THE SPRUE-NIK PRESS

THE SPRUE-NIK PRESS Published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan Twenty-Third Edition September 1995 ********************************************************************** .................................................. : What's Inside Search For : : ------------- ---------- : : Celiac Coalition . . . . . . . . . . . -1- : : Baltimore Conference Summaries . . . . -2- : : Recipe Page . . . . . . . . . . . . . -3- : :................................................:

Disclaimer

Celiac Coalition: --------1-------- We have just received notification of an exciting development for celiacs in this country. Representatives from support groups around the country met at a celiac conference recently to discuss forming a national coalition for the benefit of all celiacs. Drs. Alessio Fasano and Joseph Murray were asked to volunteer their time as advisors to the coalition, and they have agreed. (Drs. Fasano and Murray are staff gastroenterologists at clinics in Baltimore and Iowa City, specializing in the treatment of celiac disease.) This effort will begin with a meeting in Chicago on November 4th and 5th. Celiac groups all across the nation have been invited to send representatives to this meeting. We are excited by the possibilities this coalition may bring. This coalition will not take the place of any current national or local organizations. In fact, as I understand it, national organizations such as CSA/USA (which we are affiliated with) have been invited to the meeting along with all the support groups. All groups are encouraged to continue in their current work and with their current affiliations. We are currently planning to send three of our people to the meeting, subject to membership approval at our September '95 meeting: Dr. Alexander, our physician advisor; Diane Morof, our president; and Jim Lyles, newsletter editor and previous president. The coalition will allow celiacs throughout the country to speak with one voice on issues of national concern, such as: * Getting funding for medical research. * Influencing labeling laws and the policing of these laws to make it easier for celiacs to find GF foods. * Making commercial manufacturers aware of the number of celiacs and the size of the market to which GF products can be sold. * Increasing the awareness of celiac disease, especially in the medical community, and helping to update the techniques used in diagnosing and treating celiac disease. We think this is an important event, a milestone in the affairs of celiacs in the U.S., and we hope that all celiac support groups throughout the country will send representatives to this meeting.

Return to the Table of Contents

Summaries from the Baltimore Conference -------------------2------------------- The University of Maryland School of Medicine sponsored a conference on July 14-15, 1995 entitled "Celiac Disease: The Dark Side of the Gastrointestinal Planet". Eight of our group members attended this excellent conference. In the last Sprue-nik Press, we included highlights from one of the talks at the conference; here we share with you highlights of several more talks from the conference. These will be presented here in the same order as they were presented at the conference. ............................................................... : Epidemiology of the Disease in Europe and in U.S. : : ------------------------------------------------- : : (Problems, Pitfalls of Published Studies; : : Factors Affecting the Incidence of the Disease; : : Criteria for Future Epidemiologic Studies) : : by Salvatore Auricchio, MD summarized by Mary Guerriero : :.............................................................: Dr. Auricchio is Professor and Chairman of Pediatrics at the University Frederico II in Naples, Italy. A great deal of Dr. Auricchio's talk stressed the need for research into celiac disease (CD). In Europe, the surveys have shown a high incidence of CD-one in every 200-300 people. In the absence of population studies, how can we ascertain how many people in the U.S. are celiacs? In the past, people were diagnosed if they were symptomatic and had severe intestinal lesions. Now the focus should be to take measures to ensure earlier diagnosis. This can be obtained by screening high risk groups, such as family members of diagnosed celiacs; also people who have insulin dependent diabetes and Down's syndrome. Does diagnosing CD take away diabetes or Down's syndrome? No, but it certainly could vastly improve the quality of life for these patients. By screening large groups, such as all those admitted to a hospital or all blood donors (using anti-gliadin and anti-endomysial serology tests) many cases of "silent" CD have been found. Dr. Auricchio feels that classic celiac disease is only the tip of the iceberg. Villus atrophy may not occur in "latent" celiacs who have other features of CD. There are many people that show only one symptom, others don't show any. In Europe, diagnosis at an early age is declining. It is believed this is due to prolonged breast feeding, which delays the introduction of gluten into the diet. The majority of cases were determined at school age or later. A 1994 European study showed that in the previous five years, the incidence of CD was about one in 300 in Sweden, when active screening took place. In Finland, when blood donors were tested, one in 270 were shown to be silent celiacs (non-symptomatic with severe intestinal lesions). In Italy, where school children were tested, one in 250 were found to be celiacs. In the U.S., it is generally believed that CD is rare, even in the segment of the population that is genetically similar to the Europeans described previously. If this is true, Dr. Auricchio would be extremely surprised. At this point Dr. Auricchio began taking questions from the floor: Q: What is the earliest time of life at which you can begin to develop the anti-gliadin and anti-endomysial antibodies, and is it necessary to be exposed to gliadin to develop them? A: The youngest age could be only a few weeks after introducing gliadin to the diet. You do need to eat gliadin to form these antibodies; if you are on a GF diet these antibodies will not be present. Q: It has been suggested that the degree of intermarriages between the various ethnic groups explains the apparently lower incidence of CD in the U.S. Do you think this may be correct? A: No, not at all. Studies of the groups in the U.S. with the same genetic background as groups in Europe show a much lower incidence of CD. It is more likely that CD is underdiagnosed in the U.S. Q: What is the incidence of CD in non-Caucasians? A: There are cases, but the rate of incidence is unknown. A study from North Africa suggests the disease is frequent there, but there were no statistics from the study. ......................................................... : Clinical Presentation of Celiac Disease in Adults : : ------------------------------------------------- : : by Joseph Murray, MD summarized by Mary Guerriero : : & Jim Lyles : :.......................................................: Dr. Murray is Assistant Professor of Medicine, Division of Gastroenterology, at the University of Iowa, where they treat over 500 celiac patients. Dr. Murray would like to see the U.S. doing research on CD at the same level the Europeans are doing. There are very few researchers in the U.S. doing sophisticated research in this area. An exception is Dr. Kagnoff in San Diego. The most common symptoms of CD include extreme diarrhea, flatulence, bloating, and weight loss. The malabsorption associated with CD can cause deficiencies in vitamins E, A, and K, as well as calcium and folic acid. These substances are primarily absorbed in the first third of the small intestine, which is the area most affected by CD. Poor digestion means food is not broken down as it should be. For example, a milk sugar called lactose is normally broken down by an enzyme produced in the tips of the villi in the small intestine. In active CD these tips are damaged, so that the enzyme is not produced, leading to poor digestion of lactose and an apparent milk intolerance. Because we are so closely associated with CD, we may wonder why physicians don't diagnose it more often. Dr. Murray said in medical school students are taught "pattern recognition" or "disease patterns". When a patient comes to them, they learn to recognize certain symptoms and associate certain diseases/conditions with those symptoms. With celiacs, the symptoms can vary so widely that there is no particular pattern for the average physician to recognize. He then went through a list of patients with varying symptoms to illustrate the problem. This can make CD very difficult to suspect. What symptoms do active celiacs show at the time of diagnosis? Along with the "typical" symptoms, there are also some more unusual manifestations of CD: chronic fatigue neurologic problems lymphocytic colitis or pancreatitis lymphoma IgA deficiency Some common misconceptions: * "If you are constipated, then you can't have CD." This is not true. * "If you are obese, then you can't have CD." This is not true. * "If you are tall, then you can't have CD." Dr. Murray has three female CD patients who are over six feet tall. Dr. Murray believes we should screen all type I diabetics for CD, especially Caucasians. What should you do if you feel you have CD and are not being heard by your physician? Go in with written material about CD. Physicians are more apt to pay attention to what you are saying if you have something in writing. If you are diagnosed, but still have unexplained symptoms, be persistent. You, and no one else, are responsible for treating your disease, so take it seriously. We need to make others aware of CD, so we can get funding for research and be recognized as having a legitimate and potentially serious illness. Dr. Murray responded to some questions from the floor: Q: What effect does ingesting alcohol have on Celiacs? A: There are two questions to consider: 1. For example, does alcohol distilled from wheat or barley contain gluten? In the lab it can probably be shown that no gluten will make it into the distillate; but in commercial distillations is this true? We don't really know. 2. If you have increased permeability in the gut (as in untreated CD) you may get a higher amount of the alcohol than normal. Q: Are there routine tests that a celiac patient should periodically have? What about repeat biopsies? A: Dr. Murray routinely does gliadin and endomysial testing on a yearly basis. If a patient is doing well on the GF diet, and has negative gliadin and endomysial test results, then a repeat biopsy is probably not necessary. However, for patients diagnosed at an older age (approximately 35 years of age or more) or with neurologic complications, Dr. Murray will normally perform a repeat biopsy. Also, in patients where he is not sure of compliance to a GF diet, Dr. Murray will rebiopsy every five years to ensure that they have healed and are remaining healed. Q: Are there other diseases that cause atrophy of the villi and can be confused with CD? A: Yes, there may be as many as 50 other diseases. However, in a Caucasian American, the most likely cause of total villus atrophy is CD. In centers with a very large African-American population or with a large concentration of HIV-infected people then HIV may be the number one cause of villus atrophy. But there are approximately 177 million non-Spanish Caucasian Americans for which CD is the most likely cause of total villus atrophy. ............................................................ : Clinical Presentation of Celiac Disease in Children : : --------------------------------------------------- : : by Ivor D. Hill, MB, ChB, MD summarized by Jim Lyles : :..........................................................: Dr. Hill is Professor of Pediatrics and clinical director of Pediatric Gastroenterology & Nutrition at the University of Maryland School of Medicine. Historically, CD was seen more frequently in children than in adults, and was characterized by malabsorption, diarrhea, and failure to thrive starting at an early age. This has changed quite a bit over the last two decades, for reasons that are not altogether clear. The symptoms being presented vary quite a bit, and are often not gastrointestinal in nature. Also, the age at which symptoms begin appears to have increased significantly. The severity of the disease seems to vary quite a bit as well. Today we have to accept that CD can affect many different organ systems in the body. Unfortunately, this message is not filtering down to the students in our medical schools. Students are being taught the classical symptoms of CD, and are not taught to look for all the unusual ways in which an undiagnosed celiac patient might present symptoms. Presentation of CD in children falls into three categories, each of which will be discussed further. "Classical" Early Presentation ------------------------------ This was previously the most common form, but is becoming less common today except in Sweden and southern Italy where 80% of the diagnoses are made under the age of 2. In this category, children usually begin showing symptoms between six and eighteen months of age, coinciding roughly with the introduction of gluten into the diet. Up to 25% of children showed symptoms within a month of introducing gluten to the diet. In most cases symptoms come on gradually. Stools become progressively loose and more frequent, and are often pale and bulky with an offensive odor. Diarrhea is accompanied by a failure to gain weight satisfactorily or even a loss of weight. The child becomes progressively malnourished and develops abdominal distention with subcutaneous fat loss and muscle wasting. Although weight is affected first, eventually height is affected as well. There is progressive misery and irritability. There may be regression of development such as losing the ability to walk. Occasionally CD comes on very suddenly with severe diarrhea and vomiting, leading to dehydration and what is called a "celiac crisis". Conversely, there a some cases where the child has no diarrhea and in some cases constipation becomes a problem. Late Gastrointestinal Presentation ---------------------------------- This is becoming more of the norm. Almost half the newly diagnosed cases are six years of age or older. The symptoms are still gastrointestinal in nature, but are much milder. Diarrhea is still the most frequent symptom, though it may come and go. Nausea and vomiting occur in up to 30% of the cases, usually during bouts of diarrhea. These symptoms tend to be less severe than in very young patients. A smaller number of patients experience frequent abdominal pain. Most patients in this group describe vague abdominal discomfort and feelings of bloating if specifically asked. Loss of appetite is a common complaint, but it some cases there is an excessive need for food, perhaps to compensate for the malabsorption of nutrients that occurs as a result of the intestinal mucosal damage found in CD. Most patients eventually experience unsatisfactory weight gain or even weight loss. Conversely, those that experience an increase in appetite may actually have an excessive weight gain for a short period of time. Gastrointestinal symptoms are often accompanied by feelings of lethargy and poor health. Moodiness and irritability are also characteristic of the disease. Non-Gastrointestinal Presentation --------------------------------- CD can affect virtually any organ system: * The musculoskeletal system: Short stature, tooth enamel defects, osteoporosis (loss of bone mass) and osteomalacia (softening of the bones), arthritis, and arthralgia are all areas that can be affected by active CD. In some cases, short stature is the ONLY symptom initially. Linear growth is affected. In these cases, the child may not have an appearance of wasting; his weight may be appropriate for his height In various studies it has been estimated that 5-24% of children attending a clinic for short stature for which no reason has been found had CD as the cause of short stature. In some cases these children have a depressed level of growth hormones. However, when CD is the cause of the short stature, the child does not respond to growth hormone treatments. The response to a GF diet is pretty good prior to puberty; in most cases they can "catch up" in their growth. If the diagnosis is missed until after puberty and after they have completed their growth spurt, they will forever be short. That is one reason why early diagnosis is important. Tooth enamel defects are another interesting manifestation of CD. It affects the permanent teeth, and the effect is distributed symmetrically in the mouth. It is such a characteristic finding that some dentists, if they are aware of it, can even refer patients depending on what they find while looking at teeth. The onset of this condition occurs before the age of seven, when the permanent teeth are being formed. Early detection of CD is important in these cases, as this effect is permanent and can eventually lead to the destruction of the permanent teeth. * Skin and mucous membranes: This system can be affected in many ways. Dermatitis herpetiformis (DH) is one of the well-known effects of CD in some patients. There may be an association between atopic (widespread or nonspecific) dermatitis and CD as well. Aphthous dermatitis (stomatitis) and hives can also occur. DH is interesting because a patient with DH often has no gastrointestinal symptoms, yet when a duodenal biopsy is performed villi damage is usually found. DH is normally found in celiacs between the ages of 15-40, but it is occasionally found in even very young children. * The hematological (blood and circulatory) system: CD can affect this system in many ways: anemia, a decrease in the white cell count, a decrease in platelets, and bleeding problems due to a decrease in clotting factors. Anemia is the most common hematological symptom, and can be caused by an iron, B-12, or folate deficiency. B- 12 deficiency is very unusual in children, the other two forms of anemia occur more frequently. Vitamin K deficiency can also occur, because vitamin K is a fat soluble and celiacs often have trouble absorbing fats. Vitamin K is important in producing clotting factors. * The central nervous system: These symptoms can mostly be categorized as behavioral changes or epilepsy. Kids with CD-related behavioral changes can be extremely irritable. They seem cranky non-stop all day long and even when they are sleeping. They have temper tantrums and show marked separation anxiety. They can also show marked emotional withdrawal. Some have even shown symptoms consistent with autism, though this is a controversial subject which Dr. Hill did not go into. He said that there might be a link between CD and autism, but was careful to point out that not every case of autism would be improved by a GF diet. Why does CD affect behavior in some children? It has been shown that a specific peptide chain in the gliadin molecule is what actually causes the toxic reaction in celiacs. It turns out that this peptide sequence is very similar to that found in certain endorphins. Endorphins are produced by the body and affect brain chemistry. Therefore, it could be that gliadin affects the brain chemistry, which would certainly lead to behavioral changes. There is a strong correlation between epilepsy and CD, especially when there has been calcification of the brain. There have been reports of a GF diet reversing the calcification and reducing or eliminating the seizures associated with epilepsy, though this may not occur in the majority of the cases. * The reproductive system: This system is not generally affected until puberty. Sometimes there is a delay in the beginning of puberty in both males and females. This can be associated with delayed growth and short stature, but it also occurs sometimes as an isolated feature. In later life there can be a problem with fertility and recurrent spontaneous abortions. When there is a delay in puberty, the body usually responds dramatically to a GF diet. In summary, Dr. Hill believes that pediatricians need to start getting the message out that CD is a highly variable disease. We cannot afford to sit back and be blase' about this condition; if we don't actively look for it in children we will often miss the diagnosis. At this point Dr. Hill began taking questions from the floor: Q: A celiac asks: I have three children with no symptoms of CD. Should I have them get the blood test? When should they be retested? A: The blood test is a good start in screening for CD. If it comes back positive, then you can go on and look for a firm diagnosis. If it comes back negative, they probably don't need to be retested unless they develop one or more symptoms. (Watch for unusual symptoms!) Q: A woman states: My mother said I was sick from the time I was born, though I wasn't diagnosed until a few years later. Is it possible to have CD symptoms immediately after birth? A: This is not very probable. The generally accepted belief is that you must first have gluten introduced to the diet before you can develop CD. There is a slight possibility, and this is highly controversial, that some of the toxic peptides can come through in breast milk. Q: With the potential effect of gliadin on the brain chemistry you described, should celiacs avoid drugs such as morphine which also affect brain chemistry? A: No, not at all. Morphine can be very effective when used properly. The discussion of gliadin and brain chemistry was merely meant to help explain why gliadin might cause behavioral changes. Q: My celiac child has responded well to a GF diet, but doesn't seem to have as much of an appetite as non-celiac children. Should I be concerned? A: I would not be concerned about a child's appetite if he or she continues to grow satisfactorily. Your appetite can go up when you are malabsorbing to try to compensate for the failure to absorb sufficient nutrients. When you correct the underlying problem that is causing the malabsorption, often the appetite does fall off as there is no longer a need to "overeat" to compensate for poor absorption. Q: My son was diagnosed at age 7, and has "caught up" to the growth curve. Will his adult height be affected by his time as an undiagnosed celiac? A: Everyone has a certain growth potential. If celiac children follow a strict GF diet, they should return to their own individual growth curves and eventually reach their full growth potential. Q: My child was at the 90th percentile at six months of age. His growth then fell off dramatically and eventually his short stature led to a diagnosis of CD. He is now back at the 50th percentile and holding steady there. Should I be concerned that he has not gone back up to the 90th percentile? A: I wouldn't get too hung up about the 90th percentile at six months of life. That growth phase is not necessarily related to what the growth potential is going to be. If he was at that level at four or five years of age then you might make a case for that being his normal level. ................................................................... : Unusual Manifestations of, and Conditions Associated with, CD : : ------------------------------------------------------------- : : by Markku Maki, MD summarized by Kathy Davis & Jim Lyles : :.................................................................: Dr. Maki is Professor of Pediatrics at the University of Tampere in Finland. The classic textbook cases of malabsorbing patients with thin, wasted bodies, protruding bellies, and chronic diarrhea are very misleading. Of course, such a patient may have CD. But most celiacs do not have severe symptoms such as these. Of the children diagnosed, few have the "classical" symptoms. In Finland, the median age of diagnosis in children has been rising since the 1960's, to the present level of about 7 or 8 years of age. When a child's growth fails to follow the normal growth curves, the possibility of CD should be investigated even if there are no other apparent symptoms. The latest diagnostic strategy for detecting CD includes: 1. Looking for CD even in the absence of abdominal symptoms. 2. Performing duodenal biopsies whenever gastroscopies are performed. 3. Liberal use of serologic (blood) screening tests. A diagnosis of CD should be considered in: * patients with traditional symptoms, even when the symptoms are mild or there is only one symptom. * patients with symptoms recently recognized as being linked with CD, such as dermatitis herpetiformis (DH), permanent-tooth enamel hypoplasia, recurring aphthous stomatitis (mouth sores), joint problems, arthralgia (joint pain), and arthritis. * special cases often associated with CD, such as all first-degree relatives of celiac patients and anyone with selective IgA deficiency. * associated diseases such as Down's syndrome, insulin dependent diabetes, Sjogren's syndrome, thyroiditis, chronic liver diseases, epilepsy, and cerebral calcifications. There are other situations that can lead to a diagnosis of CD: * Patients are screened with serum testing (anti-gliadin, anti-endomysial, and anti- reticulin antibodies), followed by biopsy. * Patients have been diagnosed with DH and CD in the same families. * There does seem to be a correlation between epilepsy and CD. * A diagnosis of CD has been made in patients with so called celiac-type dental lesions in the permanent teeth. * CD has been diagnosed in patients with dementia [mental deterioration brought on by organic disorders-ed.], usually young adults with atrophy of the cerebella. (This is highly unusual.) * Joint pain and arthralgia can be symptoms of CD. * In diabetics, CD is often diagnosed 5-10 years after the diagnosis of diabetes. A hospital in Finland looked at 188 diagnosed celiac patients. Of these, 43 (23%) showed typical malabsorption, 64 (34%) presented with abdominal pain and mild dyspepsia, and the remaining 81 (43%) had symptoms that were not gastrointestinal in nature. At this point Dr. Maki began taking questions from the floor: Q: You spoke of dental lesions. Have you come across a case where an adult diagnosed with CD had lost his/her teeth as a child? A: A complete loss of teeth? No. Q: Is it possible to be IgA deficient and also have DH? A: No. DH is caused by IgA deposits under the skin. If you are IgA deficient you can't have these deposits. I'm not aware of any DH patient with IgA deficiency and IgG deposits under the skin. Q: (From Dr. Murray) Adding duodenal biopsies whenever gastroscopies are done increases costs by about $200. How can we justify this to insurance companies? A: What is needed is some sort of cost effectiveness study involving a large number of patients, to show the extent of the problem with undiagnosed CD and how much it costs in the long term. Adding a few hundred dollars now to this procedure could potentially save insurance companies many thousands of dollars later. The same line of thought can be used to justify the rather low cost of the blood screening tests. Q: I'm a celiac. My mother was told she had a wheat allergy as a child, and often breaks out in hives that are different from the pictures you've shown of DH lesions. Should she be tested? A: I would be inclined to do a skin biopsy and look for IgA deposits, since she is a first degree relative of a celiac. Q: Is there any relationship between reactive airway disease and CD? A: There is no convincing relationship. Q: Is there any connection between CD and impaired glucose tolerance? A: No, but the association between celiac disease and insulin- dependent diabetes is clear. Q: What is the connection between CD and liver problems? A: We have a few cases where isolated liver problems were initially observed and then CD was diagnosed. If you look at a large number of patients with liver problems, you find a larger percentage with CD than in the general population. .......................................................... : Pathology of Celiac Disease : : --------------------------- : : by Salvatore Auricchio, MD summarized by Jim Lyles : :........................................................: Dr. Auricchio is Professor and Chairman of Pediatrics at the University Frederico II in Naples, Italy. CD manifests itself in the small intestine. A distinct pattern of abnormalities has been observed [comments in braces have been added by Jim Lyles]: * villous atrophy [partial or complete flattening of the finger-like projections in the small intestine] * hyperplasia of the crypts of Lieberkuhn [the crypts under the villi become highly elongated when compared with normal crypts] * increased plasma cell and lymphocyte infiltration of the lamina propria [more lymphocytes under the epithelial or outer layer of the villi. Lymphocytes are the cells that fight off viruses, etc.] * increased intraepithelial lymphocytes [more lymphocytes within the epithelial cells. The epithelial cells form the outer layer of the intestine and allow nutrients to pass through from the intestine into the bloodstream] * abnormalities in the epithelial cells which become flattened, cuboidal, and pseudo- stratified [layered]. It is possible to do an in vitro gliadin challenge. [This is a test of the immune system response to gliadin done in a laboratory setting with tissue samples.] This is done by applying gliadin peptides to normal small intestinal mucosa from treated celiacs. This test is very specific for celiac mucosa and gliadin peptides. If you apply the same gliadin peptides to small intestinal mucosa from non-celiacs, there is no immune system response. Also, if you apply corn prolamin peptides (which are not toxic to celiacs) to mucosa from treated celiacs, there is no immune system response. The in vitro gliadin challenge is suitable for reproducing various immunological features observed in the classic celiac mucosal lesion. This provides a model for studying immuno- mediated disease in which the antigen is well known. This model may help us to understand the pathogenetic mechanism that leads to the disease, which in turn may help in defining new therapies for treating the disease. There were a lot of technical details and discussion which I will not attempt to summarize. ............................................................... : Pitfalls in the Nutritional Management of Celiac Disease : : -------------------------------------------------------- : : by Nancy Patin Falini, MA, RD summarized by Kathy Davis : :.............................................................: Nancy Patin Falini is a consulting dietitian, and is the dietitian advisor for the Greater Philadelphia Celiac Sprue Support Group, a chapter of CSA/USA. Don't use the phrase gluten-free (GF) diet, because the word "diet" implies something temporary that could end. Instead, think and refer to it as a GF meal plan, a behavior change that lasts a lifetime. Nebulous ingredients are one of the big pitfalls in processed foods and pharmaceuticals. By "nebulous" I mean ingredients that might or might not contain gluten. Examples include vegetable protein, modified food starch, vegetable gum, soy sauce, and malt. Incidental ingredients are used in 1% of food processing. One example is mono- and diglycerides which by themselves are fat but in processing may bind with wheat starch. The wheat starch would be considered an incidental ingredient. Another example is brown rice syrup which may be processed with barley enzymes. Some foods can be floured before packaging; an example is potato chips. Cross contamination can occur in food at home or in a restaurant. For example, consider the residue in a deep fat fryer that cooks both breaded foods and french fries. The french fries can be cross contaminated by the residue from the breaded foods. In medications the fillers can be labeled as plain "starch"; this is an ingredient that should be checked. Alcohol can be used in foods and medications. Over-the-counter medications label their ingredients on the package insert. For prescription medications you must contact the manufacturer. One idea is to have your physician give you a sample of any new medication (if available) with the package insert listing the ingredients, so that you can check them out. If you take a medication such as Cipro and find out that it is safe, don't assume it will be again in the future. You need to check it each time it is ordered. If you take vitamin and mineral supplements, be sure they are GF; otherwise you are defeating the purpose of taking them. When you have to be in the hospital you must be very verbal about the need for a GF diet. A clear liquid diet can contain barley in herbal tea, or caramel coloring and vegetable protein in broth. If possible have family members or friends bring you GF food to eat from home. If your hospital stay is preplanned, call the dietary staff and let them know your needs before you are admitted. You must develop skills to abstain from gluten; be a detective, take the time to research ingredients, and be proactive [cringe; I HATE that word-ed.], speak up. Celiacs need support from the medical community, family and friends. If possible, be involved in a support group. A person with CD must have the skills, knowledge, and desire to remain GF. In response to questions from the floor, the following points were made: * Caramel color usually comes from corn. * Anatto color comes from the anatto seed. The color is extracted from the seed using alcohol. * Natural and artificial colors are not a concern. [There is some disagreement on this point; if a grain alcohol is used to extract a natural color, some people feel it will contain a small amount of gluten-ed.] * Intravenous (IV) solutions can contain soy. * When you are in a hospital on a GF diet, check how old the hospital's information is. Some hospitals believe that malt and wheat starch are allowed.

Return to the Table of Contents

Recipe Page -----3----- ********************************************************************** Chocolate Sour Cream Cake 4 oz. unsweetened chocolate 1-1/2 cups GF flour mix** 3/4 cup lowfat sour cream 2 cups sugar 1/4 cup shortening 1-1/4 tsp. baking soda 1 cup water 1 tsp. baking powder 4 eggs, separated 1 tsp. salt 1 tsp. vanilla 1 tsp. xanthan gum Heat the oven to 350 degrees F. Grease and line with waxed paper or parchment the bottoms of two 9 inch round pans. Melt the chocolate. Let cool. In a large bowl, combine the sour cream, shortening, water, egg yolks, vanilla, and melted chocolate. Blend well. Sift dry ingredients three times and add to the liquid mixture. Beat 3 minutes at medium speed. With clean beaters, beat egg whites until stiff but not dry. Fold into batter, mixing gently but thoroughly. Pour into pans. Bake for 30-40 minutes. Test with a toothpick. Cool ten minutes in the pans, and then remove. Carefully remove the waxed paper or parchment. Cool completely, and frost as desired. Store in the refrigerator. This recipe was adapted by Vicki Lyles from the recipe that appears in _Cooking Gluten Free from MGIG_ on page 122. This makes a very moist, fudgy cake. ********************************************************************** Apple Cranberry Crisp 3 lb. red delicious apples, 1 tsp. quick tapioca peeled & diced 1 cup crushed GF cereal 12 oz. whole cranberries 1/4 cup brown sugar 1/3 cup sugar 1/4 cup margarine 2 tsp. cinnamon 1 tsp. cinnamon 1 tsp. allspice 1/4 tsp. nutmeg 1 tbsp. of a GF liqueur 1/4 cup finely chopped nuts 2 tsp. cornstarch Rub a little margarine in an 8 inch square baking dish. Bring apples, cranberries, sugar, and first set of spices to a boil in a heavy saucepan; stir for 5 minutes. Mix liqueur, tapioca, and cornstarch together; stir into fruit mixture. Reduce heat and simmer 2 minutes until thick. Pour the thickened mixture into the baking dish. In a small no-stick fry pan, melt the margarine. Stir in the crushed cereal and second set of spices, stirring until just crumbly. Sprinkle the cereal mixture over the fruit mixture. Top with chopped nuts. Bake at 350 degrees F for 20 minutes. Top with GF frozen vanilla yogurt. This can be doubled and put in an 8 x 13 inch pan. It keeps well and reheats easily. This recipe comes from Carollee Hayward, from the Prodigy on-line computer service. Thanks to Judy Hafner for downloading it and providing it for us. ********************************************************************** Double Chocolate Snack Cake 1-2/3 cups GF flour mix** 1 cup water 1 cup packed light brown sugar 1/3 cup GF vegetable oil 1/4 cup GF cocoa (or applesauce) 1 tsp. baking soda 1 tsp. GF vinegar 1/4 tsp. salt 3/4 tsp. GF vanilla 1 tsp xanthan gum 1/2 cup semi-sweet chocolate morsels Heat oven to 350 degrees F. Grease and flour (using a GF flour) an 8 inch square baking pan. In a small bowl combine the flour, sugar, cocoa, baking soda, salt, and xanthan gum. Add water, vinegar, oil (or applesauce), and vanilla; beat with a spoon or wire whisk until smooth. Pour the batter into the prepared baking pan. Sprinkle the chocolate morsels on top. Bake 35- 40 minutes or until a wooden toothpick inserted in the center comes out clean. Cool in the pan on a wire rack. Makes 6-8 servings. This recipe came from our June '95 picnic. ********************************************************************** ** GF flour mix: 6 parts white rice flour 2 parts potato starch (NOT the same as potato flour) 1 part tapioca starch (also called tapioca flour) ********************************************************************** Tri-County Celiac Sprue Support Group Officials: ------------------------------------------------ Physician Advisor: Thomas Alexander, M.D. Dietitian Advisor: Dorothy Vaughan, R.D. President: Diane Morof Vice President: Mary Guerriero Past President: Kathy Davis Treasurer: Kathy Wagerson Secretary: Denise Parsons Newsletter Editor: Jim Lyles (200-2214@mcimail.com) Contributing Editor: Judy Hafner (gpyp07a@prodigy.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 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 a note to Jim Lyles, at (200-2214@mcimail.com).