips from Marge Johannemann ----------------------------------------- 1. Marge thinks that real butter makes the best cookies. She recommends unsalted butter.. 2. Use brown rice flour or bean flour instead of white rice flour to provide extra fiber. 3. Omit potato starch and tapioca starch for a firmer, less fragile cookie. 4. Xanthan gum is not needed for cookies. 5. Natural sweeteners, such as raw sugar, beet sugar, or brown sugar, can be used in place of refined sugar for a healthier alternative. Natural sweeteners are metabolized faster and put less of a load on the pancreas, which is especially important for diabetics. 6. Replace 1/2 to 1 cup of rice or bean flour with soy flour for a chewy cookie. 7. Don't be afraid to experiment or adapt wheat recipes to be gluten- free. It's fun and provides variety! ............................................................... : : : Excerpts from the Gluten Intolerance Group of North America : : ----------------------------------------------------------- : : newsletter: 1st Quarter 1999 Cynthia Kupper, editor : : PO Box 23053 : : Seattle, WA 98102-0353 : :.............................................................: 1999 Summer Camp: GIG will go to camp with celiac children August 3-10, 1999, at Camp Sealth on Vashon Island in Washington State. Camp Sealth and GIG have worked together in previous years to provide a wonderful camping experience for celiac children in 2nd through 12th grades. The celiac children will be incorporated into cabins and programs with all other campers. They'll have a normal camping experience, with the added security of knowing their diet will be followed carefully. Cynthia Kupper, GIG's CEO and a registered dietitian, along with a staff of volunteers, will go to camp as cooks, to oversee the special diet needs of our celiac children; and will be well-equipped to handle other special diet needs. For more information, call GIG at 206-246-6652 or send them e-mail at gig@accessone.com. ............................................................... : : : Excerpts from the Houston Celiac-Sprue Support Group : : ---------------------------------------------------- : : newsletter: Jan./Feb. 1999 a href="mailto:txjanet@swbell.net" >Janet Y. Rinehart, President : : 11011 Chevy Chase : : Houston, TX 77042-2606 : :.............................................................: Product Information: * Adams Extract Co.: All spices and extracts are gluten-free (GF). The extracts are grain-based (corn). Even the spice mixtures such as chicken fajita seasoning, poultry seasonings, Italian seasonings, etc. are GF. Note that their bacon bits are NOT GF. For more information, write to PO Box 17008, Austin, TX 78760 or call 512-282-1100. < name=rndkroger> * Kroger beef and chicken cubes and granular forms (jar), as well as chicken broth (regular and fat free) are gluten-free. The beef broth (canned liquid) is not gluten-free. For more information, call 800-632-6900. -=-=- -=-=- "Easy, Successful, Gluten-Free Recipes", Volume 6, is now available from CSA/USA for $8. Volumes 1-5 have been revised and are available for the same price. Write to CSA/USA, Inc., PO Box 31700, Omaha, NE 68131-0700. [ed. note: The recipes in Vols. 1-5 are unchanged.] -=-=- -=-=- Homemade Stock Recipe: When you buy chicken, save the little packets (heart, gizzards, etc.) that come inside the chicken. Save the wings, too, and put them all in a plastic bag and throw them in the freezer. Also save the "gravy" and goodies left in the pan. If you cook a whole chicken, after serving, save the bones. When you get a full bag, place the contents in a big pot and cover with water. Add a carrot and onion, some herbs (no salt), and cook away for an hour or two. Strain out the solids. Then cook down until the liquid is reduced by half. Add salt to taste. You can then chill the broth to solidify the fat for easy removal. Store the broth in one or two cup measures in plastic bags in the freezer. .................................................... : : : Excerpts from the San Antonio CS Support Group : : ---------------------------------------------- : : newsletter: Jan. 1999 Lynn Rainwater, editor : : 1023 Cloverbrook : : San Antonio, TX 78245-1604 : :..................................................: The Importance of Exercise, by Jim Stoker ----------------------------------------- Physical fitness, it would seem, is particularly important for people with gluten intolerance. Many of us were diagnosed rather late in life and discovered we have osteoporosis or some form of bone thinning. Exercise puts pressure on the bones, encouraging them to grow stronger. As we all know, when on a gluten-free (GF) diet the villi in the small intestine begin to heal, allowing more nutrients to be absorbed. We can then utilize calcium much better, and our bones should strengthen if encouraged by strenuous athletic effort, at whatever level one is capable of achieving. One should always consult one's doctor before beginning any type of exercise program. Most physicians probably agree that the cardiovascular benefits of exercise are important. Articles published recently have described mild weight lifting programs involving patients at nursing homes. Even working with very light weights a few minutes a day increased the senior citizens' strength, mental outlook, and sense of well being. When thinking about weight lifting, one might have visions of body builders with massive muscles lifting 400-lb. barbells. Most people I see in weight rooms are ordinary looking individuals of all ages. Some are too thin or fat, most seem average in appearance. Many private facilities will allow you to work out for a fee. If you do not know what to do, instruction is available. Don't exhaust yourself. Do a light workout on various machines, lifting weights you can raise 10-15 times without too much strain. Exercise the torso, legs, arms. "Tummy crunches" help tighten the abdominal muscles. Start slowly and gradually increase the degree of difficulty over a long period of time. It's important to learn how to do stretching routines at the beginning of each session. Tight tendons can become sore. One can learn a great deal from people in weight rooms, simply by watching. Most more experienced people will be glad to show you how to use the equipment. But there are a variety of classes in every type o f physical activity, and private instruction is usually available. Almost everyone can benefit from lifting weights. There was an article in the San Antonio Express-News about a 78-year-old woman with an incredibly developed, muscular body, who was winning body building competitions! Exercise is not only for the young. In fact, as we grow older, the need for physical exertion probably increases. We lose muscle mass, strength, and bone density as we age. Physical activity slows this natural process, and , in some cases, can reverse the problem to some extent. The human body was developed over the eons to be used. Remember the adage, "Use it or lose it." One recent article reported research that stated exercise caused more blood to flow to the brain and increased mental alertness. Walking is good physical activity. A good schedule might be to eventually exercise for 30 minutes a day, five days a week. Start slowly and only slowly increase the degree of difficulty. It's important to set aside time for exercise on a precise schedule or you probably won't do it. In my opinion, a balanced program of weight lifting and walking or jogging is ideal. We know there is no fountain of youth, but regular use of one's muscles makes one feel and act younger. ...................................................................... : : : Excerpts from the Westchester CS Support Group : : ---------------------------------------------- : : newsletter: Feb. 1999 Leslie Elsner and Sue Goldstein, editors : : newsletter: Oct. 1998 9 Salem Place : : White Plains, NY 10605 : :....................................................................: When You're a Teen, by Jennifer Griffin --------------------------------------- Shortly after celebrating my Sweet Sixteen, I was diagnosed with celiac disease (CD). At first, I was so relieved that the doctors found out what was wrong with me. After months of feeling sick, the doctors finally knew what I was suffering from. To be honest with you, I was so happy that they were actually going to take me seriously, after months of telling me that nothing was wrong with me. I had no idea, though, of the long road to recovery that was ahead of me. When my doctor told me that I had CD, he didn't tell me of the feelings of isolation I would have following the diagnosis. I think these feelings were intensified because of my age. As a teenage celiac, I often feel out of the loop. The trips to McDonald's and the high school cafeteria often remind me that I am "different" than most teenagers, and leave my mouth watering. The strange looks I receive when a waiter puts a salad down on my plate, when the rest of my friends are eating hamburgers and fries, hurt my feelings. Now that I am beginning the college search, CD is becoming a larger part of my life, if you can even imagine that being possible. When I am looking into a school it is apparent that I am different than other high school juniors. Most teenagers ask about the social life when they visit college campuses. Not me. I ask if on-campus apartments are available. Although my diagnosis was only ten months ago, I have come to realize that a celiac has to be assertive. When you go to a restaurant, you have to make sure that the cook knows what gluten is. Being a teenager, it's often difficult to get people to take you seriously. I have often received nasty looks when I insist that the hamburger doesn't touch the hamburger bun. What the waitress or waiter doesn't understand is that I'm keeping myself from getting sick, not just being difficult. I think having a teenage support group would be extremely beneficial. We could talk to people our own age about the feelings we're having, certain circumstances we've been in, and could learn of helpful tips that would be useful in our lifestyle. Personally, I would love to hear some advice from people my own age about how to make the feelings of isolation less severe. My e-mail address is Jag1219@aol.com. -=-=- -=-=- Study: Body Mass in Celiacs<3> ------------------------------- Dr. Dickey and Shelagh Bodkin noticed that few of their new patients with CD were obviously malnourished. They conducted a prospective study of body mass index to investigate further. The study suggests that a minority of patients with villous atrophy fit the obviously-malnourished stereotype and that the possibility of CD should not be discounted in overweight patients. Many patients with gluten sensitivity have less severe small bowel damage<4> and may be even less likely to be underweight. -=-=- -=-=- Doing Disney World Gluten-Free, by Donna Griffin ------------------------------------------------ When we first made vacation plans to go to Disney World, our biggest dilemma was whether to drive to Orlando and save ourselves some money, or to fly and splurge a little. However, several months later our just "sweet sixteen" year old daughter, Jennifer, was diagnosed with celiac disease. Suddenly, the dilemma became whether to go at all! As parents of a newly-diagnosed celiac, we had our own issues to deal with, and after many months of Jennifer being ill, we were all emotionally drained. As her mom, I was determined to show Jenn (and frankly myself as well) that her life would be "normal" even without gluten. So began Jennifer's first sojourn as a celiac. Our first step was to call the Celiacs of Orlando support group. They were very helpful and suggested that I contact the executive chefs at each of the theme parks. I was still nave enough to think that someone at the central reservations number at Disney would surely have these phone numbers available. After several phone calls, I finally became aware of a special requests reservationist by the name of "Linda" at 407-939-7807, who magically (no pun intended) began to make things happen. She arranged for a refrigerator to be in the room at no extra charge; provided a brand new, still-in-the-box-unopened, toaster; and assisted me in making special gluten-free/lactose-free (GF/LF) meal reservations sixty days in advance, at full-service Disney restaurants. Perhaps most importantly, Linda provided me with the names and numbers of the (mysterious) executive chefs. She also e-mailed the concierge at the Disney resort where we were staying and advised them that they needed to get some GF/LF items in stock. This was not in place when we arrived, so I made an unhappy Mouseketeer phone call, and shortly thereafter, someone from Guest Relations at the resort itself went to "Chamberlain's" and brought GF waffles, cookies, and Lactaid milk directly to our room. So now everything seemed to be in place. Well, you know what they say about the best laid plans... As luck would have it, there was a lightning strike in central Florida the day we arrived, resulting in no natural gas for two days. This became an excuse at several locations, and a really good way to get me fired up, with or without the gas! I made an early morning call to "Brenda", the executive chef at the Magic Kingdom at 407-824-5967, who seemed genuinely upset at Jennifer's circumstance. Thankfully, the gas crisis was also over at this point. She e-mailed all of the remaining restaurants, even if they were in Epcot or MGM, putting them on a sort of "alert". Ultimately, this led to chefs personally contacting either Jennifer or myself and pre-ordering her meal. Even after this, there were still some rough spots, but good help was available. Marianne Hunnell (407-560-1238, pager 407-934-1180), the executive chef at MGM, was very helpful after Brenda's contact with her. She had done some work with the celiac support group in Orlando, and knew enough to try to coordinate Jennifer's meals at MGM so that there was some variety. Chef "Wendy" at the Prime Time Caf was especially thoughtful in her service. Although there is an executive chef at Epcot (407-560-7517), the communication was weak and we had a less than pleasant experience arranging for a much-awaited GF/LF Mexican meal. Ironically, the restaurant that was the most accommodating had the least amount of notice, and was the only place Jennifer chose to go to more than once: Spoodles on the Disney Boardwalk. They have a chef by the name of "Damian" who really went out of his way to make a special dinner and GF/LF fruit cobbler for dessert. Magic Kingdom restaurants also deserve some accolades: Cinderella's Royal Table served Jennifer a GF/LF breakfast fit for a queen, and someone at Tony's Town Square high-tailed it over to Adventureland to get a Dole Whip for dessert (there are two types; the one with no ice cream is GF/LF....yes, I called Dole beforehand at 800-232-8888). Before I leave the Magic Kingdom, some GF trivia: The french fries at Casey's at the end of Main Street are GF, as is the Magic Kingdom popcorn; and there is GF ice cream at the Cone Shop on Main Street. (Several of the full service restaurants had either Rice Dream or Tofutti on hand for us. [Editor's note: It is our understanding that Rice Dream is NOT GF, due to processing that is done with barley enzymes, even though the ingredient label reads okay.]) My best advice would be always to speak directly to the chef, have some emergency rations on hand just in case, and consider a condo or room with a kitchenette!
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References ---------- <1> "Re: Imagine Co.", by Jane Winkenwerder, from the CELIAC Listserv archives on the Internet, posted Dec. 22, 1998. To obtain a copy on the internet, go to http://maelstrom.stjohns.edu/archives/celiac.html and click on "December 1998, week 4." <2> "Bismuth Subsalicylate Markedly Decreases Hydrogen Sulfide Release in the Human Colon", FL Suarez, JK Furne, JR Springfield, and MD Levit, Research Dept. of the Minneapolis Veterans Affairs Medical Center; and the Dept. of Medicine, University of Minnesota. <3> "Prospective Study of Body mass Index in Patients with Coeliac Disease", William Dickey, consultant GI and Shelagh Bodkin, senior dietitian. British Medical Journal, Nov. 7, 1998, 317:1290. <4> "Gluten, major histocompatibility complex, and the small intestine. A molecular and immunobiologic approach to the spectrum of gluten sensitivity (celiac sprue)", Marsh MN. Gastroenterology 1992; 102:330-354.
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Tri-County Celiac Sprue Support Group Officials: ------------------------------------------------ Physician Advisor: Thomas Alexander, M.D. Pediatric Advisor: Robert Truding, M.D. Dietitian Advisor: Dorothy Vaughan, R.D. President: Mary Guerriero Vice President: Sue Gentilia Past President: Diane Morof Finance Committee: Tom Sullivan Secretary: Pam Murphy Newsletter Editor: Jim Lyles Contributing Editors: Tom & Carolyn Sullivan Group E-mail address: tccssg@yahoo.com Disclaimer: ----------- All recommendations, information, dietary suggestions, menus, shopping guide suggestions, medical updates, miscellaneous articles, and recipes in this newsletter are intended for the benefit of our members, readers, and the general public. No liability is assumed by the Tri-County Celiac Sprue Support Group or any of its members. Information in _The Sprue-nik Press_ has been approved by our physician and dietitian advisors. Individuals should consult with their physicians and dietitians before following any medical or dietary recommendations in _The Sprue-nik Press_. Original material used in _The Sprue-nik Press_ is placed in the public domain for the benefit of all celiacs. The information is not copyrighted to facilitate the easy exchange of celiac information. Feel free to reproduce any portion of this newsletter, unless it specifically states otherwise. All we ask is that you indicate where the information came from. _The Sprue-nik Press_ is published by the Tri-County Celiac Sprue Support Group (TCCSSG), a local chapter of CSA/USA located in southeast Michigan. Members receive this newsletter, a shopping guide, and a new member packet full of articles and useful information. Mail-in subscriptions are welcome. For subscription information, send a note to tccssg@yahoo.com.
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