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

Seventeenth Edition                                      February 1995

          : What's Inside                       Search For :
          : -------------                       ---------- :
          : Miscellaneous Notes  . . . . . . . . .   -1-   :
          : January Small Group Discussions  . . .   -2-   :
          : ACS Conference--Panel Discussion . . .   -3-   :
          : Highlights--1994 ACS Conference  . . .   -4-   :
          : Let's Get Organized  . . . . . . . . .   -5-   :

Miscellaneous Notes: ---------1---------- The American Celiac Society will hold this year's Celiac Sprue Conference on July 14-15 in Baltimore, Maryland. We got a lot out of last year's conference and will probably be sending some people again this year. Don't be fooled by these grains: Spelt and kamut are both classified on the grain chart as Triticum, which is the same as wheat. Both of the grains contain gluten, and should be entirely avoided by anyone who has celiac disease. If you find problems with food products not being appropriately labeled, contact the National Exchange for Food Labeling Education, Food & Nutrition Information, National Agriculture 304-10301 Baltimore Blvd., Beltsville, MD 20705-2351. The phone number is 301/504-5719. From Marion MacLeod: -------------------- A lot of people don't realize what perfect gravy can be made with rice flour and water. Just shake them up in a jar and add them to browned fat and salt. I have used rice flour to make gravy for years now, and so have my non-celiac daughters. The gravy will not lump up the way it sometimes does with wheat flour, and tastes much better than gravy made from corn starch. Chick pea (garbanzo bean) flour can be used in recipes that call for soy flour, with the same results. This can be handy for those of us that can not tolerate soy bean products. This tip comes from _Going Against the Grain_, by Phyllis Potts.

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Small Group Discussions from the January Meeting: ------------------------2------------------------ It is hard to capture on paper the results from five separate small-group discussions, but I'll try anyway. Here are some of the highlights: * Whenever you eat out, take the CSA/USA restaurant card with you. It helps to call ahead when visiting an unfamiliar restaurant. It also helps if you eat out on days and at times when the restaurant is not busy. * Be careful in following your dietitian's advice for celiac disease. Most dietitians don't know much about celiac disease, and could make some mistakes. If you have any doubts or questions, feel free to consult with our dietitian advisor, Dorothy Vaughan. Remember, not only is she a dietitian, she is also a celiac herself and must live with the same diet restrictions you have. * Some good area restaurants to try: Cooker's, Outback, Sweet Lorraine's, and Applebee's. * Communion at church: Some celiacs simply refuse to take the host. Some provide their own host, on a separate plate, to the priest/minister. Some ask to partake of the wine/juice in place of the bread. * Sembai rice crackers keep well and were highly recommended. * The Chocolate Truffles produced by Great Pacific Dessert Company appear to be gluten-free (according to the ingredients), and "are to die for" according to one of our chocoholic members. * Fearn produces a pancake and baking mix that is gluten-free and was highly recommended. (It's not quite at the "to die for" level, but none-the-less is very good.) * If you suffer from Dermatitis Herpeteformis (DH), you need to be careful in selecting shampoos. Some of them have wheat products in them, and apparently can cause fresh skin outbreaks in the scalps of DH sufferers. * When it comes to making pizza, everyone agreed that it is best to use Toni Richardson's recipe for pizza shells. Actually, it's a good rule of thumb to look for Toni's version of any recipe before trying any others.

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American Celiac Society--Panel Discussion --------------------3-------------------- summarized by Jim Lyles The American Celiac Society held a conference on June 10-11, 1994, during which a panel discussion was held. The panelists were: Ms. Nancy Anderson, MS, Ed Ms. Annette Bentley Dr. Alessio Fasano Laurie Schussel, RD Nancy Winouski, CPNP This panel fielded questions from the audience. This article summarizes some of the questions raised and the answers given by the panel. Q: I heard wheat starch is sometimes used as a binder in charcoal briquettes. Will gluten from the charcoal transfer onto the food that is cooked over it? A: None of the panelists had heard of this, and none could offer an opinion as to whether the food would be safe to eat. (Author's note: As of April 1994, Chef's Wood 100% Natural Mesquite Charcoal was listed as being gluten-free.) Q: What about natural flavorings? A: This is a catch-all term: If it is animal, vegetable, or even petroleum based, it can be considered "natural". (Author's note: There is no legal definition of the term "natural" with regard to food products.) Artificial flavorings tend to be chemical in nature, which means they are concocted in a lab instead of being extracted from plant, animal, or petroleum products. Natural flavorings could be extracted from sludge or by-products derived from grains, including wheat and barley. There is no way of knowing from the product label; you would have to write to the manufacturer to know for sure. Q: With all the limitations in what I can eat, how can I be sure to get a balanced diet? A: Look for products that are a good source of fiber. For example, brown rice flour, popcorn, and beans all contain a lot more fiber than white rice flour. Also fresh fruits and vegetables all have a lot of fiber, as well as many other important nutrients. Rice bran is a good source of supplemental fiber and is available from some of the mail order companies. Be careful when taking fiber supplements; some of them are not gluten-free. For example, only the plain unflavored variety of Metamucil is gluten-free; avoid the other varieties. The panelists that Fibercon was okay. Warning: If you've only recently been diagnosed and still suffer from bloating, beans will probably make you uncomfortable. You may want to avoid beans until the bloating symptom has disappeared. Q: Concerning fat content: Many recipes for bread, etc., contain a lot of butter, oil, eggs, mayonnaise, and other high fat foods. Since I have fewer choices on this diet, how can I reduce the amount of fat called for in recipes? A: First, look at your overall diet. Are there things that are easy to change? For example, switch from whole or 2% milk to 1/2% or skim milk. Do you buy leaner cuts of meat? Eat turkey and chicken more often. When you buy ground turkey or chicken, be sure to get the kind that does not include the skin. Next, look at the fats you pour or spread onto prepared foods: butter, salad dressings, etc. Are you using the lower-fat varieties of these products? Use them less frequently, and in smaller amounts. If you are having a weight problem, limit the fats you pour or spread onto foods. Most bakers have found you can use two egg whites instead of one egg in most recipes. You'll get better results if you beat the egg whites. (Author's note: You can also use Egg Beaters or a similar product, so long as the product is gluten-free.) However, it was pointed out that one to three eggs spread throughout an entire loaf of bread is not really a big source of fat or cholesterol. You'll get better results from reducing the fats you pour or spread onto foods. Fats are very calorie-dense. A teaspoon of fat is about 45 calories, whereas a teaspoon of sugar is only 15 calories. For example, a baked potato has about 80 calories, which isn't too bad. But if you add a tablespoon of butter, you've just added an additional 135 calories. Cutting back to a teaspoon of butter eliminates 90 calories, which is more than the potato itself has. Q: What can you tell me about the new home gluten test kits? A: In reality, these kits test for the presence of wheat, barley, and rye. It does not test for the presence of oats. Annette Bentley believes the test is fairly accurate. She tried it on a number of products. Gluten-free products tested negative, regular bread and other gluten-containing products tested positive. She believes you can rely on the test as long as you know the product does not contain oats. (Author's note: I would question the validity of the test. Does it pick up minute amounts of gluten, such as might be found in vinegar distilled from wheat? Since oats contain gluten, the test must not be detecting gluten itself, but some other agent found in wheat, rye, and barley, but not in oats. What if that other agent is removed during processing? Our group does not recommend using these tests.) Q: What about medications? A: There is an important difference between over-the-counter and prescription drugs. For prescription drugs, ALL ingredients must be listed. However, for over-the- counter drugs, only the active ingredients need to be listed. The inert ingredients might contain gluten, so if they are not listed you should avoid using the product. (Author's note: For medications, do not assume that "starch" means "corn starch", as it does with foods. The labeling laws regarding medications and foods are different in this respect.) With prescription drugs, often the generic equivalents have different inert ingredients. Therefore, when a doctor knows of your gluten-free diet and prescribes a drug, make sure the drug store does not substitute a generic equivalent. Have your doctor write "Dispense as Written" on the subscription form to avoid an unintended substitution.

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Miscellaneous Highlights from the 1994 American Celiac Society Conference ---------------------4--------------------- summarized by Jim Lyles The American Celiac Society held a conference on June 10-11, 1994. Three of the sessions have been summarized in separate articles. This article highlights the remaining sessions of the conference. I've grouped the comments by speaker. In some cases I've grouped comments from different times and settings. For instance, some of the information came from presentations, some from a question and answer session on Saturday, and some from informal conversations during lunch or dinner. Glen Gelber, Digestive Disease Coalition, on current legislation ---------------------------------------------------------------- There is a lot of value in contacting your congressman. Form letters, where you place a check by your opinion, are usually ignored. However, letters that you write yourself will get some attention. They will be read and responded to, at the least. A unified approach by a single national organization, with four or five specific goals or issues, gives you a better chance of getting the type of legislative action you want from the federal government. Mary Louise Endriecht, Pharmacia (a Swedish pharmaceutical company) ------------------------------------------------------------------- The incidence of celiac disease amongst children in Sweden appears to be 10 times as frequent as in Denmark, a neighboring country. The two populations probably have a similar genetic makeup. The difference may be that in Sweden, they go looking for celiac disease; whereas in Denmark, they wait until they find it. In Sweden, they take a more aggressive strategy; they look for celiac disease as a possible explanation of many symptoms. In Denmark and countries like the United State these same symptoms are unlikely to raise suspicions of celiac disease. This implies that in the United States there may be a large number of undiagnosed celiacs, because we don't go looking for the problem, and in many cases the symptoms aren't severe enough to be recognized. One-year-old celiacs in Sweden are healthy, chubby, cute kids. They don't have any symptoms of the celiac disease because it is detected before it becomes a problem. Annette Bentley, American Celiac Society Dietary Support Coalition ------------------------------------------------------------------ Untreated celiacs suffering from malabsorption often have psychological problems. These can be due, in part, to the effects of malnutrition on the brain. Most children and many adults return to a healthy mental state after responding to a gluten-free diet. However, after years of suffering from untreated celiac disease, some adults suffer lasting psychological effects even after the gut is healed and they are getting proper nutrition. Misinformation and conflicting information about what you can and can't eat is psychologically stressful for a celiac. This is compounded by the lack of knowledge that you doctor and/or nutritionist might have about the disease. For some celiacs, there can be problems getting health insurance. In some cases, celiac disease is considered a pre-existing condition, and any expenses related to celiac disease are not covered. One of the conference attendees involved in the insurance industry spoke on this point. He said that in New York and New Jersey this is not a problem. He could not speak about anywhere else, other than to state that he believed the trend was going to be similar all across the country, so that this should not be an issue for long. Annette encouraged involvement in a support group. A support group can be a group of local celiacs that meet regularly, or if you live in a remote area it can be a number of other celiacs that you call on the phone regularly. Use the support group; lean on each other and help each other; share moods and ideas. Dr. Joseph Murray, University of Iowa ------------------------------------- Duodenal ulcers occur in the same area of the small intestine where celiac damage occurs. This type of ulcer occurs more frequently in untreated celiacs than in the general population. This may be because the area is already damaged and more vulnerable to the bacteria that Dr. Murray believes is related to ulcers. Many patients with undiagnosed celiac disease are incorrectly labelled as having peptic ulcer disease. Question: Is there a connection between high cholesterol and celiac disease? The short answer is no. Many untreated celiacs tend to have low cholesterol because their damaged intestine doesn't absorb anything well, including cholesterol. As the gut heals, cholesterol levels tend to go up into the normal range. For some celiacs, just as with some non-celiacs, the cholesterol will continue to rise until it reaches an unsafe level. However, this does not happen any more often with celiacs as with non-celiacs. Untreated celiac women often have low estrogen levels and an erratic or non-existent menstrual cycle. In both men and women fertility can be affected and rarely is the major manifestation of celiac disease. For young untreated celiac girls, the onset of menarche can be delayed. Like so many other symptoms, these problems are caused by malabsorption. Once the gut heals, these problems are usually eliminated. Note: Women with a long history of malabsorption will sometimes reach menopause at a younger age; in some cases as early as in their late twenty's. The bloating and stomach distention associated with untreated celiac disease is probably being caused by poor digestion. Milk sugars are not being broken down, along with other sugars. Bacteria then convert these sugars to gas and liquid. If you are experiencing thisas a diagnosed celiac, then the first concern is: Are you really gluten-free? Most celiacs are lactose-intolerant when they are first diagnosed. However, about 95% are able to drink milk once the gut has healed. The remaining 5% represent those who would have had lactose intolerance even without the celiac disease. Celiac patients should be followed by a gastroenterologist or pediatric gastroenterologist with an interest in celiac disease. These may be hard to find. Check with a local celiac support group to get some suggestions. If you can't find a gastroenterologist interested in celiac disease, then you may be better off with an internist or general practitioner that has the disease, has a family member with the disease, or has at least shown an interest in learning more about the disease and is willing to talk about it. There is nothing better than a doctor that will listen to you with an open mind. For celiac-related blood tests, how important is the selection of the lab that does the testing? Results can vary from one lab to another. A person that has symptoms of the disease should not let negative test results convince him that he does not have celiac disease. He should consider a biopsy, to be sure of the results. Dr. Alessio Fasano, University of Maryland ------------------------------------------ A question was raised: Can a baby receive gluten through breast milk? Dr. Fasano stated that it has never been described that gluten can go through breast glands. A related question was raised: Can we get gluten by drinking milk from a cow that has eaten wheat? The answer is no. Nor can you get gluten by eating meat from an animal that has eaten wheat. Question: Is there an association between celiac disease and attention deficit or hyperactivity in children? Yes, but only for untreated celiacs. Once the child goes on a gluten-free diet, these problems tend to disappear. A related question: Is there a link between behavioral problems and celiac disease in children? Once again, the answer is yes, but only for untreated celiacs. It is the malnutrition that leads to the problem. Dr. J. Chopra, FDA, speaking on the new labeling laws. ------------------------------------------------------ One of the goals of the new labeling law was to highlight the more important nutrients. For example, in a healthy diet you get no more than 30% of your calories from fat. In this country, the average is about 37%. Therefore, the new labels stress fat content and break down the types of fat. Serving sizes have been standardized, to make comparison shopping easier. For example, carbonated beverage containers previously listed six, eight, and twelve ounces as serving sizes. Under the new law, the standardized serving size is eight ounces. Many of the vitamins and minerals listed on the old labels are no longer listed. Nutrients such as thiamin and riboflavin do not appear on the new label because most people get adequate amounts of these; they aren't a concern in this country. The daily percentages on the label are based on a daily intake of 2,000 calories. The average adult leading a sedentary lifestyle normally would maintain their current weight with 2,000 calories per day. The new law requires all ingredients to be listed. In the past, small amounts of an ingredient did not have to be listed. The new law states that any ingredient present in quantities of 10 parts per million or higher must be listed on the label. This should be a big help in eliminating unknown gluten contamination in processed foods. If fresh fruits and vegetables are coated with anything, then the coating must be listed as an ingredient on the packaging or on a placard posted with the produce in the store. These coatings are usually petroleum-based waxes, which do not cause celiacs any trouble. The new law requires manufacturers to immediately update the label whenever the ingredients of a product change.

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Let's Get Organized ---------5--------- by Kathy Wagerson Getting organized in the kitchen can be a little overwhelming for a newly diagnosed celiac. You should start by reviewing your herbs and spices. Do any of them have a wheat filler? (Curry, cinnamon, mustard, paprika, and turmeric are possibilities.) Also review flavorings, baking powder, and vinegars. When in doubt, throw it out (or save it for your non-celiac family members.) Next, you need to make it easy for all family members to keep track of which items are gluten-free (GF) and which ones aren't, so the GF products don't become cross- contaminated with traces of gluten. One method is to place bright stickers on all GF products. Another is to remove non-GF items from baking and cooking cupboards and store them away from the main kitchen area. There are a number of gluten-free flours and thickening agents available for you to used instead of wheat flour. Your new member packet contains a list of these items, and explains how each can be used. It also contains a chart showing various combinations and quantities of flours you can substitute for one cup of wheat flour. You might find it convenient to fasten this list and chart to the inside cupboard door where you keep these products. You can add your own notations to the list as you gain experience in baking with these flours. Some of the GF flours and thickeners have a longer shelf life than others. Those with a shorter shelf life should be kept in the freezer to maintain good flavor. I keep my flours and thickeners as follows: Shelf Freezer ----------------------------------- ---------------- rice flour corn flour brown rice flour sweet rice flour cornstarch rice bran potato starch flour xanthan gum rice polish tapioca flour/starch guar gum soy flour methylcellullose Betty Hagman is the author of The Gluten-Free Gourmet and More From the Gluten-Free Gourmet. She describes a GF mixture used in many of her recipes. I keep a canister containing the GF mixture in my cupboard. To make the GF mixture, combine: 2 cups white rice flour 2/3 cup potato starch flour 1/3 cup tapioca flour/starch Note that white rice flour and brown rice flour can be used interchangeably except where the color is important. Potato flour is not the same as potato starch flour. Potato flour is a heavy flour that can often be replaced with GF potato buds or mashed potatoes. When adding xanthan gum as a binder in recipes, be sure to mix it in well with the flours. A general rule of thumb is: for cakes: 1/4 teaspoon per cup of GF flour for breads: 1 teaspoon per cup of GF flour for pizza crust: 2 teaspoons per cup of GF flour When making up GF breads, cakes, etc., I find it handy to prepare two batches of the dry ingredients and then save one of them for another day. This cuts out a lot of prep time every other time you bake. Save your stale GF bread and your baking mistakes; these can be used to make stuffing. To make them into bread crumbs, dry them in single layers in your oven, with the temperature at 200 degrees, then put them in a blender or food processor and grind them into crumbs. The crumbs can then be stored in the freezer for future use. You can make a pie crust with stale GF cookies, flavored rice crackers, or crushed GF cereal. Just add sugar and melted margarine/butter, shake, and spread out in a pie pan. Add a little sugar and cinnamon to achieve a taste like graham cracker crumbs. Try to set up and plan several meals each week. Plan a crockpot meal for days when you are especially busy. Prepare the ingredients the night before and store them in the refrigerator. Put the crock on the base in the morning, set a timer, and your meal will be ready and waiting for you at dinner time. I recommend using fresh mushrooms over canned ones; they add much more flavor and body. You can just slice them and then store them in the freezer until they are needed. Save leftover gravies, or make double, and then freeze them in one-cup portions. These work great in casseroles and soups. Freeze single portion meals for lunches and dinners. These work well if gluten meals are being served and you don't feel like cooking double. Make ahead GF cream soups and sauces; store these in the freezer in one-cup portions also. Freeze chicken broth/stock in ice cube trays and transfer them to plastic bags. You can then use them right out of the freezer like bullion cubes in gravies, soups, sauces, casseroles, or in the boiling water for rice. You can substitute rice in casseroles that call for noodles: 1-1/4 cups of rice replaces 8-12 ounces of noodles. Add the rice to the pan after the spices are added and 1-2 cups of water (depending on the other liquids used in the recipe). Cover and cook for 20 minutes on low heat; stir 2-3 times to keep from sticking. Add water and other liquids as needed. I also like to bake ahead and freeze pizza shells, hamburger or sandwich buns, frosted cupcakes, etc. When the mood strikes, or the need (such as a party) I have GF foods at my fingertips. Along with the pizza shells I also freeze shredded cheese; it can be applied to the shells frozen. If you shred the cheese yourself, you will need to add about a tablespoon of cornstarch to the cheese and shake it up thoroughly to prevent it from clumping together. After you've gotten your kitchen organized, you'll need to think about organizing all those GF recipes you'll be collecting at celiac meetings and exchanging with other celiac friends. Assemble your favorite "loose" recipes in one place and categorize them. Separate the ones you've tried (and liked) from the ones that you have not yet tried. I try to date them and note where (or whom) I got them from. There are a number of ways you might try organizing your recipes: * Place them on index cards and keep them in a card file. * Place them in a three-ring (loose leaf) binder. * Use six or eight spiral notebooks, one for each major category. * Use four or five inexpensive photo albums with clear plastic covers that pull away; affix the recipes under the plastic covers. * Mark the categories on the flaps of an accordion-style pocket file holder and then insert loose recipes into the appropriate category pockets. Whatever system you use, remember to leave lots of room for expansion and growth! As you read a cookbook, mark the index when you find a recipe that sounds good and is GF. Mark it with colored ink or a highlighter so that it's easy to find again. I like to keep frequently used recipes at my fingertips. I place these in a magnet with a clip and I keep them on the refrigerator. When I use one of the recipes, I put it on the top of the stack and then move the magnet onto my range hood for easy reference. Whenever I use a recipe, I make notes right on it including the date I tried it, how I liked it, and what changes I might want to try making to the recipe the next time I use it. Try to keep GF staples on hand for an emergency: cornstarch, milk substitutes, corn cooking oil, GF chocolate bits (I have my own definition of "staples"), GF flours, GF cereals, GF noodles, and possible GF box mixes for breads, brownies, muffins, cakes, etc. Set up a quick cook pantry, selecting the foods your family likes best. Stock only a few cans of each item. If you don't have room in the kitchen, try the floor of a closet or a shelf. These stores will come in handy in weather emergency or perhaps just before payday. Being diagnosed with celiac sprue doesn't have to turn you and your kitchen inside out. Being gluten-free is not the end of the world. I have found it's the beginning of cooking and baking healthier foods that I would have never tried otherwise. The satisfaction of making these foods myself has been rewarding beyond measure. Good luck and get organized! Tri-County Celiac Sprue Support Group Officials: ------------------------------------------------ Physician Advisor: Thomas Alexander, M.D. Dietitian Advisor: Dorothy Vaughan, R.D. President: Jim Lyles Vice President: Diane Morof Past President: Kathy Davis Treasurer: Kathy Wagerson Secretary: Denise Parsons Newsletter Editor: Jim Lyles ( Contributing Editor: Judy Hafner ( 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 not been submitted for approval to the CSA/USA medical board; however it 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 an e-mail note to Jim Lyles, at the e-mail address listed above.
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