Celiac.com Disease & Gluten-Free Diet Support Since 1995 - Articles

Celiac.com 06/05/2023 - Gluten-related disorders involve immune responses triggered by gluten ingestion, and they affect millions of individuals worldwide. With an overall prevalence of about 5%, gluten-related disorders represent a potentially significant health concern. The most prominent gluten-related disorder is celiac disease, a T-cell-mediated autoimmune disease with a wide range of symptoms, including diarrhea, malabsorption, and even lymphoma. Despite extensive research on gluten-related disorders, the environmental factors that contribute to the diverse reactions in susceptible individuals have remained elusive. However, recent studies have shed light on a potential link between pathogens and the development of celiac disease, transcending the traditional notion of molecular mimicry. Scientists have long speculated that pathogens might act as environmental triggers for celiac disease by exploiting molecular mimicry mechanisms. Molecular mimicry happens when foreign molecules resemble self-antigens, leading to immune system confusion and subsequent attacks on host tissues. In this context, it is plausible that pathogens may exhibit molecular, structural, and physical similarities to gluten, thereby inducing immune responses in susceptible individuals. Analysis of the 33-mer and p31-43 Gliadin Peptides To investigate this hypothesis further, researchers conducted a comprehensive analysis of the two most significant gluten peptides involved in celiac disease: the 33-mer and p31-43 gliadin peptides. The research team included Diego S. Vazquez, Hanna M. Schilbert, and Veronica I. Dodero, Francesco Asnicar, Academic Editor and Serena Manara. They are variously affiliated with the Grupo de Biología Estructural y Biotecnología (GBEyB-IMBICE), Departamento de Ciencia y Tecnología, Universidad Nacional de Quilmes, Buenos Aires, Argentina; the Consejo Nacional de Investigaciones Científicas y Técnicas (CONICET) in Buenos Aires, Argentina. Streptococcus Pneumoniae and Granulicatella sp. Show Strong Similarity to the Gliadin Peptides Employing advanced bioinformatics techniques, the team performed a stringent BLASTp search, and identified high sequence similarity regions between these gliadin peptides and proteins derived from bacterial pathogens. Notably, extracellular proteins from Streptococcus pneumoniae and Granulicatella sp. displayed a strong similarity to the gliadin peptides. Further examinations involved molecular dynamics calculations and the construction of updated α-2-gliadin models. These investigations revealed close spatial localization and solvent-exposure of the 33-mer and p31-43 peptides. By comparing these structures with the homology models and localization predictors of pathogen-related proteins, the researchers identified putative functions of the pathogen-derived sequences, such as T-cell epitopes and SH3/WW-binding domains. Moreover, shape and size parallels between the pathogenic agents and the superstructures of gliadin peptides led to the formulation of novel hypotheses concerning the activation of innate immunity and dysbiosis. The researchers propose that these pathologically relevant gluten-derived peptides may behave as non-replicating pathogens, introducing exciting avenues for further exploration at the intersection of innate immunity, microbiome research, and the field of food science. Conclusions These findings suggest that the relationship between gluten and pathogens is more intricate than previously understood. The sequence, structural, and physical similarities between gluten peptides and pathogen-derived proteins raise intriguing questions about the role of pathogens in the development of gluten-related disorders. While the molecular mimicry hypothesis remains relevant, this research expands the scope of investigation, highlighting the need to consider a broader range of factors that may contribute to the activation of the immune system in individuals susceptible to celiac disease. By unraveling the mechanisms behind the immune responses triggered by gluten ingestion, researchers are helping to improve diagnosis, treatment, and prevention strategies for celiac disease and other gluten-related disorders. Read more in the Int J Mol Sci. 2021 Sep; 22(17): 9278

Celiac.com 06/03/2023 - This article first appeared in the Australian Coeliac newsletter, and is reprinted here by permission of the Australian Coeliac Society. By Robert Anderson, MD, Peter Gibson, MD and Finlay Macrae, MD. In 2002, the diagnosis of celiac disease means an end to delicious French pastries and the casual approach to diet that most people in the community enjoy. Today, strict adherence to a gluten free diet is the only effective treatment for celiac disease. A Vaccine for Celiac Disease? The good news is that new research in celiac disease suggests a "vaccine" may be feasible! Such a development has come from a greater understanding of the cause of celiac disease. You might say that we have known the cause of celiac disease for decades—"something" in gluten. But, there is more! We are all exposed to gluten but only some of us get celiac disease. This other factor is the characteristic of the immune system that makes the small intestine a "battleground" when it is exposed to gluten. The exciting advances are twofold. First, we have now identified the "something" in the gluten that makes the immune system angry (that is, the target of the immune response). Secondly, we now understand why only some people's immune system gets angry with gluten—it is all about the genes we carry that control the immune response. How the Advances were Made Almost all individuals with celiac disease have one of two genes involved in the immune response, HLA-DQ2 (90%) or HLA-DQ8 (5%). In the general population only 30% have one of these genes, let's call them A and B. These genes are also very common in early onset diabetes and thyroid disease (both quite commonly associated with celiac disease). A and B have the task of latching on to chunks of proteins (peptides) and carrying them to certain cells in the immune system called T cells. In celiac disease, we know that gluten peptides are indeed taken ("presented") to T cells via A and B. Gluten peptides attached to A and B then activate a proportion of the T cells present in the gut and cause the flattening of the intestinal villi known as villous atrophy— the pathologist's hallmark for diagnosing the disease. Ever since it was shown that gluten causes celiac disease, the challenge faced by researchers was to prove whether there are many, a few, or just one component of gluten that is "toxic"—that is capable of causing this damage. Most researchers thought that a wide range of components of gluten (peptides) were involved in causing celiac disease, and indeed a range of T cells reacting against various gluten peptides were found. This would have meant that the idea of a vaccine to abort this immune process to gluten (a process technically called "tolerance") was impractical. However, these early experiments with T cells were unable to show what really happened when gluten was exposed to the immune system in "real people" with celiac disease. Our work performed in Oxford, and to continue at The Royal Melbourne Hospital, Box Hill Hospital and Walter and Eliza Hall Institute in Melbourne, utilizes T cells from celiac subjects that have recently eaten gluten-containing bread. T cells induced by eating gluten could be measured in blood. To our surprise, these T cells initially targeted only one small component of gluten (a small peptide) in the most toxic fraction of wheat gluten (alpha-gliadin). Whether different peptides in the other components of wheat, rye and barley gluten are targets to which T cells react in patients with celiac disease is currently under investigation. How a Vaccine Might Work In animal diseases, the understanding of how T-cells respond is much further advanced than in humans. In fact, it has been possible to prevent and even treat animal diseases caused by T cells by "vaccinating" with T-cell target peptides. For example, nasal administration of peptide can prevent a mouse disease similar to multiple sclerosis. It "blocks" the subsequent immune response which is the hallmark of the disease. Why can't we do this in celiac disease? Celiac disease is the first human condition for which there is a clear understanding of the T-cell targets—a peptide in gluten. In work that is now planned in Melbourne, the possibility of a "vaccine" for celiac disease will be tested. The first stage of this project will begin in the next six months. But even if successful, it is still likely to be ten years or more before a "treatment" is ready for general use. These studies may provide celiac disease with its first alternative to a gluten free diet. Welcome back French pastries and crusty bread!

Celiac.com 06/02/2023 - When you're too tired to cook, and even too tired to make nachos, but you need a gluten-free "meal," this recipe will save you. This taco casserole is even more basic than our earlier version with ground beef. It's a simple marriage of chili, corn chips, and cheese are topped with lettuce, tomato and other favorites. You can use your favorite gluten-free canned chili, as desired. Add your favorite salsa, or change toppings as you like. Ingredients: 6 cups corn tortilla chips 2 cups canned gluten-free chili with beans 1 cup shredded Cheddar cheese 3 cups chopped green lettuce 2 Roma (plum) tomatoes, chopped ½ cup sliced black olives, drained and pitted ¾ cup salsa ¼ cup sour cream dash of gluten-free hot sauce, such as Tapatío or Crystal, as desired pickled jalapeños, sliced, as desired Directions: Heat the oven to 350F (175C). Place chips in the bottom of a 9x9-inch baking dish. Pour chili straight from the can over chips. Sprinkle shredded cheese over top. Bake for 20 to 25 minutes in the heated oven, until chili is bubbling and cheese is melted. Remove from oven and allow to cool slightly. Top with lettuce, tomato, sour cream, and salsa in the pan, or after serving, as desired. Note: To double this recipe, just use a 9x13-inch baking dish.

Celiac.com 06/01/2023 - The rising popularity of gluten-free diets has captured public attention in recent years. With claims of weight loss, improved digestion, and increased energy, many individuals have jumped on the gluten-free bandwagon. However, it's important to base dietary decisions on scientific evidence, rather than mere trends. To shed some scientific light on the subject, a team of researchers conducted a controlled study to investigate the effects of gluten intake on body weight, body composition, resting energy expenditure, and the changes in nutrient intake caused by gluten-free diets. Study on Effects of Gluten Intake The research team included Hirla Karen Fialho Henriques, Luana Moreira Fonseca, Karine Silva de Andrade, Nitin Shivappa, James R. Hébert, Adaliene Versiani Matos Ferreira & Jacqueline Isaura Alvarez Leite. They are variously affiliated with the Department of Biochemistry and Immunology - ICB, Federal University of Minas Gerais, Belo Horizonte, Brazil; the Department of Nutrition, School of Nursing, Federal University of Minas Gerais, Belo Horizonte, Brazil; the Department of Biochemistry and Immunology - ICB, Federal University of Minas Gerais, Belo Horizonte, Brazil; and the Cancer Prevention and Control Program, University of South Carolina, Columbia, South Carolina, USA. Their study enrolled twenty-three women, who adhered to a gluten-free diet for a duration of six weeks. During this period, the participants were provided with muffins containing either 20 grams of gluten isolate (known as the gluten period) or gluten-free muffins (the gluten-free period) in a crossover, single-blind, non-randomized trial. The researchers assessed the subjects' habitual diet, including gastrointestinal symptoms, food frequency questionnaires, body composition, resting energy expenditure, and recorded daily food intake for the entire six-week duration. The Findings - Increase in Fat and Sodium Intake Surprisingly, the data showed that body weight, body composition, gastrointestinal symptoms, and resting energy expenditure remained similar during both the gluten and gluten-free periods. These results indicate that consuming up to 20 grams of gluten per day does not affect body weight or composition in healthy women without caloric restriction, at least over a relatively short period of three weeks. However, the team saw some concerning changes when the nutrient composition of the gluten-free period was compared to the participants' habitual diet. The gluten-free diet led to an increase in fat and sodium intake, while reducing the intake of fiber, as well as vitamins B1, B6, B12, and folate. This imbalance in nutrient intake resulted in an elevated dietary inflammatory index, indicating a higher inflammatory potential associated with gluten-free diets. These findings highlight the importance of considering the overall nutritional quality of a diet, rather than focusing solely on the absence of gluten. While a gluten-free diet may be necessary for individuals with specific medical conditions, such as celiac disease, the results suggest that adopting a gluten-free diet without medical necessity may have adverse effects on nutrient intake and potentially contribute to inflammation. The study offers some potentially valuable insights into the impact of gluten intake and gluten-free diets on health, especially with regards to nutrient intake, but it's important to note that it has certain limitations. The small sample size and the short duration of the trial invite further research with larger populations and longer intervention periods, to validate and expand upon these findings. Additionally, the study focused solely on healthy women, so the results may not be generalizable to other populations, or those with specific health conditions. It's also important to note that following a gluten-free diet can lead to imbalances in nutrient intake, particularly a reduction in fiber and essential vitamins, and an increase in dietary inflammation potential, even in non-celiacs. As with any dietary decision, it's best to consult with a healthcare professional or registered dietitian to ensure a well-rounded and nutritionally adequate diet that suits individual needs. Read more in the J Am Nutr Assoc. 2022 Nov-Dec;41(8):771-779.

Celiac.com 05/31/2023 - We get a lot of questions from people looking for gluten-free food of one kind or another. Our articles on the Best Phở restaurants in Las Vegas, Los Angeles, and the San Francisco, have been very popular, and a number of readers have asked about where to get good phở in Phoenix. Phở, for those in the know, is the delicious broth-based soup, made from beef, oxtail or chicken, that is the national dish of Vietnam. We've done an article about how most types of phở are naturally gluten-free, as long as you remember to use only gluten-free condiments. Phở is almost always served with a variety of condiments, including bean sprouts, cilantro, Thai basil, mint sprigs, scallions, and saw-tooth leaves, bird's eye chilis, sliced jalapeño peppers, Sriracha (Rooster) Sauce, and lime wedges. Sriracha Rooster Sauce is gluten-free. Beware of hoisin sauce, and make extra sure it's gluten-free; if you're not sure, then avoid it. NOTE: Definitely avoid egg noodles in your phở, and it is worth asking when you order whether or not the egg noodles are cooked separately from the standard phở rice noodles. Gluten-free Phở in Phoenix There are so many good phở restaurants in the Phoenix, that it's hard to count them all, let alone list them here. If we missed a favorite phở spot of yours, or if you know of a good one that's not on our list, please share it in the comments below and we'll be sure to add it to our list. NOTE: Restaurants can change owners, employees, recipes, etc., without notice, so it's always important to call ahead or ask about the gluten-free status of anything you order, including their phở. If you're looking for great phở in Phoenix, here's a list of thirteen places to start: Rice Paper Vietnamese Restaurant Rice Paper Vietnamese Restaurant - 2241 N 7th St, Phoenix, AZ 85006 Pho Thanh Pho Thanh 1702 W Camelback Rd, Phoenix, AZ 85015 Pho Noodles Pho Noodles 8700 N 7th St, Phoenix, AZ 85020 Pho 43 Pho 43 - 2844 N 43rd Ave, Phoenix, AZ 85009 Pho King Kitchen Pho King Kitchen - 3141 E Indian School Rd, Phoenix, AZ 85016 Da Vang Restaurant Da Vang Restaurant - 4538 N 19th Ave, Phoenix, AZ 85015 Pho Leo Pho Leo - 1702 E Camelback Rd #106, Phoenix, AZ 85016 Pho Leo - 2045 E Broadway Rd #102, Tempe, AZ 85282 (also near Central Phoenix) Kai Hoan Kai Hoan - 1537 East Apache Boulevard, Tempe Pho Vietnam Pho Vietnam - 15440 N 7th St #6, Phoenix, AZ 85022 Pho 20 Pho 20 - 1517 E Northern Ave, Phoenix, AZ 85020 Pho DaLat Pho DaLat - 3202 E Greenway Rd #1289, Phoenix, AZ 85032 Pho 602 Pho 602 Vietnamese Restaurant - 2120 N 35th Ave, Phoenix, AZ 85009 Pho Viet Pho Viet Vietnamese Restaurant - 1941 E Camelback Rd, Phoenix, AZ 85016 Little Saigon Little Saigon - 7016 N 57th Ave, Glendale, AZ 85301

Celiac.com 05/30/2023 - If you're looking for a quick and easy way to have a fresh, tasty meal with minimal hassle, these honey mustard chicken thighs are quick, easy, and deliver perfect blend of sweet, tangy and salty. Ingredients ¼ cup Dijon gluten-free mustard ¼ cup grainy gluten-free mustard ½ cup honey 1 teaspoon gluten-free soy sauce or tamari 2 teaspoons chopped fresh tarragon 1 tablespoon finely grated ginger root 8 skinless, boneless chicken thighs, trimmed of excess fat Directions Heat the oven to 350 degrees F (175 degrees C). Combine Dijon mustard, grainy mustard, honey, soy sauce, tarragon, and ginger in a large bowl. Rinse chicken thighs under cold water and pat dry with paper towels. Add chicken thighs to the bowl and toss to coat. Transfer to a baking pan and spoon sauce over the thighs. Bake in the heated oven until chicken is no longer pink in the center and the juices run clear, about 45 minutes. An instant-read thermometer inserted into the center should read at least 165 degrees F (74 degrees C). Spoon cooked sauce from the pan over chicken thighs before serving. Serve with white rice and your favorite vegetables.

Celiac.com 05/29/2023 - Celiac disease is an autoimmune disorder triggered by gluten consumption. While genes and gluten play a significant role in the development of the disease, researchers have started to explore additional factors that contribute to its onset. One intriguing area of study is the gut microbiota, the vast community of microorganisms that reside in our digestive tract. Recent research has suggested that alterations in the gut microbiota may act as an additional risk factor for celiac disease. To shed light on this complex relationship, scientists have embarked on a journey to explore the biogeographic variation and functional pathways of the gut microbiota in individuals with celiac disease. One challenge researchers face is the variability in sampling sites within the digestive system. Celiac disease primarily affects the small intestine, specifically the duodenum. Therefore, understanding the microbiota along different sections of the duodenum and comparing it to fecal samples is crucial for interpreting the findings accurately and gaining mechanistic insight. Comprehensive Study Using 16S rRNA Gene Sequencing To tackle this issue, a team of scientists conducted a comprehensive study using 16S rRNA gene sequencing, a method that allows for the identification and characterization of microbial communities, and predicted gene function using advanced bioinformatics tools. The research team included Marco Constante; Josie Libertucci; Heather J. Galipeau; Jake C. Szamosi; Gaston Rueda; Pedro M. Miranda; Maria Ines Pinto-Sanchez; Carolyn M. Southward; Laura Rossi; Michelle E. Fontes; Fernando G. Chirdo; Michael G. Surette; Premysl Bercik; Alberto Caminero; and Elena F. Verdu. They are variously affiliated with the Department of Medicine, Farncombe Family Digestive Health Research Institute, McMaster University, Hamilton, Ontario, Canada; and the Departamento de Ciencias Biológicas, Facultad de Ciencias Exactas, Instituto de Estudios Inmunológicos y Fisiopatológicos, Universidad Nacional de La Plata-National Scientific and Technical Research Council, La Plata, Argentina. Their team collected duodenal biopsies from sections D1, D2, and D3, aspirates, and stool samples from individuals with active celiac disease, as well as healthy controls. They also assessed participants' celiac disease risk genotypes. To delve deeper into the functional impact of the microbiota, the team selected a subset of duodenal samples with similar celiac disease risk genotypes for further analysis, and used to colonize germ-free mice, enabling the study of gluten metabolism. Study Results - Certain Microbes Present in Celiacs The results of the study were intriguing. The composition and predicted function of the gut microbiota in celiac disease were found to be largely determined by the location within the intestine. In the duodenum, but not in stool samples, specific bacterial species, such as Escherichia coli (D1), Prevotella salivae (D2), and Neisseria (D3), were found to be more abundant in individuals with celiac disease compared to healthy controls. Furthermore, the researchers discovered alterations in bacterial protease and peptidase genes, indicating changes in gluten degradation pathways specific to celiac disease. Interestingly, impaired gluten degradation was observed only in mice colonized with microbiota from individuals with celiac disease, further highlighting the role of the microbiota in gluten metabolism. These findings suggest that celiac disease influences the microbial communities in distinct niches within the gut. The researchers also identified novel microbial proteolytic pathways involved in gluten detoxification, which were impaired in individuals with celiac disease but not in healthy controls carrying the celiac disease risk genotype DQ2. This suggests a potential association between these pathways and active inflammation in the duodenum. It is important to note that the study highlights the significance of sampling site as a confounding factor in microbiome research related to celiac disease. Understanding the nuances of the gut microbiota at different locations within the intestine is crucial for accurate interpretation and meaningful conclusions. Conclusions This groundbreaking research opens up new avenues for exploring the complex interplay between the gut microbiota and celiac disease. By identifying specific microbial species and functional pathways associated with the disease, scientists are gaining valuable insights into its mechanisms. Furthermore, these findings provide potential targets for future therapeutic interventions and diagnostic approaches, ultimately improving the lives of individuals living with celiac disease. As our understanding of the intricate relationship between the gut microbiota and celiac disease deepens, we move one step closer to understanding the parameters of the disease, and possibly to develop better approaches to treatment. Stay tuned for more on this and related stories. Read more at Gastroenterology

Celiac.com 05/27/2023 - Malignancy must be a concern for all of us with celiac disease. The association between increased mortality in celiac disease due to malignant disease has been known since 1962(1) . Subsequent studies have confirmed various types of malignancies occurring in celiac patients with the most frequent being lymphomas, which account for 51-72% of celiac disease-associated malignancy(2, 3) . Both small bowel lymphomas and adenocarcinoma, the most frequent celiac disease-associated malignancies, typically arise in the jejunum but also are found in the duodenum and ileum(2) . Other sites of carcinoma found in greater than expected numbers have been the mouth, pharnyx, lung, breast, and testes2, 3. Celiac disease-associated cancer is found in both child and adult celiacs(2). Enteropathy associated T-cell lymphoma (EATL) of the small bowel is the major lymphoma associated with celiac disease(2, 4). This type of non-Hodgkin lymphoma appears to be primarily associated with celiac disease and is known to increase in people with celiac disease who are 50-70 years of age(4) . There appears to be two forms of EATL, and one of them may originate during refractory celiac disease(2,4). Abnormalities in refractory celiac disease lymphocytes are similar to those of this form of EATL(3) . While the majority of patients with celiac disease have improved symptoms with a strict gluten-free diet, those with refractory celiac disease may be non-responsive because of complications due to the development of EATL(5). The Importance of a Gluten-Free Diet The exact rate of malignancy in celiac disease is unknown since much of the silent or asymptomatic form of the disease remains undiagnosed(5) . Also, the celiac disease status of patients with established lymphoma may never be determined, or may be missed at examination(2, 5). However, European studies have shown an increased mortality rate due to malignancies in celiac disease as high as two to nearly four times that of the non-celiac disease population(2) . Most deaths occurred in the first 3-4 years after diagnosis. Several studies have demonstrated the protective effect of a strict gluten-free diet against malignancy(2, 5) . There appears to be a clear correlation between increased cancer rates (comparing the celiac disease and non-celiac disease populations) and the amount of gluten ingestion. In one of the studies, the excess morbidity of patients on a strict gluten-free diet was only 1.2 compared to 10.7 in patients on a normal (gluten-containing) diet(5). After 5 years or more on a strict gluten-free diet, there appears to be no significant increase in the overall cancer risk compared to the non-celiac disease population. Furthermore, a strict gluten-free diet appears to specifically reduce EATL(6). The Importance of Early Diagnosis Conferring the protective effect of a gluten-free diet with early diagnosis is important in malignancies like lymphoma, which has a poor prognosis(5). The expected five-year survival of advanced small bowel lymphoma is 25-30%; that of intestinal T cell lymphoma is only about 25%7 . Furthermore, gastrointestinal lymphomas often are presented as high grade (i.e., more advanced) malignancy, and are often widespread(5,6). Unfortunately some cases of celiac disease are not diagnosed until presentation of lymphoma. T-cell lymphomas most often arouse the suspicion of undiagnosed celiac disease, but B-cell lymphomas exist in celiac disease as well(8). However, the diagnosis of lymphoma can be difficult to ascertain due to non-specific symptoms or symptoms similar to celiac disease(5,7). Presenting features of gastrointestinal lymphoma are similar to that of uncomplicated celiac disease; "Unexplained deterioration, abdominal pain, weight loss, severe muscle weakness, lymphadenopathy (disorder of the lymph nodes), abdominal mass and pyrexia (fever) should arouse suspicion of lymphoma."(5). Some patients may also have intestinal obstruction, perforation, or bleeding. Furthermore, patients with small bowel tumors (including adenocarcinoma) may present with abdominal pain, anemia, bleeding, weight loss, or obstruction(2, 7). Therefore, Ruskone-Fourmestraux and Rambaud suggest that "the diagnosis of coeliac disease must be made as early as possible and the diet commenced, even in asymptomatic subjects, after detailed and complete patient information."(6). Once diagnosed, therapy for lymphoma or adenocarcinoma may include surgery (such as resection of a portion of the intestine), chemotherapy, and/or radiotherapy(5). Regarding cancer, there is both good and bad news for those of us with celiac disease. While we have an increased risk of cancer, the risk is still very small for most celiacs. The symptoms of gastrointestinal cancers, and especially small bowel cancers, are similar to those of celiac disease itself. It appears, however, that with the exception of refractory celiac disease, a strict gluten-free diet over time may remove the increased chance of cancer due to celiac disease. Undeniably, our vigilant adherence and attitude toward the gluten-free lifestyle must be a mainstay and we must be up to the challenge. References: Gough KR, Read AE, Naish JM. 1962. Intestinal reticulosis as a complication of idiopathic steatorrhea. Gut 3: 232-39. Green PHR, and Jabri B. 2002. Celiac disease and other precursors to small-bowel malignancy. Gastroenterol Clin N Am 31:625-39. Seraphin P, and Mobarhan S. 2002. Mortality in patients with celiac disease. Nutrition Rev 60: 116-8. Catassi C, et al. 2002. Risk of non-Hodgkin lymphoma in celiac disease. JAMA 287:1413-9. Holmes GKT. 2002. Coeliac disease and malignancy. Digest Liver Dis 34:229-37. Ruskone-Fourmestraux A, and Rambaud JC. 2001. Gastrointestinal lymphoma: prevention and treatment of early lesions. Best Practice & Res Clin Gastroenterol 15:337-54. Gill SS, Heuman DM, and Mihas AA. 2001. Small intestinal neoplasm. J Clin Gastroenterol 33: 267-82. Freeman H, Lemoyne M, and Pare P. 2002. Coeliac disease. Best Pract & Res 16:37-49.

Celiac.com 05/26/2023 - Three cheers for Girl Scout Troop 3656 in Seaford, New York! The troop has successfully campaigned for gluten-free options to be added to their school district's menu. The troop's initiative began when troop member Giuliana Caratelli, who has celiac disease, was unable to eat school lunches, due to her immune reaction to gluten. Determined to help their fellow scout, Troop 3656 created up a plan to promote gluten-free meals for their Bronze Award project, the first in a series of medals that move up the Girl Scout rankings. The troop presented their idea to the principal and assistant principal of Seaford Manor School, and began working with the district’s food service director, Betty Ann Fiola, on a plan to add gluten-free options to the lunch menu. On March 9, the troop presented their project to the district Board of Education, where Giuliana spoke about celiac disease and how some brands have started to make gluten-free versions of her favorite foods like pizza, cake, cookies, and bagels. Her fellow scouts then took turns explaining their project to the board and why they wanted to add gluten-free options to the district menu. Thanks to the efforts of Troop 3656, gluten-free options were added to the lunch menu on February 1, including Giuliana's favorites, gluten-free pizza and gluten-free bagels. The girls taste-tested standard dishes containing gluten and their gluten-free counterparts, and some of them even preferred the gluten-free food. “It was amazing, and it brought me to tears knowing they wanted to do this for her,” said Kristina Caratelli, Giuliana's mother. “It was pretty cool, and it’s brought an awareness about gluten allergies.” The Scouts brought colorful posters to their presentation to the school board to share the news of their success, and the board congratulated the girls on their accomplishment. Posters were sent to other district schools, notifying them of the modified menu. “What a great project,” said Superintendent Dr. Adele Pecora. “There are so many people with different food allergies and food needs. It’s nice to not make lunch every single day.” Giuliana will be graduating from the elementary school at the end of the school year, and will attend Seaford Middle School. The efforts of Troop 3656 will have a lasting impact on the Seaford School District, by making gluten-free options available for students with celiac disease, and raising awareness about food allergies. Read more at liherald.com

Celiac.com 05/23/2023 - In recent years, there has been a rapid decline in the cases of Helicobacter pylori gastritis, particularly in developed countries. However, amidst this decline, an intriguing phenomenon has emerged: Helicobacter pylori-negative chronic gastritis. This condition is marked by chronic inflammation of the stomach lining in the absence of the notorious Helicobacter pylori bacterium, and has gained increasing recognition among experts as an important histological finding. Despite the growing awareness of this condition, the rates and clinical significance of Helicobacter pylori-negative chronic gastritis in children remain poorly studied. To shed more light on this condition, a team of researchers set out to learn more about this peculiar type of gastritis in the younger population. The research team included Anni Virkkula, Laura Kivela, Pauliina Hiltunen, Antti Sotka, Heini Huhtala, Kalle Kurppa, and Marleena Repo. They are variously affiliated with theTampere Centre for Child, Adolescent and Maternal Health Research, Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland; the Celiac Disease Research Centre, Faculty of Medicine and Health Technology, Tampere university, Tampere; the University of Helsinki and Helsinki University Hospital, Children's Hospital, and Paediatric Research Center, Helsinki; the Department of Pediatrics, Tampere University Hospital, Tampere; the Department of Pediatrics, South Karelia Central Hospital, Lappeen-ranta; the Faculty of Social Sciences, Tampere University, Tampere; the University Consortium of Seinajoki and Seinajoki Central Hospital, Seinajoki, Finland; and the Department of Pediatrics, Central Finland Central Hospital, Jyvaskyla, Finland. The team began their investigation by gathering data from 1,178 consecutive children who underwent diagnostic esophagogastroduodenoscopy (EGD). By comparing the baseline characteristics and long-term outcomes of children with active and inactive Helicobacter pylori-negative chronic gastritis, as well as those with normal gastric histology, they sought to discern patterns and draw meaningful conclusions. They then tracked follow-up data for up to 13 years. What the team discovered was nothing short of remarkable. Helicobacter pylori-negative chronic gastritis, it turns out, is a rather common finding in children undergoing EGD. Intriguingly, the active type of this form of gastritis was found to be particularly associated with Crohn's disease, an inflammatory bowel condition, while the inactive form exhibited links to celiac disease. In addition to shedding light on these associations, the study uncovered another fascinating revelation—Helicobacter pylori-negative chronic gastritis can serve as a predictor of gastrointestinal diagnoses, most notably inflammatory bowel disease and celiac disease. This finding carries significant implications for early detection and subsequent management of these conditions. Furthermore, the researchers examined the long-term prognosis of patients diagnosed with Helicobacter pylori-negative chronic gastritis who did not receive an initial diagnosis. Encouragingly, they found that the prognosis for these individuals is generally favorable. With valuable insights into prevalence, clinical significance, and potential implications for gastrointestinal health, this study marks an important evolution in our understanding of Helicobacter pylori-negative chronic gastritis. Read more in the Journal of Pediatric Gastroenterology and Nutrition 74(5):p 949-955, May 2022

Celiac.com 05/22/2023 - Gluten-free products have become more than just a lifeline for individuals allergic to gluten. They have emerged as a popular choice for a broader spectrum of consumers seeking specific lifestyle changes. One company that has witnessed this shift firsthand is Abe's Vegan Muffins, based in West Nyack, N.Y. Their gluten-free offerings have become intertwined with the plant-based trend and the paleo lifestyle market, reflecting the evolving demands of health-conscious individuals. As a result, Abe's Vegan Muffins anticipates significant growth in the gluten-free sector, potentially necessitating an expansion of their gluten-free product line. Known for its vegan treats, Abe's Vegan Muffins has successfully incorporated gluten-free options into its repertoire. Their gluten-free coffee cake and double chocolate muffins, made with brown rice flour, have emerged as best sellers. Kalyna DeAngelo, the social media and marketing coordinator at Abe's Vegan Muffins, acknowledges the impact of health and wellness on the bakery industry. For many people, gluten has been linked to various health conditions, prompting an increasing number of individuals to make the switch to gluten-free alternatives. What was once an exception has become the norm. As bakers delve deeper into the gluten-free realm, a wider array of exceptional gluten-free products is readily available. Dawn Foods, headquartered in Jackson, Mich., is another company witnessing the transformation of gluten-free from a passing fad to an enduring dietary preference. Consumers today seek a diverse range of lifestyle choices and diets, according to Melissa Trimmer, a certified executive pastry chef, culinary innovation operations and menu consultant at Dawn Foods Global. Kalyna and Melissa look for products in these categories to cater to a broader range of dietary needs without compromising on taste or texture. Gluten-free baked goods and mixes must now excel in flavor and performance, matching the quality of their non-gluten-free counterparts. Dawn Foods has stepped up to the challenge by offering a gluten-free line that includes crème cakes and high-ratio cakes in chocolate and vanilla. These products can be seamlessly substituted into various cake recipes, ensuring gluten-free options that are not just "good for gluten-free," but also irresistibly delicious and high quality. Gluten-free White and Dark Devil's Food cake bases are among Dawn Foods' top-selling gluten-free supermarket products, highlighting the company's success in the cake category. Moreover, Dawn Foods provides an extensive range of gluten-free selections worldwide, encompassing cake, crème cake, brownie, cookie, and cake bases. As the correlation between gluten-free diets and other health trends becomes increasingly apparent, companies like Abe's Vegan Muffins and Dawn Foods are at the forefront of meeting evolving consumer demands. The gluten-free landscape is no longer a niche market, but a thriving sector offering tantalizing options that cater to a variety of dietary preferences, without compromising on taste, texture, or quality. With the ongoing advancement in product formulation, and a deeper understanding of gluten-free ingredients, the future looks to hold some exciting possibilities for the gluten-free baking. Stay tuned for more about developments in gluten-free food, and related stories. Read more at Supermarketperimeter.com

Celiac.com 05/20/2023 - This is the final chapter of Dr. Jean Duane's eBook, and we would like to thank Dr. Jean Duane for publishing Gluten-Centric Culture on Celiac.com. Gluten Centricity We live in a gluten-centric culture where severe dietary restrictions are associated with diminished social activities. Feeling excluded and observing that gluten was a punch line in nearly every form of media encountered, I wanted to research associations between given “truths” to illustrate how gluten centricity affects the lived experiences of those with celiac disease and/or food sensitivities (Chapter 1). I felt there was a lot more to the lifestyle than just figuring out “what’s for dinner!” Living the gluten-free lifestyle seemed to negatively affect nearly every social engagement I attended. I felt isolated when not able to participate in simple acts of commensality with family and friends. Considering current numbers of Americans with dietary restrictions, I determined that I could not be the only one feeling this way. In the process of writing this book, I read hundreds of studies focused on people living with food allergies (Duane, 2019). Most studies centered on children, few on adults, and fewer on the social impacts. This led me to developing a nation-wide study concentrating on food-sensitive adults living with other adults to attempt to fill the gap in the literature. Those of us with gluten sensitivities sometimes find ourselves at odds in social rituals, from taking communion in church to sharing the same foods around the dinner table (Chapter 3). We’re even omitted from the USDA food guidelines (Chapter 2). Our disease often isn’t taken as seriously as other diseases that revolve around eating a restrictive diet such as heart disease or diabetes. Furthermore, women report not being “heard” by doctors, extending the time until diagnosed (Chapter 4). We are often met with suspicion, accused of being faddish, or exaggerating our needs. We are subjected to a host of attitudes that reinforce this behavior and that cause us to feel like we are taking risks in our efforts to gracefully navigate life. It’s Actually Common Awareness of gluten sensitivity is growing. As we age, many reach the threshold of no-tolerance and experience an onset of chronic physical conditions. Some never associate their maladies with their diet, but those who do usually make adjustments. Gluten sensitivity spans all ages, classes, and races (Fasano & Catassi, 2012), making it unclear why American doctors do not lead with celiac disease tests, and why it takes patients an average of eleven years to get a diagnosis (Green & Jabri, 2003). Perhaps it is because celiac disease did not appear in the 1994 reports from either the U.S. Department of Health and Human Services or the National Institute of Diabetes and Digestive and Kidney Diseases (Fasano & Flaherty, 2014). Though it was known in Europe since 1941 (van Berge-Henegouwen & Mulder, 1993), until the early 2000s, U.S. doctors seemed to think that celiac disease bypassed North America (Fasano & Flaherty, 2014). Commenting on its growing ubiquity, Grain Brain authors declare, “Gluten is this generation’s tobacco” (Perlmutter & Loberg, 2013, p. 64) and one of the “greatest and most under-recognized health threats to humanity” (p. 32). Awareness by medical professionals provides hope to all people whose immune systems treat gluten as a “component of a dangerous bacterium or bacteria…toxic to humankind” (Fasano & Flaherty, 2014, Loc. 638). Certainly, the statistics are compelling; however, gluten-intolerance is still under-diagnosed. Let’s face it. It’s a hassle to be properly diagnosed and can be a burden to live with. But diagnosis doesn’t have to be a social “death sentence.” This book is an attempt to help with the social aspects of living with food sensitivities. Understanding is the first step. Previous chapters identify the cultural constraints that make us feel isolated and subjugated from mainstream culture (Chapter 1 and 2). Next, we examine “vexing venues” (Chapter 5) and ways we can take action to move from feeling excluded to being included. We see how we go through the Big (homeostatic) Shift, enabling us to have confidence in our lifestyle choices (Chapter 6 and 7). We now have empowering language so that we can conduct life gracefully (Chapter 8). Finally, we expect respect and compassion from others (Chapter 9). Another way to be empowered is to be aware of the laws in our country, such as understanding our rights under the American Disabilities Act, the subject of this chapter. Laws (are supposed to) Mandate Behavior Though this book does not dwell on the legal aspects of celiac disease, it is paramount to understand our rights to force compliance and to unite to expand the law’s definition. Visible disabilities such as impaired mobility or vision are covered under the American Disabilities Act, requiring accessibility in public pathways. Invisible disabilities such as diabetes, multiple sclerosis, lupus, and cystic fibrosis (ADA, 1990) carry the expectation that they will also be accommodated. Similarly, celiac disease and food allergies were added to the American Disabilities Act in 2012 with caveats when college students who felt their needs were not properly addressed, took action. Students with celiac disease and food sensitivities at Lesley University felt excluded and discriminated against because they were not able to fully enjoy the food service accommodations without fear of being cross-contaminated when purchasing the school’s mandatory meal plan. An ensuing lawsuit between Lesley University and the Justice Department determined that Lesley must provide gluten-free foods in its dining halls for students who have celiac disease or food allergies (Justice.gov). Further, celiac disease was deemed a disability under the American Disabilities Act (DOJ, 2012). The settlement also required Lesley to develop individualized meal plans, provide safe zones to prevent cross-contamination, disclose ingredients of foods, and pay $50,000 compensatory damages “to previously identified students who have celiac disease or other food allergies” (DOJ, 2012). Students attending this university now experience inclusiveness because several gluten-free selections are available in dining halls. The meals are prepared in a “clean” allergy-free space in the kitchen. Since the 2012 lawsuit, Lesley University has become a model of celiac disease inclusivity, providing a kitchen free of allergens, offering the foods requested by students, listening to students’ needs, training staff on safe handling, and cross-contamination practices (Schilling, 2015). This landmark case influenced the outcome of a similar suit against Rider University in 2019 where students with similar complaints as those attending Lesley were rewarded with inclusive accommodations on campus (DOJ, 2019). ADA and the School Venue The American Disabilities Act does not detail specific residency standards, however Title II states that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity (ADA, 2012).” This means that if a student attends a school that receives federal funding (and most do), they are entitled to the rights stated in the American Disabilities Act. But because it is vaguely written, some institutions offer gluten-free dorm rooms, while others require celiac disease students to live in an apartment off campus. Sarah (#31) describes how the school’s staff met with her to figure out a solution (Chapter 3). Though intended to protect her from cross-contamination, the ensuing plan caused her to experience a lonely first year in the school venue because she was forbidden from entering dining halls and other food-events such as college pizza parties. She suffered extreme isolation that prevented her from bonding with her fellow students. When universities require students living on campus to purchase a meal plan, it can create a burden for students trying to eat safely. For example, student and celiac disease sufferer Hannah Smith ( Smith v. University of Maryland, 2020) was forced to purchase a meal plan and alleges that her university served her gluten-containing food three times, despite asking whether it was gluten free. On one occasion, a campus staff member “berated Smith and served her blackened toast for making a complaint” (AP, 2/24/20). On another occasion, Smith was assured that a popular breakfast cereal containing wheat was gluten free ( Smith v. University of Maryland, 2020) and then for lunch, served her soup that contained barley. The university refused to refund her for the cost of her meal plan when she moved off campus the next year, so she sued. In the heartbreaking complaint prepared by Smith’s lawyer, it says the honor student after consuming the food, “vomited so intensely that blood vessels throughout her face burst. She experienced brain fog, difficulty walking, uncontrollable vomiting, and rib pain as a result of projectile vomiting. The impact of this incident lasted for weeks.” Over the course of the semester, she developed dermatitis herpetiformis. Further it says, because of these incidents, “she could not maintain her grades due to constant illness” caused from becoming sickened by the gluten-containing foods. Finally, it summarized, “Smith suffered physical, emotional, and financial harm as a result of the Defendant’s conduct” ( Smith v. University of Maryland, 2020). Ultimately, the suit was dropped. The position of the school in this situation enacted the I-know-best, gluten-doubt, and the able-body biases , despite Smith’s father’s attempt to educate and ensure his daughter had safe fare. The kitchen staff did not ever seem to embrace Smith’s serious requirements with their actions of repeatedly exposing her to gluten (while assuring her the foods were safe). This lawsuit very disturbing because the repeated efforts of Smith’s father did not yield success. It implies that we are truly at the mercy of the willingness of those in charge when we are in any kind of institution or situation where we have to rely on others to feed us. Flexible guidelines in the American Disabilities Act allow colleges to work with what they have in order to accommodate student’s needs. Sometimes arrangements instill inclusive behavior, and other times they result in unintended consequences such as isolating a student, or dependence on non-compliant kitchen staff. It comes down to training everyone involved and being dedicated to working together to accomplish the goal of providing a safe meal to the student. When the Lesley case mandated that celiac disease and food allergies were included in the American Disabilities Act, it was hoped that there would be a ripple effect to make it safer for our community to dine in restaurants. Though it has improved some situations, the American Disabilities Act contains exceptions for restaurants. American Disabilities Act and Restaurants Nearly every participant commented on how they were afraid to eat out because of inconsistencies in compliance. Not feeling safe to eat restaurant food was by far the reason many felt isolated and excluded from social gatherings because of their disease. Chapter 9 details strategies for restaurant eating. Here, let’s look at the laws about celiac disease as a disability. The American Disabilities Act falls short when it comes to restaurants, because if a patron’s request “alters the nature of the goods” the restaurant does not need to comply (ADA, 2012). This means the amended American Disabilities Act does not apply in the same way to restaurants as it does to institutions. Assuming you are properly diagnosed, you can demand a gluten-free meal at federally-funded institution but you have fewer legal rights in a restaurant. Restaurants can answer questions about ingredients and omit or substitute according to a patron’s request but they do not need to provide “different foods to meet particular dietary needs” (ADA, 2012). As we have heard from participants, this causes every restaurant experience to be unique, depending on the commitment level and knowledge of the staff. If restaurants do not want to “alter the nature of their goods” to comply with gluten free guidelines, they can refuse to serve those with celiac disease and food sensitivities (U.S. Fed News, 2012). Consequently, this continues to make restaurants a “vexing venue” because they are still not required to offer safe gluten free meals. Some restaurants have conscientious staff, but others do not. Furthermore, a restaurant that is compliant one day may not be the next because standards vary by state, by restaurant, and by servers and chefs. The Gluten Intolerance Group of North America’s Gluten-Free Food Service program provides food service providers with guidelines to be designated as a Gluten Free Safe Spot (gffs.org). This kind of training throughout the restaurant industry would ensure consistency. This website also provides information on restaurants, schools, hospitals and senior facilities who have attained the Gluten Free Safe Spot designation. Trusting the server and the restaurant to comply is often an act of faith. Just as when we travel to another country, we represent all Americans, when we ask for a special meal in a restaurant, we are “representing” all of those who have celiac disease or food sensitivities. When restaurants get it “right,” participants describe how they praise the staff, often calling over the manager to thank them for accommodating our needs. Positively reinforcing good behavior might help the next person who asks for a special meal. But sometimes that backfires. Liza (#68) reported an incident when she asked the waiter for a gluten free, dairy free selection and the waiter said, “Not another special need! You should have heard how the lady at that table over there ordered. She even had a card with all of her requirements on it for me to give to the chef.” The waiter did not provide Liza with a meal she felt safe eating. She did not feel he listened to her needs because the salmon she ordered cooked “dry” came with some kind of brown sauce she was afraid to eat. Participants voiced they are careful not to appear too “demanding.” It is a slippery slope because we have to trust others to believe our needs and if we are “glutened,” we pay the price of being ill. Those with celiac disease who have been sickened from eating in restaurants previously may be less apt to trust establishments that promise gluten free selections. This was the case involving a boy who had celiac disease and who brought his own food on a school field trip to Colonial Williamsburg. He and his 60 classmates were planning to be entertained in the18th century style in a restaurant (Marimow, 2019). When it came time for the meal, the boy was told that the museum restaurant had a “no outside food” policy and said the he would need to eat the food prepared there. The father explained that on other occasions, the boy had been “glutened” in restaurants, which is why he brought his own food. The restaurant stood its ground and the boy and his father ate outside in the rain, away from his classmates. The father sued for discrimination under the American Disabilities Act (Hackman, 2017). The restaurant claimed that they offered the boy a gluten free meal and did not require him to leave, and that consuming “outside food” in their restaurant violated health regulations (AP Press, 5/31/19). A court found that the restaurant had previously made exceptions to the “no outside” rule, and because the child needed a safe meal, bringing his own food was considered “reasonable.” Further, his request “did not alter the nature of the restaurant’s services” (Boyns, 2020). A federal appeals court found in favor of the lad. State health departments often do not allow food brought from home by patrons to be heated up in restaurant kitchens because the restaurant assumes liability if they handle outside food. If you elect to bring your own food to a restaurant, ensure that it does not require special handling and refrain from asking the restaurant staff to handle it. Consider carrying a letter from your doctor stating you require a special diet (Chapter 9). Restaurant policies and state policies on outside food vary. It is a tricky business. While we want to show gratitude for restaurants that are avoiding able-bodied bias by offering gluten free and food sensitive selections, we are also relying on individuals who may not fully understand the plethora of ingredients that indicate gluten. For example, Todd Serlin became sickened from consuming French onion soup at a restaurant at the Grand Canyon in 2019 after being assured several times that it was gluten free (AP Press, 4/2/19) illustrating the I-know-best attitude on the part of the restaurant personnel. Another lawsuit claimed that those with celiac disease experience discrimination when a restaurant charged $1 more for gluten free provisions, and didn’t charge for peanut free or vegan requests (Hackman, 2017). We appreciate restaurant’s efforts, but often when we disclose we have celiac disease, we are sometimes warned not to consume the gluten free foods. For example, several pizza chains offer gluten free crust options, but issue the caveat that even though they take precautions, foods may be cross-contaminated because they do not have a strictly gluten free environment. It comes down to liability. I used to frequent a Mexican restaurant where I could get a salad and a piece of grilled fish. One day, when I ordered my normal fare, the manager came back to my table and presented me with a laminated disclaimer. It said, “We are not liable for your food allergies. If you consent to eat the foods we prepare for you, and you become sickened as a result, we relinquish all liability.” What a way to start a meal! First of all, I was the only one at the table that got the laminated disclaimer, so I felt embarrassed as my companions inquired about it. Also, I really didn’t want to risk eating anything there after they presented me with “legalese” to let them off the hook. I want to be reassured, not disclaimed. When my food came, I didn’t enjoy it. It was my last meal there. Can they just disclaim their liability like that? If the restaurant in the Grand Canyon present Serlin with a similar card, would he have had a claim against them when sickened? According to Craig, restaurants assume liability when consenting to provide a gluten free meal, causing some to take out insurance policies in case of slip-ups (Craig, 2012). Does the disclaimer create a loophole in the law? Restaurants continue to be a challenge for us because there are no standardized guidelines mandated by the government for them to follow. Until the American Disabilities Act removes the caveats, every restaurant outing poses risk for those of us with celiac disease or food sensitivities. Jean’s Story – A Restaurant in Dallas Dear Reader, I wish you could have been there with me to share this delightful meal! About ten years after being diagnosed and completely gluten free, the Lone Star Gluten Intolerance Group of North America asked me to speak at one of their meetings. They were so nice! Kay welcomed me into her home with open arms. I spent the night in her home and the next day she drove me to the venue where the group was meeting to hear my speech. After the speech, several group members took me to eat in a gluten-free restaurant. Everything on the menu was safe to eat. I don’t think that restaurant even used dairy products. I looked at the menu and instead of figuring out how I could get a salad with nothing on it to pick at, I looked at all of the selections with the knowledge that I could actually indulge in the meatloaf with mashed potatoes, the chicken fried steak with okra, or the Rueben sandwich. It was positively heavenly! It reminded me of the early part of my life when eating out was a daily activity. Back then my coworkers and I would plan our elaborate lunch schedule around various restaurant offerings. But after being diagnosed, I only went to restaurants to be sociable, often not even eating the salad, but rather cutting it up and pushing it around my plate. But at this glorious restaurant, I ordered fish and chips with coleslaw and gorged myself on that heavenly food. Oh, the crunchy batter on that light, white fish. Mmmm the crisp French fries and the amazing taste combinations when paired with the catsup and apple cider vinegar. The others around the table were indulging in other oral delights. They explained that this special restaurant was one place where they all felt safe and they ate there every Saturday at lunch. The cleaned plates were cleared and the waitress asked us what we would like for dessert. Dessert! Wow! I only ever have berries nowadays. What a treat! I ordered a lovely lemon cake with lemony icing. It was one of the most wonderful meals I can remember eating. I want to live in a world where I can order from menus like that again! Thank you to the Lone Star Gluten Intolerance Group for giving me such a fond memory, and especially thank you to that restaurant. (Sadly, that fine restaurant is no longer in business.) Let’s work together, so we can all eat in restaurants without worry again! American Disabilities Act and Institutions The inclusion of celiac disease in the American Disabilities Act as a result of the 2012 lawsuit requires institutions like colleges, hospitals, prisons, and universities to comply when meals are prepared “in house.” For institutions, the ruling mandates that those with food allergies, non-celiac gluten sensitivity, and celiac disease can provide grocery lists to food providers who must be trained on safe practices. It mandates that allergen-free meals can be pre-ordered; and that those with celiac disease or food sensitivities will be provided a designated area to eat and to store their food. However, private institutions such as elder care facilities are not required to comply (Chapter 2). Title III of the American Disabilities Act does not allow employers to discriminate against, or not hire, a person with celiac disease if they are otherwise qualified. It requires that employers who offer meals to employees provide gluten free alternatives for those with celiac disease or food sensitivities. It states that emergency services such as safe shelters or institutions such as jails must offer gluten free meals, and it allows a person with celiac disease to bring foods into places serving foods that are not safe. There are several delivery services that cater to various food allergies (Healthline, 2023). The American Disabilities Act does not require hospitals to provide gluten free pharmaceuticals. I had the misfortunate of being involved in a hit-and-run on the highway. I was taken to the hospital in an ambulance and was in considerable pain. My sternum was cracked. The staff at the hospital could not give me pain medication because they could not guarantee me that it was gluten free. It took me an entire miserable day to track down safe medicine (using the Internet and coordinating with my doctor). This was a terrible experience, and one that simply has to change. The celiac.org organization works to present legislation for things like this. The change to the American Disabilities Act to include celiac disease is a positive move, but it needs to be broadened to include all public places, restaurants, pharmaceuticals, etc. modeling how those who are physically disabled are accommodated. Here are some proposed amendments to the American Disabilities Act we could suggest to our Congress representative, which would go a long way toward expanding our accessibility: Restaurants would be required to list the ingredients of every dish, either on the menu, or by request. (That would help those with food sensitivities to determine for themselves what is safe, rather than relying on everyone they ask to know all of the many ingredient names that can mean gluten, dairy, or other allergens.) Restaurants would be required to follow the safe-practices guidelines provided by an organization such as the Gluten Intolerance Group of North America (gluten.org / gffs.org) to eliminate cross-contamination, and to properly train restaurant staff. Furthermore, they would be required to publicly post their safe-practices certification in a place visible to patrons. Restaurants would be required to offer several pre-cooked, frozen meal options prepared in an offsite, gluten free certified “safe” kitchen that would just require heating (in the packaging to prevent cross-contamination). That pre-cooked meal wouldn’t require any alterations or substitutions in the regular fare a restaurant offers, but it would ensure that everyone with celiac disease or food sensitivities would have something they knew they could eat. (This may not be optimal, but at least those with celiac disease would be assured of something to order when they go out.) Pharmaceutical companies would be required to prominently disclose all ingredients on the outside label (in plain English, not in medical terminology) and which known allergens the product contains. Ingredients would be specified in each lot, so rather than saying “starch,” label the exact starch used (corn, potato, wheat, rice, etc.). Food manufacturers would write ingredient labels in plain English. For example, if the ingredient is “maltodextrin,” the label would be required to say whether it was derived from corn, rice, potato starch, or wheat. American Disabilities Act and Other Disabilities The National Institutes of Health estimate that there are approximately 3.2 million visually impaired Americans (NIH, 2018). Americans over the age of 15 in a wheelchair number 3.6 million (U.S. Census, 2012). The American gluten-sensitive population sums 20 million conservatively (Fasano and Catassi, 2012; Fasano et al., 2015), including three million people with celiac disease (Fasano et al., 2003) and three million with non-celiac gluten sensitivity (Uhde et al., 2016). In fact, those suffering with gluten sensitivities outnumber individuals who are visually impaired or in a wheelchair combined; yet, the model used to accommodate the visually and mobility impaired has not been extended to those of us with celiac disease or food sensitivities. If laws were changed to require accessibility to accommodate the needs of those with gluten sensitivities such as amending the American Disabilities Act; similar to the “bubbles” installed at crosswalks across the country for the vision impaired, swimming pool lifts, and ramps in public buildings for individuals in wheelchairs, those with celiac disease would be able to safely navigate aspects of life. Taking Action A peaceful organized effort may bring attention to our need to be accommodated. This starts with unification, via gluten-oriented organizations, social media, or community activities to gain nation-wide awareness. It requires that we use similar language such as the ideologies and cultural constraints defined in this book, uniformity in how we communicate our requests in public places, and advocating education, respect, and compassion in our daily lives. Just as those in wheelchairs can cross streets and access public buildings, it is my hope that this work can influence positive change in the celiac community. Followers of the gluten free diet band together, perpetuating their beliefs that they can cultivate a healthy body and rid themselves from disease through diet. Organizations form to educate and change laws. United, devoted dietary followers create massive awareness. In the same way that other peaceful demonstrations have brought attention to the oppression of others, perhaps a campaign that develops the notion being aware of #glutencentric introduced in the last chapter would bring light to our plight, and possibly affect positive changes. We now have a hashtag to “call out” those in the media who ridicule our disease. Just as we may incorporate the catch phrase such as #glutencentric to signify our gluten free lifestyle, we may also develop a catch phrase to bring attention to celebrities who use gluten as the butt of jokes. How about #glutenbutthead? Perhaps doing this on social media would affect a positive change in the global attitudes. It seems ridiculous that we’d have to do this. People with other diseases don’t have catch phrases to be taken seriously, but it seems we need one since “gluten” mocking is consistent in TV scripts, in newspapers, and a subject for comedians. Next, I want to talk about a final cultural constraint that revealed itself in my study. Even though I gave you a sneak peek in Chapter 8’s summary, I saved this one for this final chapter because it has a happy ending (with some hopeful diagnostic tests on the horizon). Many participants observe that family members have symptoms they associate with celiac disease, and when they encouraged them to seek medical help, they refused. This was described so frequently that I determined there is another cultural constraint prompting this behavior. It’s the yours, not mine stance. Yours, Not Mine Stance We mean well when we suggest it may be gluten causing the problems for our loved ones. After all, celiac disease is a genetic disease, so it makes sense that relatives are tested when a family member is diagnosed. However, there is a phenomenon I have observed from analyzing the interview data when family members resist seeking a medical opinion. Recall the lady I met in the pet shop who described her niece’s diet (Chapter 1). When I asked her if the family was following it, she said, “None of us are going to follow that diet.” Considering that her niece was diagnosed with celiac disease, there is a strong likelihood that someone else in that family had it too – and should be following the diet. But that family elected to make the niece feel like the odd one out. This is an example of the yours, not mine stance where family members treat celiac disease as “your” disease, not “mine.” Some people in my study report cooperative family situations where everyone “embraced” the gluten free diet and worked together to help the member with celiac disease. But many describe how immediate and extended family members treated them like it was something unique to the diagnosed individual—not something they could also have. This caused personal strife, as well as a reluctance to recommend that symptomatic family members get tested. When people first hear of something they fear, one coping mechanism is to protect themselves by separating from and even denying the situation (Manoogian, Harter, & Denham, 2010). It is human nature and a primal survival tactic. Understanding the yours, not mine response as a normal knee-jerk reaction helps us to comprehend why family reacts the way they do when we are trying to be helpful. This poses the question: How do we help our family members who have symptoms we attribute to gluten consumption? The first step is to understand the tendency toward the yours, not mine mentality. William (#30) says, “We can spot them,” referring to how those diagnosed with celiac disease can see the symptoms in other family members. Those of us who live with the disease, and who are well informed about the many manifestations of gluten intolerance “just know” that other family members may be reacting to gluten. We hear our family complain of indications ranging from joint pain, migraines, swelling, brain-fog, gas, bloating, back pain, leg numbness, rosacea on the nose, and gastro-intestinal issues (Fasano & Flaherty, 2014), to name a few. When we mention it might be gluten causing the problems, the response is often, “It can’t be, I’ve eaten it all my life!” When people say that, I want to say, “I rest my case!” It is fascinating how food operates in multiple dimensions of life. In the case of the individual, in the “body battleground,” (Chapter 4) food choices cause harmony for those who are aware of what makes their body thrive, or havoc for those who don’t. Like many interviewed who associate their physical maladies with what they eat, I see it on other people. It presents a constant dilemma for me to decide whether to say something, or to keep my big mouth shut. Usually, I say something and wish afterward that I didn’t. Nobody wants to be told your “truth” even if you’ve spent decades learning it, and suffered for years in the process. Their attitudes, in general are: yours, not mine . We don’t want our boats to be rocked. We want to eat whatever we want, with no consequences. It takes time to come to terms with a restrictive diet. There are actually over 200 symptoms of gluten intolerance (Wangen, 2009, p. 37). For example, Dustin (#46) reports, “My teeth started falling apart. They had cracks and cavities. The dentist said they were ‘demineralizing.’” Vivian (#51) says, “I had low bone density and lots of fillings in my teeth.” Cara (#53) says, “I had a lot of problems with my teeth, brain fog, joint pain, headaches, migraines, kidney problems, skin rashes, and hair loss.” We also know how positively the body responds to a gluten free diet and often want to share our knowledge and secret to thriving health with our family members. What kind of kinfolk would we be if we didn’t? On the other hand, we don’t want to become “that person” who attributes every malady to gluten, though scientific studies exist to support that premise. For example, remember Emery (#45) when she observed symptoms of gout in her uncle and inflammation in her nephews. While at a family dinner, she reminded them “her celiac disease” is a genetic disorder, and was met with the response, “What? Aren’t you just being dramatic? Maybe you are following the diet to get attention (Chapter 5)?” As mentioned before, that illustrates gluten-doubt , but it also shows the yours, not mine mentality found in many families. Other respondents said family members object to eliminating wheat from the diet for religious purposes, citing the Bible sanctifying wheat for human consumption (see Psalms 81:16; Psalms 147:14; Ezekiel 4:9; Joel 2:24). By incorporating the yours, not mine stance family members can erect a shield to protect themselves or loved ones from facing the inconveniences associated with celiac disease. Recall Ava’s (#7) daughter who exhibits symptoms of celiac disease, but refuses to be tested because she (erroneously) believes it “skips a generation” (Chapter 5). This is a convenient yours, not mine adaptation that keeps the mother’s disease compartmentalized as “hers” and not “ours.” However, when family members embrace our disease, we have a better chance of surviving. People suffering heart problems tended to survive longer when spouses referred to the problem as “ours” versus “yours” (Rohrbaugh, et al., 2000, p. 781). People with a disease who live in families who accept the it as “ours” are much more likely to succeed. Successfully “coping with stressful life circumstances is a social process” (Lyons, et al., 1998, p. 582). However, the phenomenon of yours, not mine seems to be an initial response while inclusiveness evolves over time with familial acceptance. With a compassionate understanding that the yours, not mine attitude is often an initial survival tactic, we may eventually be able to gently urge loved ones to get tests that may ultimately save their lives. Let’s be clear: we’re not trying to give medical advice. We are just offering our hard-earned knowledge to urge symptomatic family members go to a bona fide doctor to get tested. Though, as we know, it may send them down a difficult path because as many respondents reported, they were initially misdiagnosed. Hope on the Horizon A study conducted by (Megiorni, et al., 2008) found that 90% of European white patients carry the genetic markers for celiac disease, meaning they may develop it sometime in their lifetime. They also found that females are twice as likely to develop it than males (p. 997). Assuming family members eventually come around, to want to understand the cause of their symptoms, what do we say? We may suggest they go to their doctor for some “tests,” but considering that many doctors are misinformed about celiac disease, they may be sent away with “negative results.” Many doctors still believe celiac disease is rare, but because of the work of luminaries such as Dr. Alessio Fasano, Dr. Peter Green and others, we now know that gluten intolerance is fairly common, and that customary serologic testing may not be conclusive. Therefore, accurate outcomes rely on what doctor is chosen and what tests the doctor chooses to prescribe to obtain a diagnosis. Inconsistencies in the diagnosis process contributes to the yours, not mine effect because family members may undergo what they think is comprehensive testing, but may not have been properly assessed. For those who recognize their symptoms may be associated with gluten and who earnestly want to seek a proper diagnosis, there are several tests that are emerging beyond the endoscopy and serological routines. Stool tests and several home tests available now to test whether you have the genetic (HLA) marker, or if you have the antibodies. This is significant because many who have the traditional “celiac panel” blood tests, test negative for the disease (Celiac.org), possibly because the disease has not progressed enough to appear as antibodies in the blood. Other tests are now available for early detection such as a fingertip blood test has been developed to screen first-degree relatives for celiac disease as a first pass (Popp, et al., 2013). It tests for IgA class and EMA antibodies. An HLA-DQ gene marker test (a cheek swab) can determine with 90% accuracy whether someone has a pre-disposition to develop celiac disease (Tollefsen, et al., 2006). Our community had high hopes for the drug called larazotide (also known as INN-202 and AT-1001) studied on those with celiac disease (CDF, 2019). However, the trials ended in Phase 3 (9 Meters, 2022; CDF, 2019). Another treatment researched uses bifidobacterium probiotics to assist the body to “break down gluten and potentially tame the body’s immune system” (Klemenak, 2015). Between new diagnostic procedures and pharmaceutical developments, there is hope! These early testing methods are exciting developments for family members who may have tested negative to customary tests, but who still exhibit symptoms. Medical diagnostic inconsistencies contribute to the yours, not mine and gluten-doubt attitudes. If we felt our family members were correctly tested, we would be more at ease with a negative diagnosis, but unfortunately because of testing inconsistencies, there is often doubt about whether a family member was properly tested, even after seeking medical input. Summary The purpose of this work is to validate the voices of people living with celiac disease and non-celiac gluten sensitivity to create an awareness of the cultural constraints that influence thinking about gluten sensitivities. Additional outcomes include offering best practices to enhance social interactions for this community and broadening the current definition of celiac disease accessibility in the American Disabilities Act. Scholars have considered the cultural aspects of food and studied the effect of hidden disabilities on quality of life. However, few have synthesized the impact of living with food allergies on cultural and social aspects of everyday life. The degree of ease with which those diagnosed with celiac disease navigate life seems dependent on how reactive their bodies are. Those who are asymptomatic can blend into the crowd, take a few risks and eat gluten free meals at restaurants. Contrastingly, those who are highly sensitive often do not go out at all, and if they do, they bring their own food, or ask a lot of questions before consuming foods. In the other venues, we see similar attitudes where long-held “truths” remain intransigent. Our new awareness of the cultural constraints presented in this book, along with the venues where these attitudes are constantly challenged empowers us. Now we have language and tools in our lexicon to broach a discussion to bring about a different awareness. Even if we don’t have a conversation, it helps us to have a way of thinking about it so we don’t feel victimized, isolated, or at the mercy of others to ensure our health and safety. Moving forward, our newfound knowledge, willingness to advocate our needs, and determination can positively transform our lives. Jean’s Redemption After I was diagnosed and began to research celiac disease, I realized that the constant stomachache that made me fear pregnancy and that my previous abnormal pregnancies were likely caused from the undiagnosed disease. Just as inappropriate food choices may have contributed to my father’s early death, consuming gluten all those years before being diagnosed cost my husband and myself a family. In parts of Europe, children are assessed for celiac disease between the ages two and four years old (Popp, A., & Maki, M., 2019). Here in the USA, we’re lucky to be diagnosed by middle age, and often misdiagnosed prior to an accurate diagnosis. If I had been diagnosed when I was younger, I would have been rid of the symptoms, free of pain, and probably had a body that could have endured a pregnancy. Life may have turned out completely different for my husband and me. But my story is one of redemption and transformation. By eliminating the foods that are poison to my body, I thrive and remain grateful for what I have, living an alternative path. It led me to start a company called Alternative Cook, LLC (alternativecook.com), to produce instructional video streams, cookbooks, courses, and consulting. Through all this, I realized that celiac disease is a social issue. My passion for this cause led me to pursue a PhD and carry out the study and write this book. It is my sincere hope that I can have a positive influence on those who live with this disease. Discussion Questions: What amendments would you propose to the American Disabilities Act to enhance our restaurant experience? How can we unite to change the American Disabilities Act to ensure we can go out to eat safely in any restaurant we desire to patronize? What examples can you provide of the yours, not mine stance? References in Chapter 10 9Meters. (2022). 9Meters discontinues phase 3 clinical trial for potential celiac disease drug larazotide. Retrieved 7/1/22 from https://celiac.org/about-the-foundation/featured-news/2022/06/9-meters-discontinues-phase-3-clinical-trial-for-potential-celiac-disease-drug-larazotide/ American Disabilities Act Title III Assistance Manual. Retrieved from https://www.ada.gov/taman3.htm American Disabilities Act. (1990). Retrieved from https://www.ada.gov/ American Disabilities Act. (2012). Questions and answers about the Lesley University agreement and potential implications for individuals with food allergies. Department of Justice. Retrieved from https://www.ada.gov/q&a_lesley_university.htm AP Press. (5/31/19). Court: Lawsuit over boy's gluten-free meal can proceed; Court: Lawsuit over boy's gluten-free meal can proceed. Canadian Press. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5W7N-CMW1-DY9S-T3Y3-00000-00&context=1516831. AP Press. (April 2, 2019 Tuesday). Man sickened after eating gluten at Grand Canyon hotel sues; Man sickened after eating gluten at Grand Canyon hotel sues. Canadian Press. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5VT4-C2S1-DY9S-T1HK-00000-00&context=1516831. Boyns, S. (January 10, 2020 Friday). Workplace Law; Is gluten sensitivity considered a disability? Monterey County Herald (California). Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5XY7-DF61-JBCN-43VV-00000-00&context=1516831 Celiac Disease Foundation. Retrieved from https://celiac.org/ Celiac Disease Foundation. (2019). First patient dosed in first ever phase 3 clinical trial for celiac disease. Retrieved from https://celiac.org/about-the-foundation/featured-news/2019/08/first-patient-dosed-in-first-ever-phase-3-clinical-trial-for-celiac-disease/ Craig, B. (September 18, 2012). Protect yourself as well as your customers; Companies that offer restaurant liability insurance have begun expanding policies to cover claims related to gluten reactions as well as food poisoning and allergic reactions.. QSRweb. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:57VC-9X01-DXN1-20Y3-00000-00&context=1516831. DOJ. (2012). Justice department and Lesley University sign agreement to ensure meal plan is inclusive of students with celiac disease and food allergies. Retrieved November 18, 2018 from https://www.justice.gov/opa/pr/justice-department-and-lesley-university-sign-agreement-ensure-meal-plan-inclusive-students DOJ. (2019). U.S. attorney’s office reaches agreement with Rider University to resolve allegations under the American with Disabilities Act. Retrieved from https://www.justice.gov/usao-nj/pr/us-attorney-s-office-reaches-agreement-rider-university-resolve-allegations-under Duane, J. (2019) Social aspects of food sensitivities. Retrieved from https://digitalcommons.du.edu/etd/1573/ Fasano, A., & Catassi, C. (2012). Celiac disease. The New England Journal of Medicine, 267 (25), 2419-2426. doi: 10.1056/NEJMcp1113994 Fasano, A., & Flaherty. S. (2014). Gluten freedom . Hoboken, NJ: Wiley & Sons Inc. Fasano, A., Berti, I., Gerarduzzi, T., Not, T., Colletti, R., Drago, S., Elitsur, Y., Green, P., Guandalini. S., Hill, I., Pietzak, M., Ventura, A., Thorpe, M., Kryszak, D., Fornaroli, F., Wasserman, S., Murray, J., & Horvath, M. (2003). Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Arch Intern Med, 163 , 286-292. doi: 10.1001/archinte.163.3.286 Fasano, A., Sapone, A., Zevallos, V., & Schuppan, D. (2015). Nonceliac gluten and wheat sensitivity. Gastroenterology, 148 , 1195-1204. doi: 10.1053/j.gastro.2014.12049 Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362 , 383-391. doi: 10.1016/S0140-6736(03)14027-5 Hackman, L. (2017). Franchise litigation rising over dietary considerations . Newstext, LLC. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5PDH-58D1-JCMN-Y51F-00000-00&context=1516831. Healthline. GF Food Delivery Services. Retrieved from https://www.healthline.com/nutrition/gluten-free-meal-delivery Klemenak, M., Dolinsek, J., Langerholc, Tomaz, Di Gioia, D., Micetic-Turk, D. (2015). Administration of Bifidobacterium breve decreases the production of TNF-a in children with celiac disease. Digestive Diseases and Sciences 60 (11), 3386-3392. doi: 10.1007/s10620-015-3769-7 Lyons, R., Mickelson, K., Sullivan, M., & Coyne, J. (1998). Coping as a communal process. Journal of Social and Personal Relationships, 15 (5), 579-605. No doi. Manoogian, M. M., Harter, L. M., & Denham, S. A. (2013). Storied nature of health legacies in the familial experience of type 2 diabetes. In J. Koenig Kellas (Ed.), Family Storytelling: Negotiating Identities, Teaching Lessons, and Making Meaning (pp. 79-96). New York, NY: Routledge. Marimow, A. (2019) A boy, a chicken sandwich and a federal case over dinner at Colonial Williamsburg. Retrieved from https://www.washingtonpost.com/local/legal-issues/a-boy-a-chicken-sandwich-and-a-federal-case-over-dinner-at-colonial-williamsburg/2019/05/31/4fc7763c-83d6-11e9-95a9-e2c830afe24f_story.html Megiorni, F., Mora, B., Bonomico, M., Barbato, M., Montuori, M. Viola, F., Trabace, S., & Mazzilli, M. (2008). HLA-DQ and susceptibility to celiac disease: Evidence for gender differences and parent-of-origin effects. American Journal of Gastroenterology . doi: 10.111/j.1572-0241.2007.01716.x NIH. (2018). Visual impairment, blindness cases in U.S. expected to double by 2050. National Institutes of health. Retrieved November 20, 2018 from https://www.nih.gov/news-events/news-releases/visual-impairment-blindness-cases-us-expected-double-2050 Perlmutter, D., & Loberg, K. (2013). Grain brain: The surprising truth about wheat, carbs, and sugar – your brain’s silent killers . Little Brown and Company: New York, NY. Popp, A., Jinga, M., Jurcut, C., Balaban, V., Bardas, C., Laurila, K., Vasilescu, F., Ene., A., Anca., I., & Mäki, M. (2013). Fingertip rapid point-of-care test in adult case-finding in coeliac disease. Gastroenterology, 13 (115). http://www.biomedcentral.com/1471-230X/13/115 Popp, A., & Mäki, M. (2019). Changing pattern of childhood celiac disease epidemiology: contributing factors. Front Pediatrics, 7(357). doi: 10.3389/fped.2019.00357 Rohrbaugh, M. J., Mehl, M. R., Shoham, V., Reilly, E. S., & Ewy, G. A. (2008). Prognostic significance of spouse we talk in couples coping with heart failure. Journal of Consulting and Clinical Psychology, 76 (5), 781-789. doi: 10.1037/0893-3200.16.1.3 Schilling, B. (2015). Lesley U after the food allergy Justice settlement. Food Management (Penton). Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5GMH-Y6J1-DY2W-F4G4-00000-00&context=1516831. Smith v University of Maryland. (2020). Case 8:20-cv-00433-TDC. Filed 2/20/20. Retrieved from https://www.courtlistener.com/docket/16868125/smith-v-university-of-maryland-college-park/ AP Press (2020). Suit: University fed gluten to student with celiac disease . College Park, MD. Retrieved from Nexis-Lexis May 5, 2020. https://advance-lexis-com.du.idm.oclc.org/document/?pdmfid=1516831&crid=469f1327-8692-4a7a-9b24-bf52c26bbccf&pddocfullpath=%2Fshared%2Fdocument%2Fnews%2Furn%3AcontentItem%3A5Y90-8D21-JC65-52YB-00000-00&pdcontentcomponentid=304481&pdteaserkey=sr0&pditab=allpods&ecomp=-763k&earg=sr0&prid=77a0f70b-607a-4db6-a39d-30f293c477fd Tollefsen, S., Arentz-Hansen, H., Fleckenstein, B., Molberg, O., Raki, M., Kwok, W., Gunther, J., Lundin, K., & Sollid, L., (2006). HLA-DQ2 and –DQ8 signatures of gluten T cell epitopes in celiac disease. Journal of Clinical Investigation, 116 (8). doi: 10.1172/JC127620 U.S. Census. (2012). Nearly 1 in 5 people have a disability in the U.S . Retrieved November 10, 2018 from https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html U.S. Fed News (2012). Justice Department And Lesley University Sign Agreement To Ensure Meal Plan Is Inclusive Of Students With Celiac Disease And Food Allergies. U.S. Fed News. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:57B4-BC11-F12F-F356-00000-00&context=1516831. Uhde, M., Ajamian, M., Caio. G., DeGiorgio, R., Indart, A., Green, P., Verna, E. Volta, U., & Alaedini, A. (2016). Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease. Gut, 65 , 1930-1937. doi: 10.1136/gutjrl-2016-211964 van Berge-Henegouwen & Mulder (1993). Pioneer in the gluten free diet: Willem-Karel Dicke 1905-1962, over 50 years of gluten free diet. Gut, 34, 1473-1475. doi: 10.1136/gut.34/11/1473 Wangen, S. (2009). Healthier without wheat . Seattle, WA: Innate Health Publishing. Copyright © 2021 by Alternative Cook, LLC All rights reserved. Published in the United States by Alternative Cook, LLC LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION Data Names: Duane, Jean Elizabeth, PhD, Author. Title: Gluten-Centric Culture, A Commensality Conundrum Description: Centennial, CO: Alternative Cook, LLC, 2021 Identifiers: ISBN 978-0-9787109-2-7 (hardcover) ISBN 978-0-9787109-3-4 (ebook) Subjects: Social Science, Food Sensitivities, Communication Studies, Celiac Disease Alternativecook.com Dedication This book is dedicated first to my husband, Mark my champion in life. Thank you for giving me so many enriching experiences. Second, I dedicate this book to the survey respondents and interview participants. Thank you for providing courageous examples of life with celiac disease and food sensitivities. Your interviews made me feel less alone, and gave me the confidence to forge ahead with this book. I think of you often and am so grateful that we can unite as a community. It is my sincere hope that this book can break down some of the social hurdles by bringing light to them. Creating awareness and having language to describe it are the first steps to making a positive change. Acknowledgements I’d like to take a moment to thank Heather, my editor for being my muse and for helping me to find and express my “voice” throughout. Thank you for your incredible patience as I learned the art of writing. I have loved our sessions and your insight! Thank you to Scott Adams at celiac.com for allowing me to post the survey, and to write about social scenarios these past few years. Thank you to my sister, Becky for your friendship and support. Thank you to my friends, Wendy, Marcia, Lori, Laura, Barbara, Jana, Kelley, Doreen, Sandy, the Literari Sisters, and my philanthropic Sisters who have given me support throughout. Thank you to my doctoral committee, Christina, Kate, Beth, and Nicole. I love you all, and thank you for your kind, loving understanding as I struggled with the disease to navigate life. Go to: Gluten-Centric Culture: Chapter 9 - Travel Tips Restaurant Primer

Celiac.com 05/19/2023 - Living with celiac disease can be a challenge, and one of the biggest hurdles is the cost of gluten-free foods. Gluten-free products are notoriously expensive to begin with, and with grocery prices soaring in recent times, it's becoming increasingly difficult for those with celiac disease to keep up with the costs. Celiac disease is an autoimmune disorder that affects approximately one percent of the Canadian population. It is triggered by gluten, a protein found in wheat, rye, and barley grains, which can cause inflammation of the gut lining and various symptoms such as diarrhea, constipation, vomiting, bloating, tiredness, and headaches. For those with celiac disease, eating even a small amount of gluten can lead to long-term complications such as nutrient deficiencies, a higher risk of viral infections and pneumonia, increased risk of broken bones, and a higher risk of bowel cancer. That's why it's essential for people with celiac disease to stick to a gluten-free diet, which is medically indicated and not a personal choice. However, gluten-free products are often priced at double or triple the price of their regular gluten-containing equivalents. The recent pandemic has caused the prices of gluten-free food to rise even more. According to Celiac Canada, gluten-free products can cost between 150 and 500 per cent more than their regular gluten-containing equivalents. For many Canadians who have celiac disease, this has been a significant financial burden. A survey conducted by Celiac Canada showed that 93 per cent of respondents felt the cost of gluten-free food was more expensive than before the pandemic. Over a third of those respondents had to adjust their finances to buy the groceries they need, and one per cent had to turn to food banks. In a recent survey conducted by Celiac Canada, almost 93 percent of 7,400 Canadians, who must eat gluten-free because of their disorder, said they feel the cost of gluten-free food was more expensive than before the pandemic. Of those respondents, more than a third said they have had to adjust their finances to be able to buy the groceries they need, and one percent have had to turn to food banks. The Canadian government has announced a one-time grocery rebate for "low- and modest-income Canadians" to provide relief for Canadians as prices soar. However, Celiac Canada is calling for an increased rebate specifically for people with celiac disease in that income bracket. The association is asking for a celiac rebate of up to $230 per adult and $122.50 per child, with an extra $122.50 for people who are single. It's also worth noting that people with celiac disease can claim "the incremental costs associated with buying gluten-free food products as a medical expense" with the Canada Revenue Agency. However, doing so is an onerous task with little payout at the end, and the system is "just unworkable for the average Canadian," according to Melissa Secord, executive director of Celiac Canada. Living with celiac disease is already expensive, and the skyrocketing cost of gluten-free products only adds to the burden. In the short-term, there may be no relief in sight. However, it's important to stay informed about available resources and seek support from organizations like Celiac Canada. With ongoing advocacy and support, we can work towards making gluten-free living more accessible and affordable for all. Learn more at CTVNews.ca

Celiac.com 05/17/2023 - In a shocking incident that highlights the need for greater celiac awareness and inclusivity, a Tuscan restaurateur recently turned away a customer simply because they were celiac. Celiac.com 05/16/2023 - The customer, Valentina Leporati, known as Valentina Gluten Free, a prominent social media figure with nearly 80,000 followers, shared this encounter on her platform and received an outpouring of support. According to Valentina, she was in the process of making a reservation for a party of ten, but when she informed the restaurant about their dietary restrictions, she was met with a blunt and dismissive response: "No, we don't admit celiacs here." Unfortunately, Valentina's is not an isolated incident. Prejudice against people with celiac disease is not uncommon. Although many restaurants will try to accommodate people with gluten restrictions, many others simply inform celiacs that they can't guarantee a gluten-free meal, but some restaurants can be rude or downright hostile. Valentina's experience resonates with many celiacs and gluten sensitive diners who have faced unpleasant episodes at restaurants. The fear and lack of understanding surrounding celiac disease can often trigger resistance. It raises the question: why are some restaurateurs hesitant to welcome gluten-free diners? For people living with celiac disease, booking a restaurant isn't just about finding a safe meal option; it about keeping safe by communicating their needs, and hoping that the restaurant is knowledgeable and accommodating. This vulnerability can make celiac individuals feel exposed and anxious from the very beginning. The response of "you are not accepted here, you cannot enter" is not only harsh, but also reflects a lack of awareness. Celiac disease is not a food allergy; it simply requires the avoidance of gluten. A little understanding and flexibility can go a long way in creating a welcoming environment. It can also mean more business via dedicated regular gluten-free diners looking for a safe, quality dining experience. Valentina, who also works in the food industry and operates a bakery/pastry shop in Sarzana, Liguria, chose not to name the specific restaurant, emphasizing her commitment to kindness over retaliation. However, she wanted to share her experience to shed light on the prevalent ignorance surrounding celiac disease, and the need for more education and acceptance by the restaurant industry in general. It's beneficial for restaurateurs to recognize the potential benefits of catering to gluten-free patrons and welcoming those with celiac disease. By offering gluten-free options and ensuring staff members are educated on dietary requirements, restaurants can tap into a growing market and enhance their reputation as inclusive establishments. Moreover, embracing the diverse needs of customers fosters a sense of community and demonstrates a commitment to customer satisfaction. While Valentina's experience was disheartening, her decision not to shame the restaurant, but instead raise awareness exemplifies her unwavering belief in kindness. This incident should serve as a catalyst for change, inspiring both consumers and restaurateurs to work together to eradicate ignorance, and build a more inclusive dining culture. Do you have a story of defensive, resistant, even hostile restaurant reactions to a gluten-free request? Share it in the comments below. Read more at breakinglatest.news

Celiac.com 05/15/2023 - Biotechnology company Immunic, Inc., focuses on developing oral, small molecule therapies for chronic inflammatory and autoimmune diseases, including celiac disease. Celiac disease is an autoimmune disorder that affects approximately 1% of people globally. People with celiac disease have an abnormal immune response to gluten, a protein found in wheat, barley, and rye. This abnormal immune response damages the lining of the small intestine, leading to malabsorption and other serious complications. The company recently announced positive results from the Part C portion of its Phase 1 clinical trial of IMU-856 in treating patients with celiac disease. The trial consisted of 36 patients with celiac disease who were randomized to receive placebo or one of two doses of IMU-856 (80 mg or 160 mg) for four weeks, followed by two weeks of gluten challenge. The trial assessed the protection of gut architecture, reduction of gluten-induced intestinal damage, improvement of patients' symptoms related to gluten exposure, dose-dependent changes in biomarker responses, and enhancement of nutrient absorption. The trial results showed that patients treated with IMU-856 had a dose-dependent reduction in gluten-induced damage to their intestinal villi, the small, finger-like projections in the small intestine that play a key role in nutrient absorption. The results also showed that IMU-856 restored the absorption of essential nutrients, such as vitamin B12, for red blood cell formation and the functioning of the brain and nervous system. Immunic believes the clinical evidence supports IMU-856's ability to re-establish proper gut cell renewal, which could prove useful in treating other gastrointestinal diseases. Patients treated with IMU-856 also saw improvement in disease-related symptoms such as bloating and tiredness, and the treatment was observed to be safe and well-tolerated. IMU-856's ability to re-establish proper gut cell renewal, observed in preclinical studies, translates into clinical benefits for patients with celiac disease. Most importantly, the observed protection of intestinal villi from gluten-induced damage, independent of celiac-specific targeting immune mechanisms, seems to be unique among proposed therapeutic approaches, and may be applicable to other gastrointestinal diseases. Immunic is now preparing for clinical phase 2b testing of IMU-856 in ongoing active celiac disease, while also considering other potential clinical applications for this first-in-class and orally available molecule. The positive results from the Phase 1 clinical trial of IMU-856 offer some hope for the development of a new therapeutic approach to treating celiac disease and other gastrointestinal disorders. The trial's success represents a significant milestone in the effort to develop safe and effective treatments for patients with celiac disease, and other chronic inflammatory and autoimmune conditions. The company believes that this data set provides initial clinical proof-of-concept for a new therapeutic approach to gastrointestinal disorders by promoting the regeneration of bowel architecture. Now, the story of a promising new celiac drug treatment is a story familiar to many of us. So far, the story has always ended the same way: the promising drug fails in the end. Here's hoping this one ends more happily. Stay tuned for more on this and related stories.