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Found 13 results

  1. Celiac.com 09/28/2017 - The Gluten Intolerance Group of North America (GIG) is suing celebrity chef Jamie Oliver for using a logo on his gluten-free recipes that is similar to that of the GIG's Gluten-Free Certification Organization logo. Although there is no disagreement that Mr. Oliver's recipes are indeed gluten-free, a judge and jury may need to decide whether or not he is violating their trademark by using a similar graphic on his recipes. According to the Gluten-Free Certification Organization, its logo is now widely identified as the official gluten-free stamp of approval on gluten-free products. In the lawsuit the GIG claims that Mr. Oliver is purposely using their trademark on his online recipes to make it seem as though they've been certified gluten-free by the Gluten-Free Certification Organization, which is not the case. The GIG also claims that this is misleading to consumers, and using the trademark in this manner could ruin their reputation. The GIG has asked Mr. Oliver to stop using his 'gluten-free' online labels, and will seek monetary damages in court if he does not comply. Source: tmz.com Gluten Intolerance Group of North America v. Jamie Oliver Food Foundation, Inc. et al., case number 2:17-cv-01461, U.S. District Court for the Western District of Washington.
  2. The the connection between iodine and Dermatitis Herpetiformis is briefly described by the following excerpt from a resource guide of the Gluten Intolerance Group of North America: Iodine can trigger eruptions in some people (with dermatitis herpetiformis). However, iodine is a essential nutrient and should not be removed from the diet without a physicians supervision. Iodine does not contain gluten. Iodine can worsen the symptoms of skin lesions in patients with dermatitis herpetiformis. When the deposits of IgA have been cleared from the skin over time by following a gluten free diet, iodine should no longer present any problem for dermatitis herpetiformis patients. As background, for those who are not familiar with Dermatitis Herpetiformis, the following description comes from a resource guide of the Gluten Intolerance Group of North America: Dermatitis herpetiformis (dermatitis herpetiformis) is a chronic disease of the skin marked by groups of watery, itch blisters. The ingestion of gluten (the proteins gliadin and prolamines contained in wheat, rye, oats, and barley) triggers an immune system response that deposits a substance, IgA (immonuglobin A), under the top layer of skin. IgA is present in affected as well as unaffected skin. dermatitis herpetiformis is a hereditary autoimmune disease linked with celiac disease. If you have dermatitis herpetiformis, you always have celiac disease. With dermatitis herpetiformis the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy then those with only celiac disease. Both diseases are permanent and symptoms/ damage will occur after comsuming gluten. When my husband was diagnosed with dermatitis herpetiformis last November, he went to visit a expert in dermatitis herpetiformis, Dr. John J. Zone, at the University of Utah (USA). The written instructions Dr. Zone gave him included the following statement: The mineral iodine is known to make the disease (dermatitis herpetiformis) worse. For this reason, foods and supplements high in iodine should be avoided. Table salt which is not iodized should be used. This can be found in most grocery stores with the other salts. Avoid kelp and other seaweed products, and do not use sea salt. If you take any nutritional supplements, examine them carefully to avoid any iodine containing ingredients. It is not necessary for dermatitis herpetiformis patients to eliminate iodine completely from their diet, merely to avoid foods high in iodine as described above. Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet. More about iodine: Intake of large amounts of inorgana iodide is known to exacerbate symptoms and a few patients have been reported to improve on low iodide diets. However, this is not a mainstay of treatment and need only be considered if patients are consuming excessive iodide in the form of vitamin pills, kelp, or seafood. Likewise, some patients have reported exacerbation with thyroid hormone replacement therapy and thyrotoxicosis. In such cases, excessive thyroid replacement should be avoided and thyrotoxicosis treated appropriately. Dermatitis Herpetiformis, John J. Zone MD, Curr Probl Dermatol, Jan/Feb 1991, p36 Dermatitis Herpetiformis is considered a rare skin disease. The true incidence and prevalence of dermatitis herpetiformis appears to vary in different areas of the world and may vary within the same country. During 1987, 158 cases of documented dermatitis herpetiformis were identified in the state of Utah out of a population of 1.6 million, a prevalence of 9.8 per 100,000. Dermatitis Herpetiformis, John J. Zone MD, Curr Probl Dermatol, Jan/Feb 1991, p15
  3. Celiac.com 02/27/2006 - Gluten Intolerance Group (GIG) applauds McDonald’s for providing proof that their French fries are safe for persons with celiac disease and gluten intolerances, states Cynthia Kupper, RD, Executive Director of GIG. Kupper, who has worked with large corporate chain restaurants for many years to provide gluten-free menu options, states McDonald’s took the best action possible by having the fries tested by one of the leading independent laboratories in food allergens. McDonald’s has provided the reassurance those persons with celiac disease need, to feel confident they can eat the fries without getting sick. Outback Steak House was the first large restaurant chain Kupper worked with to develop gluten-free menus. “We definitely made some new friends!” stated Thomas C. Kempsey, Director of Culinary for Cheeseburger in Paradise, speaking of the gluten-free menu Kupper helped the chain launch in February. Cameron Mitchell’s Fish Market, Bone Fish Grill, Carrabba’s, Bugaboo Creek, and many others have worked with GIG to develop gluten-free menus. The program has been very successful for restaurants involved with GIG’s outreach project, states Kupper. The patrons are happy and the restaurants see a growing number of loyal customers. GIG promotes safe and healthy dining through education of restaurants and consumers. Many restaurants have developed gluten-free menu options. Some individual restaurants are part of a program GIG will soon manage called the Gluten-Free Restaurant Awareness Program (www.glutenfreerestaurants.org). Both this program and GIG’s corporate program have strict guidelines for inclusion. Many restaurants have the potential to meet the needs of persons with food sensitivities, however not all are willing to take the extra steps necessary to do so. Many people with celiac disease are afraid to eat away from home for fear of getting sick according to research. To know that restaurants offer gluten-free choices, verified by trusted sources is a big deal for these people. For people who travel, places like McDonalds and Outback become their safety nets and they will not eat anywhere else, states Kupper. Parents want their children to have options like other kids, so McDonald’s is a perfect fast food choice. Not all fast food restaurants use dedicated fryers and some use fries that are treated with wheat flour – an absolute ‘must avoid’ for celiacs. Unlike other acute allergies, such as peanut allergies, celiac disease is a chronic condition that can cause damage to the intestines, malabsorption and malnutrition by eating gluten (proteins found in wheat, rye, barley and hybrids of these grains). Celiac disease is a life-long disease that can be diagnosed at any age. The only treatment for the disease is the strict avoidance of gluten. Celiac disease affects nearly 3 million people in the US and 1:250 people worldwide, yet it is the most misdiagnosed common disorder today. The Gluten Intolerance Group, based in Seattle WA, is a national nonprofit organization providing support and education to persons with gluten intolerances in order to live healthy lives. GIG is the leading national organization for gluten intolerances with a dietitian on staff daily to work with consumers. Gluten Intolerance Group (GIG) works with restaurants to offer gluten-free dining options for persons with celiac disease.
  4. Celiac.com 03/07/2016 - Even though doctors know a lot more about celiac disease than they did just a few years ago, and even though they are learning more all the time, there are still very few detailed clinical descriptions of large groups of celiac patients. Recently, a team of researchers reviewed a large Dutch cohort of celiac patients to create an overview that focused on symptom presentation, co-occurrence of immune mediated diseases and malignancies. The research team included M Spijkerman, IL Tan, JJ Kolkman, S Withoff, C Wijmenga, MC Visschedijk, and RK Weersma. They are variously associated with the Department of Gastroenterology and Hepatology, University of Groningen and University Medical Center Groningen, Groningen; the Department of Genetics, University of Groningen and University Medical Center Groningen, Groningen, The Netherlands, and with the Department of Gastroenterology and Hepatology, Medisch Spectrum Twente, Enschede, The Netherlands. To create their overview, the team performed a retrospective study in a Dutch university and a non-university medical hospital that included only patients with biopsy proven (≥Marsh type 2 classification) celiac disease. The team selected 412 patients from 9,468 small-bowel biopsy pathology reports and financial codes. About a third of the group showed classical celiac symptoms, including diarrhea (37.4%), fatigue (35.0%), weight loss (31.6%), abdominal pain (33.3%). Around 10% showed atypical symptoms, including constipation (10.4%) and reflux (12.4%), while nearly 12% were diagnosed without any reported symptoms. About one in four patients also had immune-mediated diseases, most commonly type 1 diabetes mellitus (4.9%), microscopic colitis (4.9%), and immune mediated-thyroid disease (4.1%). Celiac patients who also had immune-mediated diseases were significantly older at the time of diagnosis, compared to those without (P=0.002). A total of 53 patients (12.9%) had malignancies, eight of whom suffered from Enteropathy Associated T-cell Lymphomas. This is the first Dutch study to describe a group of celiac patients in such detail. The study highlights the wide range of clinical variables in celiac disease, as well as the importance of screening for celiac patients for concomitant diseases. Source: Dig Liver Dis. 2016 Jan 18. pii: S1590-8658(15)30028-1. doi: 10.1016/j.dld.2016.01.006. [Epub ahead of print]
  5. Celiac.com 09/01/2005 - The Gluten Intolerance Group® is pleased to announce our gluten-free food certification program, the Gluten Free Certification Organization (GFCO), the first program of its kind in the world! This new independent food processing inspection program will verify that food products meet the highest standards for gluten-free ingredients and a safe processing environment. Food products meeting these high standards will receive our gluten-free certification mark, allowing gluten-free consumers to easily identify foods that are free of gluten and possible cross-contamination from gluten. Key elements of the GFCO process include: Ingredients review, down to the original supplier Onsite inspections by experienced, trained independent (third party) Field Inspection Agents Product and ingredient testing using scientifically AOAC approved testing methods GFCO certification mark located on product packages for easy identification Gluten-free you can easily see Products labeled with the gluten-free certification mark allow consumers to easily identify products that have been independently verified to meet the highest standards for gluten-free ingredients and safe processing environment. First major food companies to adopt GFCO supervision and labeling Enjoy Life Foods and PureFit Nutrition Bar are the first food manufacturers to join the GFCO supervision program. These pioneering companies will display the gluten-free certification mark on their food products in the near future. GFCO maintains a system of independent verification through plant visits to assure that there have been no changes that might compromise its gluten-free status. GFCO certification uses the highest standards for gluten-free ingredients and safe processing environment, and cannot be altered or compromised. The GFCO certification standards exceed the requirements of current government laws and regulations. The voluntary participation of companies in this program will ensure public confidence in the gluten-free status of their products. The GFCO was developed in cooperation with the Food Services, Inc., a subsidiary of the Orthodox Union (the "OU"), the worlds largest and oldest kosher certification agency. The OUs nearly 500 field representatives, proficient in modern food production techniques and chemical and biological processes, will conduct plant inspections and product reviews for the GFCO. Like the Good Housekeeping Seal of Approval, the logo, one of the worlds best-known trademarks, instills confidence in the purchaser that the product has passed inspection and meets high quality standards. For more information visit: http://www.oukosher.org. The Gluten-Free Certification Organizations (GFCO) mission is to provide an independent service to supervise gluten-free food production according to a consistent, defined, science-based standard, that is confirmed by field inspections, in order to achieve heightened consumer confidence and safety. GFCO is governed by an independent volunteer board that includes physicians, food scientists and consumers. For more information visit: http://www.gfco.org, or call 206-246-6652. The Gluten Intolerance Group® (GIG)s mission is to increase awareness by providing accurate, up-to-date information, education and support for those with gluten intolerance, celiac disease/dermatitis herpetiformis, their families, health care professionals and the general public. GIGs volunteers, staff, and Board are knowledgeable, and our materials and resources are credible. GIGs Medical Advisory Board approves all education materials. For more information visit: http://www.gluten.net.
  6. This article originally appeared in the Winter 2014 issue of Journal of Gluten Sensitivity. Celiac.com 04/30/2014 - Dr. Catassi and colleagues reported, in the September of 2013 issue of Nutrients, that during the previous 21 months for every ten reports about celiac disease, there was one report of non-celiac gluten sensitivity (1). They plotted the publication ratio over the last 60+ years, showing that there has been a steady increase of reports on non-celiac gluten sensitivity in the medical literature that has grown proportionally faster than the number of reports about celiac disease, and most of us are aware of the rapid growth made by the celiac literature during that same period. By implication, we may reasonably assume that this reflects a growing interest among physicians and other health care workers. Catassi and colleagues mention the first meeting of an expert panel in London during 2011, and report on discussions from the December, 2012 meeting of experts in Munich, addressing a wide range of illnesses thought to have some connection with gluten ingestion (1, 2). An approximately concurrent report by Mooney et al ( including Sanders, one of the above-mentioned experts) (3) attempts to clarify and extend some of the information from the Catassi et al report, as well as contradicting it on the issue of IgG anti-gliadin antibodies as a potential biomarker for non-celiac gluten sensitivity (1). This growing trend of interest in non-celiac gluten sensitivity, along with the publications specifically cited here, offer enormous affirmation of the Journal of Gluten Sensitivity and its editorial staff, and we are loathe to criticize it in any way. Oats However, in the same report, Catassi and colleagues repeatedly decry the “lack of biomarkers” for non-celiac gluten sensitivity (1). In essence, they are saying that there is no known laboratory test that will reliably identify this form of gluten sensitivity. Further, while they admit that they have “poor knowledge of the pathophysiology” of non-celiac gluten sensitivity, they seem to assume that oats may be safely eaten by individuals afflicted by this sensitivity. They appear to reflexively exclude oats from any further investigation, as a possible factor in non-celiac gluten sensitivity. Such assumptions appear to be bleeding over into their perceptions of non-celiac gluten sensitivity from their work with celiac disease. The IBS Connection Catassi et al also cite one study that reports a rate of 28% of non-celiac gluten sensitivity among IBS patients, and a larger study that reports a rate of 30% of IBS patients who have wheat sensitivity, either with or without other food sensitivities. This same group reports a prevalence of IBS in northern Europe of between 16% and 25% of the population (1). If we take their most conservative numbers, estimating that IBS afflicts only 16% of the population, and that 28% of that group has non-celiac gluten sensitivity, then about 4.48% of northern Europeans should have non-celiac gluten sensitivity. Catassi et al say that the rate could well be above 1% (1). Some might suggest that this is a gross understatement that distorts the data rather than clarifying it. This, too, may reflect a preoccupation with lessons learned from celiac disease, rather than a de novo view of gluten sensitivity. They cite yet another study of a subset of IBS patients in which diarrhea was the predominant symptom, particularly among patients with genetic HLA DQ2 and DQ8 markers, which are associated with celiac disease. These IBS patients showed compromised bowel barrier function when consuming gluten, presumably as a function of barrier permeability. They go on to assert that the gluten free diet offers some measure of symptom relief even to those patients whose IBS may be partly or wholly driven by low-fermentable, poorly-absorbed, short-chain carbohydrates, as gluten proteins may be included in this list of potentially problematic foods. Psychiatric Connections Catassi and colleagues also explore schizophrenia and autism where sub-groups of non-celiac gluten sensitivity have been identified. They report the findings of two studies of schizophrenic patients wherein no benefits were seen after gluten avoidance over the study periods of either 10 days (4) or 5 weeks of treating 8 chronic schizophrenic patients (5). Catassi et al also mention the mildly positive results from a study of 14 weeks’ duration (6). However, beyond citing one paper authored by Dr. Curtis Dohan, identified as the earliest suggestion of a connection between gluten and schizophrenia, they do not mention the recommendations of Dohan and his colleagues, who called for a minimum study duration of at least six months and as much as a year on a gluten free, dairy free diet before the potential benefits of this diet can be observed in schizophrenic patients. They also recommended treating newly diagnosed and newly relapsed schizophrenic patients with this diet as they had observed little positive response among the chronic schizophrenic subjects they studied (8, 9, 10, 11). Further, Catassi et al completely fail to acknowledge the work by Zioudrou and colleagues (12) that identifies a possible source of urinary peptides seen both in many schizophrenics (13, 14) and many patients with autism (15). These peptides have, since their discovery, been recognized as psychoactive (12). These insights are particularly important in these realms of mental illness and abnormal development, as they offer insights that may someday offer vastly more effective treatments than are currently available. Again, celiac disease may be coloring the lens through which these experts are looking at non-celiac gluten sensitivity. Catassi and his colleagues go on to acknowledge that IgG class antibodies against gliadin, a sub-group of gluten proteins, as markers for increased intestinal permeability (1) but they fail to acknowledge this protein group as the missing “biomarker” of gluten sensitivity. They say: “Non-celiac gluten sensitivity is currently a diagnosis of exclusion with the only positive diagnostic criterion being the clinical response to gluten withdrawal. Patients should have negative celiac serology, normal duodenal histology, and negative IgE-based tests” (1). IgG against gliadin offers a biomarker for 19.8% tp 23.5% of the population. Yet serology is the most common approach to measuring IgG anti-gliadin, and others have made this connection, identifying IgG class anti-gliadin antibodies as “ a measure of the immune response to gliadin” (7). (Gliadin is a sub-group of gluten proteins.) If someone is mounting an immune response against gliadin, it is reasonable to say that they are gluten sensitive. So why would Catassi and colleagues back away from the data suggesting that non-celiac gluten sensitivity may afflict from 4.48% to as many as 7.5% of the northern European population, based only on those with diagnosed IBS? Further, 12% of healthy blood donors in the United Kingdom have also been reported to show elevated levels of anti-gliadin antibodies (16). Taken together, these suggest a rate of non-celiac gluten sensitivity, as identified by IgG class antibodies against gliadin among northern Europeans, of between 16.8% and 19.5% of the general population. Dr. Sapone and her group have identified and reported on a group of non-celiac gluten sensitive patients (21) who present with what Dr. Sapone and her group have elsewhere characterized as a function of the innate immune system and comprise between 6% and 7% of the general population (22). Only about half of these subjects show anti-gliadin antibodies but since they are not healthy blood donors or IBS patients, we may reasonably predict that between 22.8% and 26.5% of the population has non-celiac gluten sensitivity. And there are likely a lot more cases than are suggested by those numbers. For instance, about 7% of patients with multiple sclerosis showed IgG class antibodies against gliadin (17), while more than 20% of patients with Crohn’s disease, and 6.5% of patients with rheumatoid arthritis also showed elevated IgG antibodies against gliadin (18), and Samaroo et al found the same antibodies elevated in the sera of 5.6% of the schizophrenic patients they studied (19). And Hadjivassiliou’s group states “IgG antigliadin antibodies have a high sensitivity not only for patients with coeliac disease but also for those with minimal or no bowel damage where the principal target organ is the cerebellum or peripheral nervous system” (20). Cancer Perhaps the most distressing part of the Catassi report is where it says “No major complication of NCGS has so far been described; especially autoimmune comorbidity , as observed in celiac disease, has not been reported so far.” In 2007, Anderson et al published a report in which people with non-celiac gluten sensitivity experienced: “ ..... the incidence of malignant neoplasms in patients with celiac disease (positive EMA test) was similar to that of the Northern Ireland population. However, mortality from malignant neoplasms, NHL [non-Hodgkin’s lymphoma], and digestive system disorders was significantly increased in patients who were gluten sensitive with a negative EMA test” (7). This same report states that it may be the first investigation of malignancy and mortality among non-celiac gluten sensitive patients (7) and they have found that cancer and increased mortality is higher among those who are gluten sensitive than among those with celiac disease. Why Not IgG Anti-gliadin as Biomarkers? You may, like me, be wondering why the Catassi-led group retreated from the use of IgG antibodies against gliadin as a bio-marker for gluten sensitivity, when the consequences of ignoring it are made obvious by the Anderson et al study mentioned in the previous paragraph, showing increased mortality rates in this group. This result may be due to physicians’ failure to recommend a gluten free diet, reflecting their skepticism regarding this marker. The Catassi et al skepticism is especially puzzling when at least one of their own members (Sanders) had submitted a report for publication at about the same time, in which he and his colleagues assert a prevalence of non-celiac gluten sensitivity of 12%, among healthy blood donors, based on IgG anti-gliadin antibodies (3). We are also left wondering why these experts would ignore the recommendations and insights embodied in the large and earliest body of research connecting schizophrenia and gluten, authored by Curtis Dohan and his colleagues (8-14) while Catassi et al seem to give credence to the negative results reported by investigations lasting only ten days or five weeks? I think that Catassi et al have answered this question, but before we discuss that, I’d like to point out that elite athletes have reported improved performance on a gluten free diet (23, 24). They were already performing at the very pinnacle of their sports, yet their experimenting with the gluten-free (and in one case, also a paleo-diet) led to enhanced performance. That really is quite amazing. And what about those with IgG AGA who have neurological or other autoimmune diseases? Also, the girl that Kim and I wrote about in the last issue of this Journal is a perfect example of a patient with autoimmune diabetes, where celiac disease was ruled out, so she was told that she would have to inject insulin for the rest of her life. Yet all she needed was a gluten free diet and very insightful parents who were willing to press physicians to expand their thinking a little. I must say that I am very pleased with Catassi et al’s stated recognition of extra-intestinal manifestations of non-celiac gluten sensitivity. However, their approach is to call for further characterizing the various groups that respond differently to gluten, based on grouping by specific illnesses. This may miss the larger picture. Catassi et al acknowledge that “The vast majority of celiac experts initially reacted with a great deal of skepticism to the concept of NCGS existence and the fact that it was a separate entity from celiac disease” (1). They go on to suggest that we are about at the same place that we were forty years ago with celiac disease. Perhaps. As it stands, we have celiac disease and we have non-specific anti-gliadin antibodies that signal the lion’s share of cases of non-celiac gluten sensitivity, an increased risk for autoimmunity, a majority of a wide range of neurological diseases that are also more frequent among those with celiac disease, we also have many children with ADHD who recover on a gluten-free diet alone, we have a very large majority of children with learning disabilities who recover on a strict gluten-free diet, we have people who lose weight on a gluten-free diet, we have people who just think that they feel better on a gluten-free diet, and we have elite athletes who perform better on a gluten free diet. We also have cases of non-celiac gluten sensitivity as characterized by Dr. Sapone et al, where the innate immune system is involved, and we only have anti-gliadin antibodies associated with about half of those individuals. When we see all these fractured pieces scattered about the landscape of gluten induced illness, it is highly likely that we are missing the larger vista that incorporates all of them. But we would have to let go of some sacred cows to see that larger picture. The first sacred cow we should abandon is the idea of celiac disease as a distinct and most important disease entity, and begin to think of gluten induced disease, or to use Rodney Ford’s term, “gluten syndrome”. I think it is great that non-celiac gluten sensitivity is getting more recognition, but the current lens through which medical researchers view celiac disease and non-celiac gluten sensitivity may be clouded by their reductionist paradigm. The problem, as I see it, is that celiac disease has long been mischaracterized. When Dr. Dicke showed that the gluten free diet reversed celiac disease, few believed him. He was laughed out of a world conference in New York City and vowed never to return to the USA. When he and his colleagues searched for a ‘scientific’ way to validate the diet as an effective treatment for celiac disease, they found intestinal villous atrophy, so the medical understanding of gluten induced illness has evolved, primarily, as an intestinal ailment characterized by villous atrophy. I think that Dr. Rodney Ford’s conception of celiac disease as a sub-group of intestinal and extra-intestinal ailments that first derive from gluten’s assault on neurological tissues (25) is better rooted in the facts, and much more likely to prove true. Ford’s perspective may well provide a better tool for understanding gluten’s impact on human health - although it impugns major parts of more than seventy years of medical and scientific research into celiac disease. It may even suggest that we were looking in the wrong direction for much of the time. Ford postulates that gluten’s first insult is to neurological tissues. Those who are susceptible to celiac disease may go on to develop intestinal damage as a sequel to the neurological injury. Those who are not susceptible to celiac disease may go on to develop any of a number of gluten-related ailments, depending on their unique genetic makeup, experiences, and exposures (25). Understandably, Rodney’s conception may be unpopular among some medical practitioners and researchers - but it sure fits the facts better than anything else I’ve seen. Sources: Catassi C, Bai JC, Bonaz B, Bouma G, Calabrò A, Carroccio A, Castillejo G, Ciacci C, Cristofori F, Dolinsek J, Francavilla R, Elli L, Green P, Holtmeier W, Koehler P, Koletzko S, Meinhold C, Sanders D, Schumann M, Schuppan D, Ullrich R, Vécsei A, Volta U, Zevallos V, Sapone A, Fasano A. Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders. Nutrients 2013, 5, 3839-3853. http://www.drschaer-institute.com/smartedit/documents/yourlife/dsif_03_2011_uk_internet.pdf Mooney PD, Aziz I, Sanders DS. Non-celiac gluten sensitivity: clinical relevance and recommendations for future research. Neurogastroenterol Motil. 2013 Nov;25(11):864-71. doi: 10.1111/nmo.12216. Epub 2013 Aug 12. Storms LH, Clopton JM, Wright C. Effects of gluten on schizophrenics. Arch Gen Psychiatry. 1982 Mar;39(3):323-7. Potkin SG, Weinberger D, Kleinman J, Nasrallah H, Luchins D, Bigelow L, Linnoila M, Fischer SH, Bjornsson TD, Carman J, Gillin JC, Wyatt RJ. Wheat gluten challenge in schizophrenic patients. Am J Psychiatry. 1981 Sep;138(9):1208-11. Vlissides DN, Venulet A, Jenner FA.A double-blind gluten-free/gluten-load controlled trial in a secure ward population.Br J Psychiatry. 1986 Apr;148:447-52. Anderson LA, McMillan SA, Watson RG, Monaghan P, Gavin AT, Fox C, Murray LJ. Malignancy and mortality in a population-based cohort of patients with coeliac disease or “gluten sensitivity”. World J Gastroenterol. 2007 Jan 7;13(1):146-51. Dohan “Cereals and schizophrenia: data and hypothesis” Acta Psychiat Scand 1966; 42: 125-152 Dohan et. al. “Relapsed Schizophrenics: More Rapid Improvement on a Milk-and Cereal-free Diet” Brit J Psychiat 1969; 115: 595-596 Dohan et. al. “Is Schizophrenia Rare if Grain is Rare?” Biol Psychiat 1984; 19(3): 385-399 Dohan “Is celiac disease a clue to pathogenesis of schizophrenia?” Mental Hyg 1969; 53: 525-529 Zioudrou et. al. “Opioid peptides derived from food proteins. The exorphins” J Biol Chem 1979; 254:2446-2449 Dohan FC. Genetic hypothesis of idiopathic schizophrenia: its exorphin connection. Schizophr Bull. 1988;14(4):489-94. Severance EG, Alaedini A, Yang S, Halling M, Gressitt KL, Stallings CR, Origoni AE, Vaughan C, Khushalani S, Leweke FM, Dickerson FB, Yolken RH. Gastrointestinal inflammation and associated immune activation in schizophrenia. Schizophr Res. 2012 Jun;138(1):48-53. Reichelt KL, Tveiten D, Knivsberg AM, Brønstad G.Peptides’ role in autism with emphasis on exorphins.Microb Ecol Health Dis. 2012 Aug 24;23. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A.Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71. Shor DB, Barzilai O, Ram M, Izhaky D, Porat-Katz BS, Chapman J, Blank M, Anaya JM, Shoenfeld Y. Gluten sensitivity in multiple sclerosis: experimental myth or clinical truth? Ann N Y Acad Sci. 2009 Sep;1173:343-9. doi: 10.1111/j.1749-6632.2009.04620.x. Shor DB, Orbach H, Boaz M, Altman A, Anaya JM, Bizzaro N, Tincani A, Cervera R, Espinosa G, Stojanovich L, Rozman B, Bombardieri S, Vita SD, Damoiseaux J, Villalta D, Tonutti E, Tozzoli R, Barzilai O, Ram M, Blank M, Agmon-Levin N, Shoenfeld Y. Gastrointestinal-associated autoantibodies in different autoimmune diseases. Am J Clin Exp Immunol. 2012 May 25;1(1):49-55. Print 2012. Samaroo D, Dickerson F, Kasarda DD, Green PH, Briani C, Yolken RH, Alaedini A. Novel immune response to gluten in individuals with schizophrenia. Schizophr Res. 2010 May;118(1-3):248-55. doi: 10.1016/j.schres.2009.08.009. Epub 2009 Sep 11. Hadjivassiliou M, Grünewald RA, Davies-Jones G A B. Gluten sensitivity: a many headed hydra. Heightened responsiveness to gluten is not confined to the gut. BMJ. 1999 June 26; 318(7200): 1710–1711. Sapone A, Lammers KM, Casolaro V, Cammarota M, Giuliano MT, De Rosa M, Stefanile R, Mazzarella G, Tolone C, Russo MI, Esposito P, Ferraraccio F, Cartenì M, Riegler G, de Magistris L, Fasano A. Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity. BMC Med. 2011 Mar 9;9:23. Sapone A, Lammers K M, Mazzarella G, Mikhailenko I, Cartenì M, Casolaro V, Fasano A. Differential Mucosal IL-17 Expression in Two Gliadin-Induced Disorders: Gluten Sensitivity and the Autoimmune Enteropathy Celiac Disease. Int Arch Allergy Immunol. 2010 April; 152(1): 75–80. Published online 2009 November 24. https://www.celiac.com/articles/23375/1/New-Djokovic-Book-Promotes-Gluten-free-Diet/Page1.html http://www.examiner.com/article/miami-heat-guard-ray-allen-lost-10-lbs-on-gluten-free-paleo-diet Ford RPK. The gluten syndrome: a neurological disease. Medical Hypotheses. 2009:73, 438-440
  7. Danna Korn founded R.O.C.K. in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn. Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet. Raising Our Celiac Kids is a support group for parents, families and friends of kids with celiac disease or gluten intolerance. We welcome families of autistic kids involved in a gluten-free/casein-free dietary intervention program. We concentrate on dealing with the unique challenges that we have, including: Finding "fun" gluten-free treats for kids Menu ideas for school lunches, quick dinners, and sports snacks Helping the kids to take responsibility for reading labels, cooking and planning/preparing food How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere Halloween, Easter, and other special days - how do we include our kids safely? Educating day-care providers and teachers - without burdening them Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids Ensuring our kids won't cheat, and what to do WHEN they do Sending kids away to camp, friends' houses, and other times when we're not around to help The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more) What do R.O.C.K. chapters do? R.O.C.K. chapters have R.O.C.K. parties! How often you meet will be up to you and your chapter members, but we suggest meeting every two months to start; you can judge from that point whether you'd like to meet more or less often. We'd like to eventually have a chat room, where local chapters can talk to each other or with other chapter members. (In the meantime, people can chat at http://groups.yahoo.com/group/CeliacKids). What goes on at a R.O.C.K. party? R.O.C.K. parties are for the kids and the adults. The kids enjoy gluten-free food and play, while the parents exchange new-product information, questions and concerns, and anything that they feel is pertinent. You may invite speakers (child psychologists, pediatricians, pediatric gastroenterologists, dietitians), and even provide entertainment (clowns, face painters, toys) for the kids. Remember your community centers - they often have teenagers who will entertain the kids - for free! Remember, you may have just a few families at first, but "build it and they will come" - keep it in mind! Should I start a R.O.C.K. chapter or do something on my own? I don't personally profit from any R.O.C.K. activities, so it doesn't benefit me either way. My vision for R.O.C.K. is to provide accurate, supportive information to families of gluten-free kids to make their lives easier and their kids' lives more enjoyable. The more cohesive we are, the more credible we are to new members, vendors, and the gluten-free community as a whole. If you decide to pursue a group on your own, I sincerely wish you the best of luck and hope you'll ask me for help in setting up your group if you need it. If there isn't a R.O.C.K. chapter in your area yet and you're interested in starting one, please contact Danna Korn at danna@dannakorn.com. R.O.C.K. Chapters in the United States Alabama Support Group - Mobile Contact: Marilyn Taylor ROCK’n Mobile, Alabama Tel: (251) 633-3528 E-mail: Taylor6211@bellsouth.net Slocomb - Support Group Contact: Nichole Alexander E-mail: mamma_hen3@hotmail.com Tel: (334) 886-7150 Alaska Chugiak - Support Group Raising Our Celiac Kids (R.O.C.K.) - ROCK'n Alaska Contact: Debbie Saddler Chugiak, AK 99567 Tel: (907) 688-6879 E-mail: alaskadebbie@gmail.com Arizona Gilbert - Support Group Raising Our Celiac Kids (R.O.C.K.) - Gilbert Chapter Contact: Deanna Frazee Gilbert, AZ Tel: (480) 641-8821 E-mail: deannafrazee@hotmail.com Phoenix - Support Group Greater Phoenix R.O.C.K. Contact: Lisa Potts Email: phoenixceliackids@gmail.com FB Page: facebook.com/PHX.ROCK Phone: (858) 442-5956 E-mail: lisa.potts4911@gmail.com Internet: www.phoenixrock.org Tucson - Support Group Raising Our Celiac Kids (R.O.C.K.) - Tucson Chapter Contact: Liz Attanasio Tel: (520) 877-9181 Tucson - ROCK'n Tucson Contact: Shelli Hanks Tucson, AZ 85750 Email: TucsonROCK@comcast.net Tel: (520) 577-0774 Arkansas Fayetteville, AR Melanie Faught Fayetteville, AR 72704 Tel: (479) 582-9232 E-mail: melaniefaught@cox.net California Conejo Valley - Support Group ROCK'n Conejo Valley Contact: Melissa Riches Westlake Village, CA 91361 Tel: (818) 706-0197 E-mail: melissa.riches@sbcglobal.net Danville - Support Group Contact: Ann Reigelman Raising Our Celiac Kids (R.O.C.K.) - Danville Chapter Danville, CA E-mail: areigelman@yahoo.com Lake Balboa - Support Group Contact: Melissa Gray Raising Our Celiac Kids (R.O.C.K.) - Lake Balboa Chapter Tel: (818) 510-0534 E-mail: Melissagray808@gmail.com Los Angeles - Support Group Contact 1: Amy Harley Tel: (818) 249-2432 E-mail: harleyhome@earthlink.net Contact 2: Cheryl Cohen Tel: (818) 784-4516 E-mail: cohencheryl@yahoo.com Moreno Valley - Support Group Contact: Kellee Shearer Raising Our Celiac Kids (R.O.C.K.) - Moreno Valley Chapter 10034 Snipe Circle Moreno Valley, CA 92557 Tel: (951) 242-8448 E-mail: Treshearer@aol.com Orange County - Support Group Contacts: Randi Leinen Raising Our Celiac Kids (R.O.C.K.) - Orange County Chapter E-mail: RMLeinen@aol.com ROCK’n Orange County, CA Contact: Drew Grant Tel: (949) 257-6349 E-mail: orangecountyrock@gmail.com Palo Alto - Support Group Contact: Kelly Velez or Debbie Duncan Bay Area ROCK E-mail: kellyvelez@comcast.net Tel: (650) 303-8409 E-mail: debbie@debbieduncan.com Tel: (650) 494-6959 San Diego - Support Group Raising Our Celiac Kids (R.O.C.K.) - San Diego Chapter Contact: Brenda McDowell E-mail: sdrockchapter@gmail.com San Francisco - Support Group Contact: Lisa Palme Raising Our Celiac Kids (R.O.C.K.) - San Francisco Chapter E-mail: palmer@smccd.net Sebastopol - Support Group ROCK North Bay Chapter Contact: Jennifer Iscol Sebastopol, CA 95472 Tel: (707) 824-5830 E-mail: iscol@aol.com Visalia (Central) - Support Group Contact: Shannon Williams Tel: (559) 741-1671 Visalia, CA Colorado Peyton - Support Group ROCK’n Peyton, CO Crystal Brauer Tel: (719) 494-8590 E-mail: Brauer.family@yahoo.com Connecticut Raising Our Celiac Kids (R.O.C.K) Fairfield County CT Contact: Karen Loscalzo/ Monika Lazaro/ Carolyn Caney E-mail: rockfairfieldcounty@gmail.com Internet: www.ROCKFairfieldCounty.com Simsbury - Support Group Raising Our Celiac Kids - R.O.C.K. - Simsbury Chapter Contact: Mark & Tracy Saperstein Tel: (860) 651-4857 E-mail: mtbahs@comcast.net Waterford - Support Group Raising Our Celiac Kids - R.O.C.K. - Waterford Chapter Contact: Donna Kensel Waterford, CT E-mail: CtCeliacKids@aol.com District of Columbia (Washington D.C.) District of Columbia - Support Group Contact: Linda Hickman Northern VA/Washington DC R.O.C.K. Tel: (410) 290-5224 E-mail: hickman68@verizon.net Florida Apopka - Support Group Contact: Deborah Pfeifle Raising Our Celiac Kids (R.O.C.K.) - Apopka Chapter Apopka, FL 32712 Tel: (407) 880-6104 E-mail: dpfeifle@earthlink.net Coral Springs/Palm Beach - Support Group Contacts: Janna Faulhaber and Stacey Galper Raising Our Celiac Kids (R.O.C.K.) - Coral Springs/Palm Beach Chapter Tel: (954) 255-7855 E-mail: Staceynagel@paxson.com Odessa (Tampa) - Support Group Contact: Terri Willingham Raising Our Celiac Kids (R.O.C.K.) - Odessa Chapter Orlando - ROCK'n Celebration - Support Group Contact: Rose Parvaz Celebration, FL 34747 E-mail: rose.parvaz@celebration.fl.us Palm Beach gardens - Support Group ROCK'n Palm Beach Gardens Contact: Kimberly Wade Palm Beach Gardens, FL 33418 E-mail: tkcrw@comcast.net Tel: (561) 625-9005 Tampa - Support Group Contact: Melissa Ransdell Raising Our Celiac Kids (R.O.C.K.) - Tampa Chapter 14521 Nettle Creek Rd. Tampa, FL 33624 Tel: (813) 265-8105 Georgia Atlanta - Support Group Contact: Jeff Lewis, M.D. Children's Center for Digestive Health Care Raising Our Celiac Kids (R.O.C.K.) - Atlanta Chapter E-mail: jlewis@ccdhc.org Illinois Chicago - Support Group ROCK'n Chicago Contact: Alexandra Vavouliotis Tel: (847)-962-7244 E-mail: alexvav24@mac.com Dekalb - Support Group Contact: Audrey O'Sullivan Raising Our Celiac Kids (R.O.C.K.) - Stillman Valley Chapter Dekalb, IL Tel: (815) 756-2606 E-mail: Audrey08@aol.com ROCKn DuPage & Cook County Aleksandra de Leon -DuPage County E-mail: aleksandra.deleon@gmail.com Tel: 630-745-7429 Ilene Harris- Cook County E-mail: isf27@yahoo.com Tel: 847-222-9950 Moline - Support Group Contact: Lesley Lamphier ROCK'n Illinois (Moline) Moline, IL 61265 Tel: (309) 736-1507 E-mail: celiackids@mchsi.com Springfield - Support Group Land of Lincoln Celiac Support Group Contact: Joyce Hall Raising Our Celiac Kids (R.O.C.K.) - Springfield Chapter Springfield, IL Washington - Support Group Heart of Illinois Celiac Kids Contact: Samantha Young E-mail: info@hoiceliackids.com Indiana Henryville - Support Group Contact: Kristie Williams ROCK'n Indiana (Henryville) Henryville, IN 47126 Tel: (812) 294-1179 E-mail: kristiewilliamsrn@hotmail.com Indianapolis - Support Group Contact: Kelly Kurzhal ROCK’n Indianapolis Indianapolis, IN 46217 Tel: (317) 697-4933 E-mail: kellykurzhal@hotmail.com Mooresville - Support Group Contact: Cindy Holder Raising Our Celiac Kids (R.O.C.K.) - Mooresville Chapter 375 E. Countyline Rd. Mooresville, IN 46158 Tel: (317) 831-9871 E-mail: Holders2@comcast.net Iowa Des Moines - Support Group Contact: Lindsay Amadeo Raising Our Celiac Kids (R.O.C.K.) - Des Moines Chapter Des Moines, IA E-mail: llamadeo@yahoo.com Maryland ROCK'n Maryland Contact: Steffani Mykins Tel: (410) 626-1958 E-mail: stfine@comcast.net ROCK’n Maryland Contact: Lindsay Moe Mt. Airy, MD 21771 (443) 799-3432 E-mail: lindsaymoe@ymail.com Massachusetts Longmeadow - Support Group ROCK'n MA Contact: Christie Freda Longmeadow, MA 01106 E-mail: cfreda126@comcast.net Tel: (413) 567-5748 Somerset - Support Group Contact: Stacey Nasrallah ROCK'n Somerset (MA) Somerset, MA 02726 Tel: (508) 674-6211 E-mail: info@somersetrock.org Internet: http://www.somersetrock.org Michigan Ann Arbor - Support Group Contact: Anne MacDougald ROCK’n Michigan E-mail: anniemacdougald@gmail.com Macomb Township - ROCK'n MI Support Group Contact: Kimberly Fanelli Macomb Township, MI 48044 Tel: (586) 226-8480 E-mail: kfanelli@mac.com West Bloomfield - Support Group Contact: Gail Smoler Raising Our Celiac Kids (R.O.C.K.) - West Bloomfield Chapter 4358 Strathdale Court West Bloomfield, MI 48323 Tel: (248) 851-9451 E-mail: GailS63@aol.com Minnesota Minneapolis/St. Paul Support Group Contact: Lynda Benkofske Raising Our Celiac Kids (R.O.C.K.) - ROCK-Minneapolis/St. Paul Chapter 15470 County Rd. 35 Elk River, MN 55330 Tel: (763) 263-7679 E-mail: ljbenkof@ties2.net Mississippi Columbia - Support Group Contact: Beth Broom Raising Our Celiac Kids (R.O.C.K.) - South Mississippi Chapter 50 Wilks Road Columbia, MS 39429 E-mail: sbroom@dixie-net.com Missouri O'Fallon - Support Group Contact: Beth Anne Miller 7264 Sweetcider Lane O'Fallon, MO 63366 Tel: (636) 294-2037 E-mail: Frankbethm@aol.com Montana Billings - ROCK'n Montana Support Group Billings, MT 59102 Contact: Perrin Grubbs E-mail: perrin@bresnan.net Tel: (406) 655-7897 Nevada Reno - Support Group Contact: Carrie Owen Raising Our Celiac Kids (R.O.C.K.) - Reno Chapter Tel: (775) 857-2708 E-mail: Renorockgroup@yahoo.com New Hampshire Manchester - Support Group Contact: Michelle Ouellette ROCK'n New Hampshire Manchester, NH 03102 Tel: (603) 627-1831 E-mail: rocknh2006@gmail.com New Jersey Blairstown - Support Group Contact: Marla Benson Raising Our Celiac Kids (R.O.C.K.) - Blairstown Chapter Blairstown, NJ MBenson890@aol.com (808) 362-7752 Freehold - Support Group Contact: Elissa Carlin Raising Our Celiac Kids (R.O.C.K.) - Freehold Chapter Marlboro, NJ 07746 Tel: (732) 252-8309 E-mail: ElissaC75@aol.com Morristown - Support Group ROCK'n New Jersey Contact: Andrea Kitzis Smith Morristown, NJ 07960 Tel: (201) 965-7309 E-mail: akitsm@att.net Short Hills - Support Group Contact: Ellie Fried Raising Our Celiac Kids (R.O.C.K.) - North Jersey Chapter Tel: (973) 912-0253 New Mexico Albuquerque - Support Group Contact: Traci Shrader Tel: (505) 450-1156 E-mail: tashrader@msn.com New York Auburn - Support Group R.O.C.K.'n Auburn Contact: Nicki Hai Tel: (315) 252-2764 E-mail: jnhai@roadrunner.com Glens Falls Region - Support Group Contact: Lisa Fox Lake George, NY 12845 Tel: (518) 668-5838 E-mail: fox_lisa@hotmail.com ROCK’n Hudson Valley, NY Contact: Terresa Bazelow Thompson Ridge, NY Tel: (845) 609-7432 E-mail: HVNYROCK@aol.com Long Island - Support Group Contact: Christine Lauria East End Raising Our Celiac Kids (R.O.C.K.) E-mail: eastendrock@yahoo.com Internet: www.rockli.com Nassau County- Support Group Contact: Angela Silverstein Raising Our Celiac Kids (R.O.C.K.) - Lynbrook Tel: (516) 593-2904 E-mail: venusangmm1@optonline.net Nassau/Suffolk - Support Group Contact: Randi Albertelli Raising Our Celiac Kids (R.O.C.K.) - Long Island Chapter E-mail: rsquared31@optonline.net Contact 2: Jill Schneider Tel: (516) 551-4564 E-mail: jahms@verizon.net Rockland, NY - Bergen, NJ Raising Our Celiac Kids (R.O.C.K.) - Rockland, NY - Bergen, NJ Chapter Contact: Gabrielle Simon Telephone: (646) 342-6960 Email: nynjrockmom@yahoo.com Rome - Support Group Mohawk Valley R.O.C.K. (upstate New York) Contact: Rebecca Madeira Rome, NY Tel: (315) 337-7671 Upstate - Support Group ROCK'n Upstate New York Contact: Karen Dorazio Jamesville, NY 13078 Tel: (315) 469-8154 E-mail: kdorazio@twcny.rr.com Vestal, NY ROCK’n Vestal, NY Contact: Razi Lissy E-mail: raziher@gmail.com Western New York - Support Group Raising Our Celiac Kids (R.O.C.K.) - Western New York Chapter Buffalo / Niagara Falls NY Contact: Jeanette Yuhnke Tel: (716) 625-8390 Internet: http://www.glutenfreeinwny.com/WNYCeliacKids.php Westchester, NY ROCK’n Westchester, NY Contact: Erica Peltz E-mail: Eps2104@gmail.com Tel: (917) 612-4676 North Carolina Charlotte, Support Group Contact: Nikki Everett Raising Our Celiac Kids (R.O.C.K.) - Charlotte Chapter Huntersville, NC 28078 Tel: (704) 804-4090 E-mail: haircolorexpertise@hotmail.com Harrisburg - Support Group Contact: Linda Witherspoon 5018 Wynford Ct. Harrisburg, NC 28075 Tel: (704) 957-6100 E-mail: Linda.witherspoon@aol.com Stantonsburg - Support Group ROCK’n North Carolina Contact: Carrie Forbes Stantonsburg, NC 27883 Tel: (252) 238-3132 E-mail: gingerlemongirl@gmail.com North Dakota Fargo - Support Group Contact: Stacey Juhnke Tel: (701) 237-4854 E-mail: DSJuhnke@yahoo.com Ohio Akron - Support Group Contact: Sue Krznaric Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter Akron, OH Tel: (330) 253-1509 E-mail: skrznaric@cs.com Akron - Support Group Contact: Therese Semonin Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter CSA Chapter 111, S.O.S. Save Our Stomachs Cincinnati - Support Group Contact: Beth Koenig Raising Our Celiac Kids (R.O.C.K.) - Cincinnati Chapter Cincinnati, OH E-mail: BethKoenig@cinci.rr.com Tel: (513) 923-4435 Cleveland - Support Group ROCK’n Cleveland Contact: Tracey Lavine Solon, OH 44139 Tel: (216) 533-1285 E-mail: Tracey95@aol.com Toledo - ROCK'n Toledo Support Group Contact: Amy Kinkaid Toledo, OH 43615 E-mail: kinkaida@bex.net Tel: (419) 509-6913 Oregon Salem - Support Group Contact: Kristen Klay Raising Our Celiac Kids (R.O.C.K.) - Salem Chapter Tel: (503) 581-3884 E-mail: kristenklay@yahoo.com Pennsylvania Greenville - Support Group Contact: Fiona Garner Raising Our Celiac Kids (R.O.C.K.) - Greenville Chapter Greenville, PA Glenside - Support Group Raising Our Celiac Kids (R.O.C.K.) - Glenside Contact: Wilhelmina Green Glenside, PA 19038 Tel: (215) 756-2708 E-mail: Wilhelmina.green@gmail.com Greensburg - Support Group Contact: Martin Martinosky, Jr. Raising Our Celiac Kids (R.O.C.K.) - Greensburg Chapter Greensburg, PA Tel: (724) 834-3435 E-mail: ROCKchapter@aol.com Hanover - Support Group ROCK’n Hanover Contact: Melissa Panzer Hanover, PA 17331 Tel: (717) 633-1667 E-mail: Glutenfree4life@live.com Harrisburg - Support Group Gluten Intolerance Group of Harrisburg Harrisburg, PA Tel: (717) 520-9817 Lancaster/York - Support Group Contact: Janelle Gregory Tel: (717) 687-8586 E-mail: janellegregory@verizon.net Lansdale - Support Group ROCK Bucks Montgomery Contact: Holly and Steve Staugaitis Lansdale, PA 19446 Tel: (215) 997-2706 E-mail: hollystaugaitis@gmail.com South Carolina Charleston - Support Group Contact: Cathy Leeke Lowcountry R.O.C.K. Tel: (678) 637-3277 E-mail: cwleeke@yahoo.com Clover - Support Group Contact: Lauretta McInnis Raising Our Celiac Kids (R.O.C.K.) - Clover Chapter Tel: (803) 222-5143 E-mail: laurettamcinnis@gmail.com Easley - Support Group Contact: Laura Armstrong Raising Our Celiac Kids (R.O.C.K.) - Easley Chapter Easley, SC Tel: (864) 850-0344 Lexington - Support Group Contact: Gail Fox Raising Our Celiac Kids (R.O.C.K.) - Lexington Chapter Lexington, SC 29072 Tel: (803) 957-7658 E-mail: gailfox@sc.rr.com Tennessee Nashville - Support Group Contact: Janet Lowery Raising Our Celiac Kids (R.O.C.K.) - Nashville Chapter Tel: (615) 758-2674 Woodlawn - Support Group Contact: Shantal Green Woodlawn, TN Tel: (931) 648-2289 Texas Austin - Support Group Contact: Frances Kelley ROCK'n Austin - Alamo Celiac GIG Austin, TX 78739 E-mail: fkelley@austin.rr.com Tel: (512) 301-2224 Dallas/FortWorth - Support Group Contact: Kelly LeMonds, Leader Raising Our Celiac Kids (R.O.C.K.) - Wylie Chapter 1821 Spinnaker Way Drive Wylie, Texas 75098-7855 Tel: (972) 442-9328 E-mail: leader@dallasrock.org Internet: http://www.dallasrock.org Dallas/FortWorth - Support Group Contact: Diane McConnell Raising Our Celiac Kids (R.O.C.K.) - Dallas/FortWorth Chapter Tarrant County, TX Tel: (817) 849-8646 E-mail: fortworthrock@swbell.net Houston - Support Group Contact: Janet Y. Rinehart, Chairman Houston Celiac Sprue Support Group Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 13722 Ashley Run Houston, TX 77077-1514 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Internet: http://www.csaceliacs.org/ Houston - Support Group Contact: Faye Sallee Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 14830 Sagamore Hills Houston, TX 77082 Tel: (281) 496-9166 Houston - ROCK'n Houston Support Group Comtact: Monica Ryan Houston, TX 77025 Tel: (713) 667-1963 E-mail: Mwryan@ipa.net Lubbock - Support Group Contact: Beth Trostle ROCK'n Lubbock Tel: (806) 794-5917 E-mail: calvintrostle@nts-online.net San Antonio - Support Group Contact: Rose and Michael Stevens Raising Our Celiac Kids (R.O.C.K.) - San Antonio Chapter San Antonio, TX Tel: (210) 495-7757 E-mail: info@kidceliac.com Internet: http://www.kidceliac.com Victoria - Support Group Contact: Julie Bauknight Raising Our Celiac Kids (R.O.C.K.) - Victoria Chapter Victoria, TX 77901 Tel: (361) 572-9252 Utah Holladay - Support Group Contact: Cathy Snowball ROCK’n Utah Holladay, UT 84121 E-mail: kileyannsmom@hotmail.com Ogden - Support Group Contact: Eileen Leatherow Raising Our Celiac Kids (R.O.C.K.) - Ogden Chapter Ogden, UT Virginia Ashburn - Support Group Keith Bird Tel: (703) 348-7607 rock@birdmk1.plus.com Bristow - Support Group ROCK’n Bristow Contact: Michael and Elizabeth Brown Bristow, VA 20136 Tel: (703) 753-9161 E-mail: 2xx1xy@comcast.net Fredericksburg - Support Group ROCK’n Fredericksburg Contact: Kathy Paz-Craddock Tel: (703) 507-0609 E-mail: kalalilys@gmail.com Paeonian Springs - Support Group Raising Our Celiac Kids (R.O.C.K.) - Paeonian Springs Becky Shore Tel: (571) 252-0036 E-mail: zoo2u@comcast.net Virginia Beach - Support Group Contact: Cynthia Olson E-mail: glutenfreemom@hotmail.com Washington Bellingham - Support Group Contact: Jean McFadden Layton ROCK'n Washington Bellingham, WA 98229 Tel: (360) 734-1659 E-mail: glutenfreekids@yahoo.com Bothell, WA - Support Group Contact: Lynn Crutcher Rock'n Washington Bothell, WA 98011 Tel: (425) 205-1327 E-mail: gfkids1@yahoo.com Poulsbo - Support Group Contact: Tim & Dawn Simonson Raising Our Celiac Kids (R.O.C.K.) - Poulsbo Chapter Poulsbo, WA 98370 Tel: (360) 779-9292 E-mail: timsimonson@csi.com Seattle - Support Group Contact - Irina Risuhina Raising Our Celiac Kids (R.O.C.K.) - Seattle Chapter E-Mail: iris510@hotmail.com Spokane - Support Group Contact: Jennifer Fancher ROCK'n Spokane, WA Spokane, WA Tel: (509) 891-7250 E-mail: nelsonfancher@live.com Vancouver - Support Group Contact: Theressa Rachetto Vancouver, WA 98662 Tel: (360) 713-1504 E-mail: theressarachetto@gmail.com Yakima - Support Group ROCK’n Yakima, WA Contact: Shanta Gervickas Tel: (509) 965-1130 E-mail: Shanta@network7.com West Virginia Hurricane - Support Group Contact: Karen Daniel Raising Our Celiac Kids (R.O.C.K.) - Hurricane Chapter 340 Green Acres Dr. Hurricane, WV 25526 Tel: (304) 757-0696 E-mail: krdaniel@suddenlink.net Wisconsin DePere - Support Group Contact: Pam Rourke Tel: (920) 339-7867 E-mail: mrourke@new.rr.com Jackson - Support Group Contact: Yvonne Schwalen Raising Our Celiac Kids (R.O.C.K.) - Jackson Chapter E-mail: trainman280@netzero.net R.O.C.K. Chapters in Canada Alberta ROCK 'n Olds Olds, Alberta, Canada Amy Smart 403-415-5789 asmart@telus.net
  8. The National Celiac Association remains dedicated to the mission of supporting, educating and advocating for individuals with celiac disease and non-celiac gluten sensitivity, their families and communities across the nation. Our grassroots approach hasn’t changed in the 24 years we have been serving the community. Wherever you may reside, you matter to us and we are here to help you! We welcome support groups who would like to team up with us to provide education and support on a local level. Over 70 support groups and former CSA chapters are in the process of joining our team and more would be wonderful. Together our outreach will be both nurturing and empowering. Executive Director Lee Graham Web site: https://www.nationalceliac.org
  9. Danna Korn founded R.O.C.K. in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn. Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet. Raising Our Celiac Kids is a support group for parents, families and friends of kids with celiac disease or gluten intolerance. We welcome families of autistic kids involved in a gluten-free/casein-free dietary intervention program. We concentrate on dealing with the unique challenges that we have, including: Finding "fun" gluten-free treats for kids Menu ideas for school lunches, quick dinners, and sports snacks Helping the kids to take responsibility for reading labels, cooking and planning/preparing food How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere Halloween, Easter, and other special days - how do we include our kids safely? Educating day-care providers and teachers - without burdening them Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids Ensuring our kids won't cheat, and what to do WHEN they do Sending kids away to camp, friends' houses, and other times when we're not around to help The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more) What do R.O.C.K. chapters do? R.O.C.K. chapters have R.O.C.K. parties! How often you meet will be up to you and your chapter members, but we suggest meeting every two months to start; you can judge from that point whether you'd like to meet more or less often. We'd like to eventually have a chat room, where local chapters can talk to each other or with other chapter members. (In the meantime, people can chat at http://groups.yahoo.com/group/CeliacKids). What goes on at a R.O.C.K. party? R.O.C.K. parties are for the kids and the adults. The kids enjoy gluten-free food and play, while the parents exchange new-product information, questions and concerns, and anything that they feel is pertinent. You may invite speakers (child psychologists, pediatricians, pediatric gastroenterologists, dietitians), and even provide entertainment (clowns, face painters, toys) for the kids. Remember your community centers - they often have teenagers who will entertain the kids - for free! Remember, you may have just a few families at first, but "build it and they will come" - keep it in mind! Should I start a R.O.C.K. chapter or do something on my own? I don't personally profit from any R.O.C.K. activities, so it doesn't benefit me either way. My vision for R.O.C.K. is to provide accurate, supportive information to families of gluten-free kids to make their lives easier and their kids' lives more enjoyable. The more cohesive we are, the more credible we are to new members, vendors, and the gluten-free community as a whole. If you decide to pursue a group on your own, I sincerely wish you the best of luck and hope you'll ask me for help in setting up your group if you need it. If there isn't a R.O.C.K. chapter in your area yet and you're interested in starting one, please contact Danna Korn at danna@dannakorn.com. R.O.C.K. Chapters in the United States Alabama Support Group - Mobile Contact: Marilyn Taylor ROCK’n Mobile, Alabama Tel: (251) 633-3528 E-mail: Taylor6211@bellsouth.net Slocomb - Support Group Contact: Nichole Alexander E-mail: mamma_hen3@hotmail.com Tel: (334) 886-7150 Alaska Chugiak - Support Group Raising Our Celiac Kids (R.O.C.K.) - ROCK'n Alaska Contact: Debbie Saddler Chugiak, AK 99567 Tel: (907) 688-6879 E-mail: alaskadebbie@gmail.com Arizona Gilbert - Support Group Raising Our Celiac Kids (R.O.C.K.) - Gilbert Chapter Contact: Deanna Frazee Gilbert, AZ Tel: (480) 641-8821 E-mail: deannafrazee@hotmail.com Phoenix - Support Group Greater Phoenix R.O.C.K. Contact: Lisa Potts Email: phoenixceliackids@gmail.com FB Page: facebook.com/PHX.ROCK Phone: (858) 442-5956 E-mail: lisa.potts4911@gmail.com Internet: www.phoenixrock.org Tucson - Support Group Raising Our Celiac Kids (R.O.C.K.) - Tucson Chapter Contact: Liz Attanasio Tel: (520) 877-9181 Tucson - ROCK'n Tucson Contact: Shelli Hanks Tucson, AZ 85750 Email: TucsonROCK@comcast.net Tel: (520) 577-0774 Arkansas Fayetteville, AR Melanie Faught Fayetteville, AR 72704 Tel: (479) 582-9232 E-mail: melaniefaught@cox.net California Conejo Valley - Support Group ROCK'n Conejo Valley Contact: Melissa Riches Westlake Village, CA 91361 Tel: (818) 706-0197 E-mail: melissa.riches@sbcglobal.net Danville - Support Group Contact: Ann Reigelman Raising Our Celiac Kids (R.O.C.K.) - Danville Chapter Danville, CA E-mail: areigelman@yahoo.com Lake Balboa - Support Group Contact: Melissa Gray Raising Our Celiac Kids (R.O.C.K.) - Lake Balboa Chapter Tel: (818) 510-0534 E-mail: Melissagray808@gmail.com Los Angeles - Support Group Contact 1: Amy Harley Tel: (818) 249-2432 E-mail: harleyhome@earthlink.net Contact 2: Cheryl Cohen Tel: (818) 784-4516 E-mail: cohencheryl@yahoo.com Moreno Valley - Support Group Contact: Kellee Shearer Raising Our Celiac Kids (R.O.C.K.) - Moreno Valley Chapter 10034 Snipe Circle Moreno Valley, CA 92557 Tel: (951) 242-8448 E-mail: Treshearer@aol.com Orange County - Support Group Contacts: Randi Leinen Raising Our Celiac Kids (R.O.C.K.) - Orange County Chapter E-mail: RMLeinen@aol.com ROCK’n Orange County, CA Contact: Drew Grant Tel: (949) 257-6349 E-mail: orangecountyrock@gmail.com Palo Alto - Support Group Contact: Kelly Velez or Debbie Duncan Bay Area ROCK E-mail: kellyvelez@comcast.net Tel: (650) 303-8409 E-mail: debbie@debbieduncan.com Tel: (650) 494-6959 San Diego - Support Group Raising Our Celiac Kids (R.O.C.K.) - San Diego Chapter Contact: Brenda McDowell E-mail: sdrockchapter@gmail.com San Francisco - Support Group Contact: Lisa Palme Raising Our Celiac Kids (R.O.C.K.) - San Francisco Chapter E-mail: palmer@smccd.net Sebastopol - Support Group ROCK North Bay Chapter Contact: Jennifer Iscol Sebastopol, CA 95472 Tel: (707) 824-5830 E-mail: iscol@aol.com Visalia (Central) - Support Group Contact: Shannon Williams Tel: (559) 741-1671 Visalia, CA Colorado Peyton - Support Group ROCK’n Peyton, CO Crystal Brauer Tel: (719) 494-8590 E-mail: Brauer.family@yahoo.com Connecticut Raising Our Celiac Kids (R.O.C.K) Fairfield County CT Contact: Karen Loscalzo/ Monika Lazaro/ Carolyn Caney E-mail: rockfairfieldcounty@gmail.com Internet: www.ROCKFairfieldCounty.com Simsbury - Support Group Raising Our Celiac Kids - R.O.C.K. - Simsbury Chapter Contact: Mark & Tracy Saperstein Tel: (860) 651-4857 E-mail: mtbahs@comcast.net Waterford - Support Group Raising Our Celiac Kids - R.O.C.K. - Waterford Chapter Contact: Donna Kensel Waterford, CT E-mail: CtCeliacKids@aol.com District of Columbia (Washington D.C.) District of Columbia - Support Group Contact: Linda Hickman Northern VA/Washington DC R.O.C.K. Tel: (410) 290-5224 E-mail: hickman68@verizon.net Florida Apopka - Support Group Contact: Deborah Pfeifle Raising Our Celiac Kids (R.O.C.K.) - Apopka Chapter Apopka, FL 32712 Tel: (407) 880-6104 E-mail: dpfeifle@earthlink.net Coral Springs/Palm Beach - Support Group Contacts: Janna Faulhaber and Stacey Galper Raising Our Celiac Kids (R.O.C.K.) - Coral Springs/Palm Beach Chapter Tel: (954) 255-7855 E-mail: Staceynagel@paxson.com Odessa (Tampa) - Support Group Contact: Terri Willingham Raising Our Celiac Kids (R.O.C.K.) - Odessa Chapter Orlando - ROCK'n Celebration - Support Group Contact: Rose Parvaz Celebration, FL 34747 E-mail: rose.parvaz@celebration.fl.us Palm Beach gardens - Support Group ROCK'n Palm Beach Gardens Contact: Kimberly Wade Palm Beach Gardens, FL 33418 E-mail: tkcrw@comcast.net Tel: (561) 625-9005 Tampa - Support Group Contact: Melissa Ransdell Raising Our Celiac Kids (R.O.C.K.) - Tampa Chapter 14521 Nettle Creek Rd. Tampa, FL 33624 Tel: (813) 265-8105 Georgia Atlanta - Support Group Contact: Jeff Lewis, M.D. Children's Center for Digestive Health Care Raising Our Celiac Kids (R.O.C.K.) - Atlanta Chapter E-mail: jlewis@ccdhc.org Illinois Chicago - Support Group ROCK'n Chicago Contact: Alexandra Vavouliotis Tel: (847)-962-7244 E-mail: alexvav24@mac.com Dekalb - Support Group Contact: Audrey O'Sullivan Raising Our Celiac Kids (R.O.C.K.) - Stillman Valley Chapter Dekalb, IL Tel: (815) 756-2606 E-mail: Audrey08@aol.com ROCKn DuPage & Cook County Aleksandra de Leon -DuPage County E-mail: aleksandra.deleon@gmail.com Tel: 630-745-7429 Ilene Harris- Cook County E-mail: isf27@yahoo.com Tel: 847-222-9950 Moline - Support Group Contact: Lesley Lamphier ROCK'n Illinois (Moline) Moline, IL 61265 Tel: (309) 736-1507 E-mail: celiackids@mchsi.com Springfield - Support Group Land of Lincoln Celiac Support Group Contact: Joyce Hall Raising Our Celiac Kids (R.O.C.K.) - Springfield Chapter Springfield, IL Washington - Support Group Heart of Illinois Celiac Kids Contact: Samantha Young E-mail: info@hoiceliackids.com Indiana Henryville - Support Group Contact: Kristie Williams ROCK'n Indiana (Henryville) Henryville, IN 47126 Tel: (812) 294-1179 E-mail: kristiewilliamsrn@hotmail.com Indianapolis - Support Group Contact: Kelly Kurzhal ROCK’n Indianapolis Indianapolis, IN 46217 Tel: (317) 697-4933 E-mail: kellykurzhal@hotmail.com Mooresville - Support Group Contact: Cindy Holder Raising Our Celiac Kids (R.O.C.K.) - Mooresville Chapter 375 E. Countyline Rd. Mooresville, IN 46158 Tel: (317) 831-9871 E-mail: Holders2@comcast.net Iowa Des Moines - Support Group Contact: Lindsay Amadeo Raising Our Celiac Kids (R.O.C.K.) - Des Moines Chapter Des Moines, IA E-mail: llamadeo@yahoo.com Maryland ROCK'n Maryland Contact: Steffani Mykins Tel: (410) 626-1958 E-mail: stfine@comcast.net ROCK’n Maryland Contact: Lindsay Moe Mt. Airy, MD 21771 (443) 799-3432 E-mail: lindsaymoe@ymail.com Massachusetts Longmeadow - Support Group ROCK'n MA Contact: Christie Freda Longmeadow, MA 01106 E-mail: cfreda126@comcast.net Tel: (413) 567-5748 Somerset - Support Group Contact: Stacey Nasrallah ROCK'n Somerset (MA) Somerset, MA 02726 Tel: (508) 674-6211 E-mail: info@somersetrock.org Internet: http://www.somersetrock.org Michigan Ann Arbor - Support Group Contact: Anne MacDougald ROCK’n Michigan E-mail: anniemacdougald@gmail.com Macomb Township - ROCK'n MI Support Group Contact: Kimberly Fanelli Macomb Township, MI 48044 Tel: (586) 226-8480 E-mail: kfanelli@mac.com West Bloomfield - Support Group Contact: Gail Smoler Raising Our Celiac Kids (R.O.C.K.) - West Bloomfield Chapter 4358 Strathdale Court West Bloomfield, MI 48323 Tel: (248) 851-9451 E-mail: GailS63@aol.com Minnesota Minneapolis/St. Paul Support Group Contact: Lynda Benkofske Raising Our Celiac Kids (R.O.C.K.) - ROCK-Minneapolis/St. Paul Chapter 15470 County Rd. 35 Elk River, MN 55330 Tel: (763) 263-7679 E-mail: ljbenkof@ties2.net Mississippi Columbia - Support Group Contact: Beth Broom Raising Our Celiac Kids (R.O.C.K.) - South Mississippi Chapter 50 Wilks Road Columbia, MS 39429 E-mail: sbroom@dixie-net.com Missouri O'Fallon - Support Group Contact: Beth Anne Miller 7264 Sweetcider Lane O'Fallon, MO 63366 Tel: (636) 294-2037 E-mail: Frankbethm@aol.com Montana Billings - ROCK'n Montana Support Group Billings, MT 59102 Contact: Perrin Grubbs E-mail: perrin@bresnan.net Tel: (406) 655-7897 Nevada Reno - Support Group Contact: Carrie Owen Raising Our Celiac Kids (R.O.C.K.) - Reno Chapter Tel: (775) 857-2708 E-mail: Renorockgroup@yahoo.com New Hampshire Manchester - Support Group Contact: Michelle Ouellette ROCK'n New Hampshire Manchester, NH 03102 Tel: (603) 627-1831 E-mail: rocknh2006@gmail.com New Jersey Blairstown - Support Group Contact: Marla Benson Raising Our Celiac Kids (R.O.C.K.) - Blairstown Chapter Blairstown, NJ MBenson890@aol.com (808) 362-7752 Freehold - Support Group Contact: Elissa Carlin Raising Our Celiac Kids (R.O.C.K.) - Freehold Chapter Marlboro, NJ 07746 Tel: (732) 252-8309 E-mail: ElissaC75@aol.com Morristown - Support Group ROCK'n New Jersey Contact: Andrea Kitzis Smith Morristown, NJ 07960 Tel: (201) 965-7309 E-mail: akitsm@att.net Short Hills - Support Group Contact: Ellie Fried Raising Our Celiac Kids (R.O.C.K.) - North Jersey Chapter Tel: (973) 912-0253 New Mexico Albuquerque - Support Group Contact: Traci Shrader Tel: (505) 450-1156 E-mail: tashrader@msn.com New York Auburn - Support Group R.O.C.K.'n Auburn Contact: Nicki Hai Tel: (315) 252-2764 E-mail: jnhai@roadrunner.com Glens Falls Region - Support Group Contact: Lisa Fox Lake George, NY 12845 Tel: (518) 668-5838 E-mail: fox_lisa@hotmail.com ROCK’n Hudson Valley, NY Contact: Terresa Bazelow Thompson Ridge, NY Tel: (845) 609-7432 E-mail: HVNYROCK@aol.com Long Island - Support Group Contact: Christine Lauria East End Raising Our Celiac Kids (R.O.C.K.) E-mail: eastendrock@yahoo.com Internet: www.rockli.com Nassau County- Support Group Contact: Angela Silverstein Raising Our Celiac Kids (R.O.C.K.) - Lynbrook Tel: (516) 593-2904 E-mail: venusangmm1@optonline.net Nassau/Suffolk - Support Group Contact: Randi Albertelli Raising Our Celiac Kids (R.O.C.K.) - Long Island Chapter E-mail: rsquared31@optonline.net Contact 2: Jill Schneider Tel: (516) 551-4564 E-mail: jahms@verizon.net Rockland, NY - Bergen, NJ Raising Our Celiac Kids (R.O.C.K.) - Rockland, NY - Bergen, NJ Chapter Contact: Gabrielle Simon Telephone: (646) 342-6960 Email: nynjrockmom@yahoo.com Rome - Support Group Mohawk Valley R.O.C.K. (upstate New York) Contact: Rebecca Madeira Rome, NY Tel: (315) 337-7671 Upstate - Support Group ROCK'n Upstate New York Contact: Karen Dorazio Jamesville, NY 13078 Tel: (315) 469-8154 E-mail: kdorazio@twcny.rr.com Vestal, NY ROCK’n Vestal, NY Contact: Razi Lissy E-mail: raziher@gmail.com Western New York - Support Group Raising Our Celiac Kids (R.O.C.K.) - Western New York Chapter Buffalo / Niagara Falls NY Contact: Jeanette Yuhnke Tel: (716) 625-8390 Internet: http://www.glutenfreeinwny.com/WNYCeliacKids.php Westchester, NY ROCK’n Westchester, NY Contact: Erica Peltz E-mail: Eps2104@gmail.com Tel: (917) 612-4676 North Carolina Charlotte, Support Group Contact: Nikki Everett Raising Our Celiac Kids (R.O.C.K.) - Charlotte Chapter Huntersville, NC 28078 Tel: (704) 804-4090 E-mail: haircolorexpertise@hotmail.com Harrisburg - Support Group Contact: Linda Witherspoon 5018 Wynford Ct. Harrisburg, NC 28075 Tel: (704) 957-6100 E-mail: Linda.witherspoon@aol.com Stantonsburg - Support Group ROCK’n North Carolina Contact: Carrie Forbes Stantonsburg, NC 27883 Tel: (252) 238-3132 E-mail: gingerlemongirl@gmail.com North Dakota Fargo - Support Group Contact: Stacey Juhnke Tel: (701) 237-4854 E-mail: DSJuhnke@yahoo.com Ohio Akron - Support Group Contact: Sue Krznaric Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter Akron, OH Tel: (330) 253-1509 E-mail: skrznaric@cs.com Akron - Support Group Contact: Therese Semonin Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter CSA Chapter 111, S.O.S. Save Our Stomachs Cincinnati - Support Group Contact: Beth Koenig Raising Our Celiac Kids (R.O.C.K.) - Cincinnati Chapter Cincinnati, OH E-mail: BethKoenig@cinci.rr.com Tel: (513) 923-4435 Cleveland - Support Group ROCK’n Cleveland Contact: Tracey Lavine Solon, OH 44139 Tel: (216) 533-1285 E-mail: Tracey95@aol.com Toledo - ROCK'n Toledo Support Group Contact: Amy Kinkaid Toledo, OH 43615 E-mail: kinkaida@bex.net Tel: (419) 509-6913 Oregon Salem - Support Group Contact: Kristen Klay Raising Our Celiac Kids (R.O.C.K.) - Salem Chapter Tel: (503) 581-3884 E-mail: kristenklay@yahoo.com Pennsylvania Greenville - Support Group Contact: Fiona Garner Raising Our Celiac Kids (R.O.C.K.) - Greenville Chapter Greenville, PA Glenside - Support Group Raising Our Celiac Kids (R.O.C.K.) - Glenside Contact: Wilhelmina Green Glenside, PA 19038 Tel: (215) 756-2708 E-mail: Wilhelmina.green@gmail.com Greensburg - Support Group Contact: Martin Martinosky, Jr. Raising Our Celiac Kids (R.O.C.K.) - Greensburg Chapter Greensburg, PA Tel: (724) 834-3435 E-mail: ROCKchapter@aol.com Hanover - Support Group ROCK’n Hanover Contact: Melissa Panzer Hanover, PA 17331 Tel: (717) 633-1667 E-mail: Glutenfree4life@live.com Harrisburg - Support Group Gluten Intolerance Group of Harrisburg Harrisburg, PA Tel: (717) 520-9817 Lancaster/York - Support Group Contact: Janelle Gregory Tel: (717) 687-8586 E-mail: janellegregory@verizon.net Lansdale - Support Group ROCK Bucks Montgomery Contact: Holly and Steve Staugaitis Lansdale, PA 19446 Tel: (215) 997-2706 E-mail: hollystaugaitis@gmail.com South Carolina Charleston - Support Group Contact: Cathy Leeke Lowcountry R.O.C.K. Tel: (678) 637-3277 E-mail: cwleeke@yahoo.com Clover - Support Group Contact: Lauretta McInnis Raising Our Celiac Kids (R.O.C.K.) - Clover Chapter Tel: (803) 222-5143 E-mail: laurettamcinnis@gmail.com Easley - Support Group Contact: Laura Armstrong Raising Our Celiac Kids (R.O.C.K.) - Easley Chapter Easley, SC Tel: (864) 850-0344 Lexington - Support Group Contact: Gail Fox Raising Our Celiac Kids (R.O.C.K.) - Lexington Chapter Lexington, SC 29072 Tel: (803) 957-7658 E-mail: gailfox@sc.rr.com Tennessee Nashville - Support Group Contact: Janet Lowery Raising Our Celiac Kids (R.O.C.K.) - Nashville Chapter Tel: (615) 758-2674 Woodlawn - Support Group Contact: Shantal Green Woodlawn, TN Tel: (931) 648-2289 Texas Austin - Support Group Contact: Frances Kelley ROCK'n Austin - Alamo Celiac GIG Austin, TX 78739 E-mail: fkelley@austin.rr.com Tel: (512) 301-2224 Dallas/FortWorth - Support Group Contact: Kelly LeMonds, Leader Raising Our Celiac Kids (R.O.C.K.) - Wylie Chapter 1821 Spinnaker Way Drive Wylie, Texas 75098-7855 Tel: (972) 442-9328 E-mail: leader@dallasrock.org Internet: http://www.dallasrock.org Dallas/FortWorth - Support Group Contact: Diane McConnell Raising Our Celiac Kids (R.O.C.K.) - Dallas/FortWorth Chapter Tarrant County, TX Tel: (817) 849-8646 E-mail: fortworthrock@swbell.net Houston - Support Group Contact: Janet Y. Rinehart, Chairman Houston Celiac Sprue Support Group Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 13722 Ashley Run Houston, TX 77077-1514 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Internet: http://www.csaceliacs.org/ Houston - Support Group Contact: Faye Sallee Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 14830 Sagamore Hills Houston, TX 77082 Tel: (281) 496-9166 Houston - ROCK'n Houston Support Group Comtact: Monica Ryan Houston, TX 77025 Tel: (713) 667-1963 E-mail: Mwryan@ipa.net Lubbock - Support Group Contact: Beth Trostle ROCK'n Lubbock Tel: (806) 794-5917 E-mail: calvintrostle@nts-online.net San Antonio - Support Group Contact: Rose and Michael Stevens Raising Our Celiac Kids (R.O.C.K.) - San Antonio Chapter San Antonio, TX Tel: (210) 495-7757 E-mail: info@kidceliac.com Internet: http://www.kidceliac.com Victoria - Support Group Contact: Julie Bauknight Raising Our Celiac Kids (R.O.C.K.) - Victoria Chapter Victoria, TX 77901 Tel: (361) 572-9252 Utah Holladay - Support Group Contact: Cathy Snowball ROCK’n Utah Holladay, UT 84121 E-mail: kileyannsmom@hotmail.com Ogden - Support Group Contact: Eileen Leatherow Raising Our Celiac Kids (R.O.C.K.) - Ogden Chapter Ogden, UT Virginia Ashburn - Support Group Keith Bird Tel: (703) 348-7607 rock@birdmk1.plus.com Bristow - Support Group ROCK’n Bristow Contact: Michael and Elizabeth Brown Bristow, VA 20136 Tel: (703) 753-9161 E-mail: 2xx1xy@comcast.net Fredericksburg - Support Group ROCK’n Fredericksburg Contact: Kathy Paz-Craddock Tel: (703) 507-0609 E-mail: kalalilys@gmail.com Paeonian Springs - Support Group Raising Our Celiac Kids (R.O.C.K.) - Paeonian Springs Becky Shore Tel: (571) 252-0036 E-mail: zoo2u@comcast.net Virginia Beach - Support Group Contact: Cynthia Olson E-mail: glutenfreemom@hotmail.com Washington Bellingham - Support Group Contact: Jean McFadden Layton ROCK'n Washington Bellingham, WA 98229 Tel: (360) 734-1659 E-mail: glutenfreekids@yahoo.com Bothell, WA - Support Group Contact: Lynn Crutcher Rock'n Washington Bothell, WA 98011 Tel: (425) 205-1327 E-mail: gfkids1@yahoo.com Poulsbo - Support Group Contact: Tim & Dawn Simonson Raising Our Celiac Kids (R.O.C.K.) - Poulsbo Chapter Poulsbo, WA 98370 Tel: (360) 779-9292 E-mail: timsimonson@csi.com Seattle - Support Group Contact - Irina Risuhina Raising Our Celiac Kids (R.O.C.K.) - Seattle Chapter E-Mail: iris510@hotmail.com Spokane - Support Group Contact: Jennifer Fancher ROCK'n Spokane, WA Spokane, WA Tel: (509) 891-7250 E-mail: nelsonfancher@live.com Vancouver - Support Group Contact: Theressa Rachetto Vancouver, WA 98662 Tel: (360) 713-1504 E-mail: theressarachetto@gmail.com Yakima - Support Group ROCK’n Yakima, WA Contact: Shanta Gervickas Tel: (509) 965-1130 E-mail: Shanta@network7.com West Virginia Hurricane - Support Group Contact: Karen Daniel Raising Our Celiac Kids (R.O.C.K.) - Hurricane Chapter 340 Green Acres Dr. Hurricane, WV 25526 Tel: (304) 757-0696 E-mail: krdaniel@suddenlink.net Wisconsin DePere - Support Group Contact: Pam Rourke Tel: (920) 339-7867 E-mail: mrourke@new.rr.com Jackson - Support Group Contact: Yvonne Schwalen Raising Our Celiac Kids (R.O.C.K.) - Jackson Chapter E-mail: trainman280@netzero.net R.O.C.K. Chapters in Canada Alberta ROCK 'n Olds Olds, Alberta, Canada Amy Smart 403-415-5789 asmart@telus.net
  10. The following is from a talk given at the Gluten Intolerance Group Annual Educational Seminar on April 1, 1995 by Dr. Alessio Fasano, Pediatric Gastroenterologist, University of Maryland School of Medicine which was also reported in the May 1995 issue of the GIG Newsletter. The findings of these experts indicate that the incidence of celiac disease in the general population could be as high as 1 in 300-500 people when one takes into account all forms of the disease. Here is a report of the meeting: The question which was brought up was How prevalent is celiac disease?. Although there is much data on the incidence of celiac disease that has been collected in Europe, there is almost no data from the United States. After compiling data on the incidence of celiac disease in Europe, something very unusual was noticed. Two cities in Europe - Malmo, Sweden and Copenhagen, Denmark, which lie only 20 miles apart, seem to have a large difference in the incidence of celiac disease. In Malmo, the incidence was 1 in 500 people, which is quite high, while in Copenhagen it was 1 out of 11,000, which is much lower. Keep in mind that these figures represent only those patients whose celiac disease had been clinically diagnosed by a small intestinal biopsy. There are three major ways in which celiac disease presents itself in patients. The first are the asymptomatic patients who have no symptoms whatsoever, but exhibit damage to their small intestines upon examination. The second are patients with the latent form which means they have blood-tested positive for celiac disease, nut no tissue damage has occurred yet. This form will later develop into the typical or atypical forms. The third is the typical presentation, which shows up when the patient is between 6 and 18 months old. These patients develop the classic symptoms: diarrhea, fatty stools, lack of weight gain, irritability and anorexia. Typical presentations of celiac disease are rather rare in comparison to the other forms, which leads to the overall under-diagnosis of celiac disease, and is illustrated by the following statistics: Clinical Presentation Cumulative Prevalence Classical (Typical) Form 1 in 2500 Atypical - Late Onset Form 1 in 1500 Asymptomatic Form 1 in 1000 Latent Form (celiac disease Associated with other Diseases) 1 in 300-500* *Researchers in Italy have reached the conclusion that the incidence of celiac disease would be more like 1 person with celiac sprue for every 300 to 500 in the general population, when looking at all forms of the disease. Serological screening using anti-gliadin and anti-endomysial antibodies allows doctors to obtain a much more accurate picture of the actual number of people affected by celiac disease. In Europe, for example, researchers have found a much higher incidence of celiac disease than expected (1 in 300!), and it is spread uniformly throughout the population. Researchers re-tested the cities of Malmo and Copenhagen and found the incidence in Copenhagen to be 1 in 300. The difference between the two cities is in the clinical presentation of the disease. In Denmark there were more people who exhibited symptoms of osteoporosis, dermatitis herpetiformis, short stature and other atypical presentations. The awareness of physicians that these presentations could be celiac disease was very low. The discussion then turned to the United States: The next question discussed at the meeting was: What is the true incidence of celiac disease in the United States? The researchers believe that the recently discovered antibody markers will help in answering this question. According to them, we should soon be able to tell whether the low estimates for celiac disease in the US are fact, or if atypical presentations of celiac disease have been overlooked, thus resulting in the extraordinary low level of diagnosed celiacs. A study conducted at the University of Maryland looked at 159 children with atypical symptoms (short stature, poor weight gain, chronic diarrhea, abdominal pain, asymptomatic relatives of celiacs). The following chart summarizes the study: Study: 159 Children With Atypical Symptoms* Symptom Group No. Screened Positive Screen Negative Screen Short stature 78 7 71 Poor weight gain 21 6 15 Chronic diarrhea 17 1 16 Abdominal Pain 8 1 7 Asymptomatic 35 2 33 *Please keep in mind that this study was not based on a random cross-section of the population, but, rather on children who already exhibited atypical symptoms. It is crucial to make the correct diagnosis, and to keep even asymptomatic people free of gluten . This is due to the associated morbidity, such as chronic ill health. With regard to the pediatric population, permanent stunted growth may result from a misdiagnosis. If the physicians fail to make a timely diagnosis, there is no time for catch-up growth, and the individual may be short forever. The same is true with skeletal disorders such as osteoporosis. Everyone with celiac sprue who experiences osteoporosis must place a certain amount of blame on the physician for not diagnosing celiac disease in time to prevent such demineralization.
  11. Celiac Disease Foundation is the nation’s leading disease advocacy organization for celiac disease and non-celiac gluten/wheat sensitivity. We drive diagnosis, treatment, and a cure through research, education, and advocacy to improve the quality of life for all those affected. Through iCureCeliac®, our national registry dedicated to patient-centered research, we collaborate with researchers, clinicians, and industry to better understand, and ultimately cure, celiac disease. Since our founding in 1990, Celiac Disease Foundation continues to champion many battles: federal recognition of celiac disease and labeling standards for gluten-free foods, improved diagnostic tools, widespread patient and provider education, access to mainstream gluten-free products, and the need for better treatments and a cure. 20350 Ventura Blvd. Suite 240 Woodland Hills, CA 91364 Tel: (818) 716-1513 E-mail: cdf@celiac.org Internet: http://www.celiac.org
  12. The Gluten Intolerance Group of North America, also known as GIG, is a 501©(3) non-profit organization funded by private donations including the Combined Federal Campaign, United Way Designated Giving, Employer Matching Funds; proceeds from memberships, the sale of products and our educational resources. We rely on your contributions, which are tax deductible. 85% or more of our revenue is used to support our programs. GIG is at the forefront of innovative action and is respected globally as a powerful leader in the celiac community. GIGs volunteers, staff, and Board are knowledgeable and our materials and resources are credible. Our Mission is to provide support to persons with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, in order to live healthy lives. GIG Branches help to fulfill GIGs mission on a local and regional level through programs tailored to their community. GIG VISION The vision of the Gluten Intolerance Group of North America is one of mutual support, acceptance, and respect for all persons living with gluten intolerances and working with this community. GIG envisions a united gluten intolerant community in which all persons feel they are healthy, are positively nurtured to live life to the fullest, and are involved and contributing citizens. GIG PROGRAMS FULFILLING THE MISSION GIG fulfills its mission of supporting persons living with gluten intolerances through programs directed to consumers, health professionals and the public. GIGR programs provide: Support and education Awareness and advocacy Research awareness and support GIG is dedicated to providing accurate, scientific, evidence-based information. Cynthia Kupper, RD, celiac disease, Executive Director 31214 - 124 Ave SE Auburn WA 98092 Phone: 253-833-6655 Fax: 253-833-6675 Web sites: www.gluten.net; www.GFCO.org; www.GlutenFreeRestaurants.org Email: info@GLUTEN.net
  13. The Gluten Intolerance Group (G.I.G.) produces an excellent news letter. Their address is: The Gluten Intolerance Group of North America, Contact: Cynthia Kupper, C.R.D., C.D.E 15110 - 10 Ave SW, Suite A Seattle WA 98166-1820 Phone: 206-246-6652, Fax: 206-246-6531 Email: gig@accessone.com
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