<<Disclaimer: Verify this information before applying it to your situation.>> Newsletter Roundup ------------------ compiled by Jim Lyles This section contains articles and excerpts from newsletters produced by other celiac groups. ............................................................... : : : Excerpts from _Derby City Celiac_ : : --------------------------------- : : Fall 1999 Bill Banks, editor in chief : : Greater Louisville Celiac Sprue Support Group : : PO Box 7194 : : Louisville, KY 40257-0194 : :.............................................................: Living with Chronic Illness, Laurie Grimes, Ph.D. --------------------------- Laurie, a child psychologist and parent of a child with celiac disease (CD), spoke at the June 10 meeting about the psycho-social aspects of chronic illness and, specifically, about living with CD. The talk began with a discussion of the stresses of chronic illness, such as asthma, cystic fibrosis, diabetes, and CD, and the psychological issues that typically accompany each stage of such illnesses. At the initial diagnosis stage, among the many emotional hurdles are reorganizing family routines, managing reactions of family and friends, learning to accommodate community outings, and the pervasive sense of loss and grief that may accompany the feelings of having lost the "normal, healthy self." These feelings of grief and sadness often ebb and flow throughout the course of the patient's life as the illness is gotten used to and then the burdens of managing one's health feel burdensome in comparison to the lives of others. Transition periods are often particularly difficult because they entail establishing a new routine in a new environment and. indoctrinating new people to the illness. For children that involves beginning school, going to a sleep-over, and going off to college, and for adults it can be moves, retirement, travel, or any number of new stages of life. The sense of control and feeling of "normalcy" may be disrupted in transition periods which is stressful and may occasion feelings of sadness or irritation at being burdened with this condition. Other life-long social and emotional issues that are present from the point of diagnosis are maintenance factors--the routine necessary to keep your body healthy. Adhering to the routine and complying with the treatment, and coping with social isolation and strain on relationships are some of the many chronic psychological stressors. Of course, the severity of the psychosocial pressures varies by illness and by person. The severity of the illness, prognosis for healthy living, difficulty and hassle level of the treatment, as well as an individual's personal coping style and perception of the illness, level of support, and sense of control have a strong influence on the experience of living with a chronic illness. The talk concluded with a more focused look at the experience of CD in comparison to other chronic illnesses. Psychological issues are pertinent to celiacs for several reasons: (1) Before diagnosis the symptoms frequently include emotional/behavioral problems, often with a referral to a mental health professional. (2) CD often co-occurs with mental health problems. (3) There are some links to depression, autism, ADD, etc. (4) There are coping and adapting issues after diagnosis, as discussed above. Despite involved and difficult restrictions necessary for adherence to a gluten-free (GF) diet, CD can be seen as the "lesser of chronic illnesses". Not only are there no medicines, surgeries, or therapies necessary, but unlike other chronic illnesses for which the diagnosis may signal a gradual decline in health or a chronically fragile health, with the onset of the GF diet, persons with CD can, for the most part, look forward to a healthy and lengthy life. ........................................... : : : Excerpts from _Gluten-Free Friends_ : : ----------------------------------- : : Fall 1999 R. Jean Powell, editor : : Montana Celiac Society : : 1019 So. Bozeman Ave. #3 : : Bozeman, MT 59715 : :.........................................: Q&A from Dr. Fasano ------------------- The following comes from a presentation by Dr. Alessio Fasano in Billings, Montana on June 19, 1999. Dr. Fasano is involved in a study at the University of Maryland which is trying to determine the prevalence of Celiac Disease in the USA. Q: What is the ratio of men to women with Celiac Disease (CD)? A: Of the 1400 we've tested so far, 58% are females. Of those who've tested positive, the ratio is half and half. Q: I have a strong family history of CD, but I can think of no one in my family who has a related auto-immune disorder such as lupus or diabetes. Is that something I still need to be concerned about? A: Not necessarily. It is not a given. Q: Have you noticed a correlation between non-compliance with the gluten-free (GF) diet and autoimmune disorders being more prevalent? A: Yes! Stick with your diet! Q: After you stop eating gluten, how long is it before symptoms subside? A: This is a good question. Our experience is based on how long you've been exposed. For kids it may be just a few days; but if you've been exposed for years and years, it is sometimes 4-6 months. Q: Is there a connection between CD and Multiple Sclerosis? A: There is no clear association. There are some anecdotal reports, but again we're talking about two autoimmune diseases. We can't conclude that there is such a strong association at this stage--the numbers aren't there. Q: About the gluten challenge: my four year-old has been on a GF diet for about a year now, and it is extremely obvious that he gets sick if he eats anything with wheat in it. He has not had a biopsy. A: Again, I think you're in the kind of situation in which you are extremely convinced and committed to the disease. Believe it or not, you are in a very lucky situation, because if you were to do the challenge, as I would strongly recommend, the time needed to do the entire thing would be brief: he would probably react quickly, the antibodies would probably go crazy quickly, and you could then do the biopsy immediately. It's an investment in the future. You have to understand--and this is well demonstrated--your child may react quickly now, but when he is 14 or 15 this is not necessarily going to happen. I don't want to scare anybody, but I want to share with you a sad story. A few months ago a lady came from Philadelphia, 44 years old, with intestinal lymphoma. She, as a child 6 years old, was diagnosed celiac. When she was 10 she was told that she would grow out of it. She exposed herself to gluten and indeed she did not have any relapse of symptoms until she was 42--and her symptom was intestinal lymphoma. She came to me because she has a 6 year old girl whom she wanted screened and indeed the daughter happened to be celiac. You can bet the girl will be on a GF diet for the rest of her life! So--a short time of aggravation now, followed by a biopsy, will be a tremendous investment in the future. Audience member's comment: If you can put your child through the misery in the summer, then get him diagnosed before school starts. That way you will avoid having your child labeled with Attention Deficit Disorder (ADD). Also, with a biopsy diagnosis, doctors will not be so apt to try to convince him when he is 20 that he's "not really" a celiac and encourage him to go off the diet. Dr. Fasano: That's true and has been our experience as well. Q: If I get the biopsy, should I also say that I'm looking into the possibility of lymphoma as well? A: If you're celiac and you've been diagnosed, and put yourself on the GF diet, then your changes of getting lymphoma are about the same as the general population. Q: How old do you want children to be before you do the biopsy? A: I don't want children to have the biopsy unless there's some indication that the antibodies are there, there is a family history, and there are symptoms (due to the environmental exposure to gluten). There is no age limit; we do the endoscopy to neo-nates (newborns) who are having problems. .............................................. : : : Excerpts from _CDF Newsletter_ : : ------------------------------ : : Fall 1999 Sheila Morrison, editor : : Celiac Disease Foundation : : 13251 Ventura Blvd., Suite 1 : : Studio City, CA 91604-1838 : :............................................: Singing the Beignet Blues, by Karen Davis, the Gluten-Free Guru-illa ------------------------- Beignet, n. A fried pastry usually square and dusted with powdered sugar, consumed as a snack with coffee, especially in New Orleans. Those of us on a gluten-free diet for life have undergone, whether we like it or not, a life-changing diagnosis. Bread, the "staff of life" to most with European ancestry, is our figurative and literal poison. Something that is a central part of our lives is about to change in a radical fashion. Something is, and forever will be, missing. The remainder of this article attempts to present a layman's view of the psychological adaptations necessary to successfully live gluten-free forever. This "minor" change in lifestyle can cause one of two major changes in our mental state (attitude). The minority (the born problem-solvers and young children) usually experience relief that the problem has been identified and quantified then move quickly to "okay, I can no longer eat gluten... what can I eat?" These are the people who adapt with little or no grief and get on with the business of life. Young children really haven't experienced the wide world of gluten and don't miss the tastes, the problem-solvers quickly figure out that getting sick "isn't worth it." The rest of us generally experience what the mental health profession refers to as a "grief state". Once we enter the grief state usually immediately after meeting with the dietitian we go through a series of stages in learning to cope with our changed life status. Trying to short-cut this process rarely, if ever, works. Those who try generally get stuck in the first part of the process-denial. The grieving process was broken down by Dr. Elisabeth Kubler-Ross in her classic book _On Death and Dying_<2> as follows: Stage 1: Denial Stage 2: Anger Stage 3: Bargaining Stage 4: Depression Stage 5: Acceptance (These stages can occur in different order, and also can recur.) As applied to our changed life-style most of us react in an analogous fashion--we disagree with the diagnosis, looking for something, anything else, or we believe that the steps necessary for controlling our illness (the diet) don't apply to us. People who get stuck in denial are also the ones who don't get better after diagnosis or have repeated relapses, as they don't follow the diet 100% of the time. The next stage of the process is anger--usually directed at the outside "normal" world. We become angry that we are "different", that we can't eat what everyone else eats. We are also angry because this change was not our choice--that some outside "authority" imposed it upon us. This is the most dangerous stage for most of us, as we are liable to eat things we shouldn't when we get angry. Getting safely through this stage often involves removing all gluten-containing foods from the house and carrying our meals with us wherever we go, so we can continue to eat safely. If extended family members are not cooperative, this step may also involve abstaining from large family functions where food is involved, unless we bring our own. This is also when we generally learn that at least outside our homes (or other safe places), that simple is best. Once we have mostly mastered our anger at this change in our life situation, we pass into the stage of bargaining with ourselves, our family, our doctors...the "just a little bit can't really hurt" phase. Hopefully, we have abstained enough from gluten and recovered enough health in the prior phase that any resumption of gluten intake leads to a swift and unpleasant reaction. Most of us don't try bargaining too long. When we learn that bargaining doesn't work, depression, or the "oh poor me" syndrome, sinks in. We want to hide from the gluten-filled world, and stay where life is safe. We want people to feel sorry for us (our "poor deprived selves"). We can stay depressed as long as we want to, but life is more fun if we don't. Note that prolonged depression, which cannot be shaken, may be organic in nature, and needs to be evaluated promptly and treated by a trained professional (psychiatrist). Many celiacs experience organic depression for two reasons: our bodies do not absorb all the nutrients needed for proper brain chemistry; secondly, many of these nutrients are found in the highest concentrations in precisely those foods which have been omitted from our diets. Once we are able to shake the depression that comes from a changed life status, we move into the final phase of learning to deal with being a celiac: acceptance. Acceptance of our status as a life-long celiac means that we have learned, and now constantly practice, active measures for taking back control of our lives and protecting our health. We call ahead to verify restaurant menus. We learn where to shop for, and prepare, the gluten-free foods most pleasing to our own palates. We have learned how to ask for (order) what we need off of almost any restaurant menu, including fast food, and to avoid the places where we really can't eat safely at all. Many celiacs who accept their disease can entertain by preparing gluten free meals so that "no one knows the difference". We can accept what we have been dealt, leaving behind the beignets, breads, doughnuts, and other gluten-laced foods, and live a long, healthy, happy life. We can fight and deny and remain ill. The choice is ours--which path do you choose? -=-=- -=-=- Product News: Risotto Warning: When dining out, make sure the stock (chicken broth) is made in the restaurant's own kitchen and ask if the risotto is made with only rice products. Some "designer" chefs are now using grains such as barley in their risotto mixture. --from Beth Hillson of the Gluten-Free Pantry. Stash Teas are all gluten-free (GF). "Celiac disease is not uncommon these days and we have made a decision to keep all of our ingredients gluten-free," states Joy Edlund, food chemist. For more information, e-mail <[log in to unmask]>. Eli Lilly: According to James J. McGinty, R.Ph., all their products, including those from their Dista Products division, are GF. Wheat, rye, barley, oats, and their derivatives are not used as dilutents or binders in their products. Further, the alcohol used in their products is derived from synthetic (petroleum-based) sources. Maltodextrins: The USA Food and Drug Administration has defined maltodextrin as "...a white powder or concentrated solution by partial hydrolysis of corn starch or potato starch with safe and suitable acids and enzymes."<3> The food industry usually refers to corn-based products when referring to maltodextrins. But in addition to the legally-defined corn and potato versions, some ingredient manufacturers also produce maltodextrins from other starchy sources, such as rice and tapioca. Nowhere in the article does it mention wheat connected with maltodextrins. Dr. Buford Nichols, USDA/ARS Children's Research Center at Baylor College of Medicine, researches starches. He said "...in the USA Maltodextrin is always from corn." Imported products have no such guarantee--be forewarned. (Aug. 9, 1999) ......................................................... : : : Excerpts from the Washington Area CS Support Group : : -------------------------------------------------- : : newsletter: Late Fall 1999 Becky Campbell, editor : : 1332 R Street, NW : : Washington, DC 20009 : :.......................................................: Product Information: McCormick has some new spice blends and flavor medleys that are gluten-free (GF). The new GF blends are Key West, Monterey Style, and Santa Fe. The new GF medleys are Garlic Herb, Italian Herb, Lemon & Pepper, and Tomato Basil. For more information, call 800-632-5847. Starbuck's Rhumba Frappuccino is NOT GF. All of the other coffee drink items are GF. For more information, call 206-447-1575, ext. 2900 or e-mail <[log in to unmask]>. Cabot Cheese products are all GF. The company representative also assured that there is no possibility of cross-contamination. For more information, call 888-TRY-CABOT (888-879-2226) or visit their website at <http://www.cabotcheese.com>. Neutrogena has confirmed that their new line of cosmetics is GF except for their mascara. For more information, call 800-217- 1136.