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  1. Celiac.com 10/14/2015 - For the past few years, the FDA has held an annual public workshop to discuss the selection of end points and clinical outcome measures appropriate for drug development in GI diseases. This spring, for the first time, celiac disease made it onto the agenda of the Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics (GREAT 3) meeting. At the meeting, experts discussed the challenges of identifying an appropriate target population for pharmacologic therapy, defining and measuring efficacy in clinical trials for celiac disease, and the timing of assessment end points. GREAT 3 was held March 30 to 31, 2015, and was cosponsored by the American College of Gastroenterology; American Gastroenterological Association; Crohn's & Colitis Foundation of America; North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition; Pediatric IBD Foundation; and North American Society for the Study of Celiac Disease. Among the topics covered at the first GREAT devoted to celiac disease and related issues, were discussions of the appropriate target population for pharmacological therapy in celiac disease, and the definition and measurement of efficacy in celiac disease clinical trials intended to support marketing approval, including the role and timing of assessment of specific endpoints. There was also much discussion of the need for pharmacologic treatments to accelerate healing in patients with untreated celiac disease and reduce the risks for long-term consequences of ongoing inflammation, even when inflammation is symptomatic. Read More at GREAT3.org.
  2. Celiac.com 11/18/2014 - A recent report from NPR highlighted the challenges for people with celiac disease who turn to local food banks for relief. Many food pantries simply do not stock dedicated gluten-free items for celiac sufferers. Those that do try to meet the needs of their gluten-free clients face daunting challenges. Some basic math can help to put the problem into perspective. About one-percent of Americans, or about 3.5 million people suffer from celiac disease. Assuming these folks use food banks at the same rate as other Americans, then, at any given time, one in seven, or about 500,000 of them will rely on food banks for nourishment. Now, a number of food pantries are making efforts to collect, sort and distribute gluten-free items for people with celiac disease. However, their challenge is compounded by the fact that people with celiac disease are not solely concentrated in cities, where food banks may be more equipped to stock specialty gluten-free foods. Also, those larger pantries that are located in big cities must, by definition, serve larger numbers of people with celiac disease. For example, if we apply the numbers to the Phoenix metro area, with a population of 4.3 million people, about 600,000 people would require food pantry assistance at any given time. That would mean that pantries like the Foothills Food Bank would need to stock food for about 6,000 people with celiac disease on any given day. To their credit, Foothills Food Bank in Phoenix prioritizes donated gluten-free items for people with celiac disease. But keeping enough food on their shelves is a constant challenge, and keeping specialty items, such as gluten-free food requires considerable effort. So, while relief agencies like Food Bank of WNY in Buffalo, NY, try to educate soup kitchens and pantries about the importance of providing gluten-free items, they face an uphill battle that goes beyond their normal challenges of simply providing food. One bright spot for gluten-free eaters in need of assistance is Pierce’s Pantry in Massachusetts, which has dedicated a page on its website to helping people nationwide to find emergency gluten-free food. With these stark realities facing both food banks and celiac sufferers in need of food assistance, please consider reaching out to your local food bank to make a donation of gluten-free food, especially during the holiday season. Here’s a link to Pierce’s Pantry Gluten-free Food Resource Page.
  3. This article originally appeared in the Winter 2014 issue of Journal of Gluten Sensitivity. Celiac.com 04/30/2014 - Dr. Catassi and colleagues reported, in the September of 2013 issue of Nutrients, that during the previous 21 months for every ten reports about celiac disease, there was one report of non-celiac gluten sensitivity (1). They plotted the publication ratio over the last 60+ years, showing that there has been a steady increase of reports on non-celiac gluten sensitivity in the medical literature that has grown proportionally faster than the number of reports about celiac disease, and most of us are aware of the rapid growth made by the celiac literature during that same period. By implication, we may reasonably assume that this reflects a growing interest among physicians and other health care workers. Catassi and colleagues mention the first meeting of an expert panel in London during 2011, and report on discussions from the December, 2012 meeting of experts in Munich, addressing a wide range of illnesses thought to have some connection with gluten ingestion (1, 2). An approximately concurrent report by Mooney et al ( including Sanders, one of the above-mentioned experts) (3) attempts to clarify and extend some of the information from the Catassi et al report, as well as contradicting it on the issue of IgG anti-gliadin antibodies as a potential biomarker for non-celiac gluten sensitivity (1). This growing trend of interest in non-celiac gluten sensitivity, along with the publications specifically cited here, offer enormous affirmation of the Journal of Gluten Sensitivity and its editorial staff, and we are loathe to criticize it in any way. Oats However, in the same report, Catassi and colleagues repeatedly decry the “lack of biomarkers” for non-celiac gluten sensitivity (1). In essence, they are saying that there is no known laboratory test that will reliably identify this form of gluten sensitivity. Further, while they admit that they have “poor knowledge of the pathophysiology” of non-celiac gluten sensitivity, they seem to assume that oats may be safely eaten by individuals afflicted by this sensitivity. They appear to reflexively exclude oats from any further investigation, as a possible factor in non-celiac gluten sensitivity. Such assumptions appear to be bleeding over into their perceptions of non-celiac gluten sensitivity from their work with celiac disease. The IBS Connection Catassi et al also cite one study that reports a rate of 28% of non-celiac gluten sensitivity among IBS patients, and a larger study that reports a rate of 30% of IBS patients who have wheat sensitivity, either with or without other food sensitivities. This same group reports a prevalence of IBS in northern Europe of between 16% and 25% of the population (1). If we take their most conservative numbers, estimating that IBS afflicts only 16% of the population, and that 28% of that group has non-celiac gluten sensitivity, then about 4.48% of northern Europeans should have non-celiac gluten sensitivity. Catassi et al say that the rate could well be above 1% (1). Some might suggest that this is a gross understatement that distorts the data rather than clarifying it. This, too, may reflect a preoccupation with lessons learned from celiac disease, rather than a de novo view of gluten sensitivity. They cite yet another study of a subset of IBS patients in which diarrhea was the predominant symptom, particularly among patients with genetic HLA DQ2 and DQ8 markers, which are associated with celiac disease. These IBS patients showed compromised bowel barrier function when consuming gluten, presumably as a function of barrier permeability. They go on to assert that the gluten free diet offers some measure of symptom relief even to those patients whose IBS may be partly or wholly driven by low-fermentable, poorly-absorbed, short-chain carbohydrates, as gluten proteins may be included in this list of potentially problematic foods. Psychiatric Connections Catassi and colleagues also explore schizophrenia and autism where sub-groups of non-celiac gluten sensitivity have been identified. They report the findings of two studies of schizophrenic patients wherein no benefits were seen after gluten avoidance over the study periods of either 10 days (4) or 5 weeks of treating 8 chronic schizophrenic patients (5). Catassi et al also mention the mildly positive results from a study of 14 weeks’ duration (6). However, beyond citing one paper authored by Dr. Curtis Dohan, identified as the earliest suggestion of a connection between gluten and schizophrenia, they do not mention the recommendations of Dohan and his colleagues, who called for a minimum study duration of at least six months and as much as a year on a gluten free, dairy free diet before the potential benefits of this diet can be observed in schizophrenic patients. They also recommended treating newly diagnosed and newly relapsed schizophrenic patients with this diet as they had observed little positive response among the chronic schizophrenic subjects they studied (8, 9, 10, 11). Further, Catassi et al completely fail to acknowledge the work by Zioudrou and colleagues (12) that identifies a possible source of urinary peptides seen both in many schizophrenics (13, 14) and many patients with autism (15). These peptides have, since their discovery, been recognized as psychoactive (12). These insights are particularly important in these realms of mental illness and abnormal development, as they offer insights that may someday offer vastly more effective treatments than are currently available. Again, celiac disease may be coloring the lens through which these experts are looking at non-celiac gluten sensitivity. Catassi and his colleagues go on to acknowledge that IgG class antibodies against gliadin, a sub-group of gluten proteins, as markers for increased intestinal permeability (1) but they fail to acknowledge this protein group as the missing “biomarker” of gluten sensitivity. They say: “Non-celiac gluten sensitivity is currently a diagnosis of exclusion with the only positive diagnostic criterion being the clinical response to gluten withdrawal. Patients should have negative celiac serology, normal duodenal histology, and negative IgE-based tests” (1). IgG against gliadin offers a biomarker for 19.8% tp 23.5% of the population. Yet serology is the most common approach to measuring IgG anti-gliadin, and others have made this connection, identifying IgG class anti-gliadin antibodies as “ a measure of the immune response to gliadin” (7). (Gliadin is a sub-group of gluten proteins.) If someone is mounting an immune response against gliadin, it is reasonable to say that they are gluten sensitive. So why would Catassi and colleagues back away from the data suggesting that non-celiac gluten sensitivity may afflict from 4.48% to as many as 7.5% of the northern European population, based only on those with diagnosed IBS? Further, 12% of healthy blood donors in the United Kingdom have also been reported to show elevated levels of anti-gliadin antibodies (16). Taken together, these suggest a rate of non-celiac gluten sensitivity, as identified by IgG class antibodies against gliadin among northern Europeans, of between 16.8% and 19.5% of the general population. Dr. Sapone and her group have identified and reported on a group of non-celiac gluten sensitive patients (21) who present with what Dr. Sapone and her group have elsewhere characterized as a function of the innate immune system and comprise between 6% and 7% of the general population (22). Only about half of these subjects show anti-gliadin antibodies but since they are not healthy blood donors or IBS patients, we may reasonably predict that between 22.8% and 26.5% of the population has non-celiac gluten sensitivity. And there are likely a lot more cases than are suggested by those numbers. For instance, about 7% of patients with multiple sclerosis showed IgG class antibodies against gliadin (17), while more than 20% of patients with Crohn’s disease, and 6.5% of patients with rheumatoid arthritis also showed elevated IgG antibodies against gliadin (18), and Samaroo et al found the same antibodies elevated in the sera of 5.6% of the schizophrenic patients they studied (19). And Hadjivassiliou’s group states “IgG antigliadin antibodies have a high sensitivity not only for patients with coeliac disease but also for those with minimal or no bowel damage where the principal target organ is the cerebellum or peripheral nervous system” (20). Cancer Perhaps the most distressing part of the Catassi report is where it says “No major complication of NCGS has so far been described; especially autoimmune comorbidity , as observed in celiac disease, has not been reported so far.” In 2007, Anderson et al published a report in which people with non-celiac gluten sensitivity experienced: “ ..... the incidence of malignant neoplasms in patients with celiac disease (positive EMA test) was similar to that of the Northern Ireland population. However, mortality from malignant neoplasms, NHL [non-Hodgkin’s lymphoma], and digestive system disorders was significantly increased in patients who were gluten sensitive with a negative EMA test” (7). This same report states that it may be the first investigation of malignancy and mortality among non-celiac gluten sensitive patients (7) and they have found that cancer and increased mortality is higher among those who are gluten sensitive than among those with celiac disease. Why Not IgG Anti-gliadin as Biomarkers? You may, like me, be wondering why the Catassi-led group retreated from the use of IgG antibodies against gliadin as a bio-marker for gluten sensitivity, when the consequences of ignoring it are made obvious by the Anderson et al study mentioned in the previous paragraph, showing increased mortality rates in this group. This result may be due to physicians’ failure to recommend a gluten free diet, reflecting their skepticism regarding this marker. The Catassi et al skepticism is especially puzzling when at least one of their own members (Sanders) had submitted a report for publication at about the same time, in which he and his colleagues assert a prevalence of non-celiac gluten sensitivity of 12%, among healthy blood donors, based on IgG anti-gliadin antibodies (3). We are also left wondering why these experts would ignore the recommendations and insights embodied in the large and earliest body of research connecting schizophrenia and gluten, authored by Curtis Dohan and his colleagues (8-14) while Catassi et al seem to give credence to the negative results reported by investigations lasting only ten days or five weeks? I think that Catassi et al have answered this question, but before we discuss that, I’d like to point out that elite athletes have reported improved performance on a gluten free diet (23, 24). They were already performing at the very pinnacle of their sports, yet their experimenting with the gluten-free (and in one case, also a paleo-diet) led to enhanced performance. That really is quite amazing. And what about those with IgG AGA who have neurological or other autoimmune diseases? Also, the girl that Kim and I wrote about in the last issue of this Journal is a perfect example of a patient with autoimmune diabetes, where celiac disease was ruled out, so she was told that she would have to inject insulin for the rest of her life. Yet all she needed was a gluten free diet and very insightful parents who were willing to press physicians to expand their thinking a little. I must say that I am very pleased with Catassi et al’s stated recognition of extra-intestinal manifestations of non-celiac gluten sensitivity. However, their approach is to call for further characterizing the various groups that respond differently to gluten, based on grouping by specific illnesses. This may miss the larger picture. Catassi et al acknowledge that “The vast majority of celiac experts initially reacted with a great deal of skepticism to the concept of NCGS existence and the fact that it was a separate entity from celiac disease” (1). They go on to suggest that we are about at the same place that we were forty years ago with celiac disease. Perhaps. As it stands, we have celiac disease and we have non-specific anti-gliadin antibodies that signal the lion’s share of cases of non-celiac gluten sensitivity, an increased risk for autoimmunity, a majority of a wide range of neurological diseases that are also more frequent among those with celiac disease, we also have many children with ADHD who recover on a gluten-free diet alone, we have a very large majority of children with learning disabilities who recover on a strict gluten-free diet, we have people who lose weight on a gluten-free diet, we have people who just think that they feel better on a gluten-free diet, and we have elite athletes who perform better on a gluten free diet. We also have cases of non-celiac gluten sensitivity as characterized by Dr. Sapone et al, where the innate immune system is involved, and we only have anti-gliadin antibodies associated with about half of those individuals. When we see all these fractured pieces scattered about the landscape of gluten induced illness, it is highly likely that we are missing the larger vista that incorporates all of them. But we would have to let go of some sacred cows to see that larger picture. The first sacred cow we should abandon is the idea of celiac disease as a distinct and most important disease entity, and begin to think of gluten induced disease, or to use Rodney Ford’s term, “gluten syndrome”. I think it is great that non-celiac gluten sensitivity is getting more recognition, but the current lens through which medical researchers view celiac disease and non-celiac gluten sensitivity may be clouded by their reductionist paradigm. The problem, as I see it, is that celiac disease has long been mischaracterized. When Dr. Dicke showed that the gluten free diet reversed celiac disease, few believed him. He was laughed out of a world conference in New York City and vowed never to return to the USA. When he and his colleagues searched for a ‘scientific’ way to validate the diet as an effective treatment for celiac disease, they found intestinal villous atrophy, so the medical understanding of gluten induced illness has evolved, primarily, as an intestinal ailment characterized by villous atrophy. I think that Dr. Rodney Ford’s conception of celiac disease as a sub-group of intestinal and extra-intestinal ailments that first derive from gluten’s assault on neurological tissues (25) is better rooted in the facts, and much more likely to prove true. Ford’s perspective may well provide a better tool for understanding gluten’s impact on human health - although it impugns major parts of more than seventy years of medical and scientific research into celiac disease. It may even suggest that we were looking in the wrong direction for much of the time. Ford postulates that gluten’s first insult is to neurological tissues. Those who are susceptible to celiac disease may go on to develop intestinal damage as a sequel to the neurological injury. Those who are not susceptible to celiac disease may go on to develop any of a number of gluten-related ailments, depending on their unique genetic makeup, experiences, and exposures (25). Understandably, Rodney’s conception may be unpopular among some medical practitioners and researchers - but it sure fits the facts better than anything else I’ve seen. Sources: Catassi C, Bai JC, Bonaz B, Bouma G, Calabrò A, Carroccio A, Castillejo G, Ciacci C, Cristofori F, Dolinsek J, Francavilla R, Elli L, Green P, Holtmeier W, Koehler P, Koletzko S, Meinhold C, Sanders D, Schumann M, Schuppan D, Ullrich R, Vécsei A, Volta U, Zevallos V, Sapone A, Fasano A. Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders. Nutrients 2013, 5, 3839-3853. http://www.drschaer-institute.com/smartedit/documents/yourlife/dsif_03_2011_uk_internet.pdf Mooney PD, Aziz I, Sanders DS. Non-celiac gluten sensitivity: clinical relevance and recommendations for future research. Neurogastroenterol Motil. 2013 Nov;25(11):864-71. doi: 10.1111/nmo.12216. Epub 2013 Aug 12. Storms LH, Clopton JM, Wright C. Effects of gluten on schizophrenics. Arch Gen Psychiatry. 1982 Mar;39(3):323-7. Potkin SG, Weinberger D, Kleinman J, Nasrallah H, Luchins D, Bigelow L, Linnoila M, Fischer SH, Bjornsson TD, Carman J, Gillin JC, Wyatt RJ. Wheat gluten challenge in schizophrenic patients. Am J Psychiatry. 1981 Sep;138(9):1208-11. Vlissides DN, Venulet A, Jenner FA.A double-blind gluten-free/gluten-load controlled trial in a secure ward population.Br J Psychiatry. 1986 Apr;148:447-52. Anderson LA, McMillan SA, Watson RG, Monaghan P, Gavin AT, Fox C, Murray LJ. Malignancy and mortality in a population-based cohort of patients with coeliac disease or “gluten sensitivity”. World J Gastroenterol. 2007 Jan 7;13(1):146-51. Dohan “Cereals and schizophrenia: data and hypothesis” Acta Psychiat Scand 1966; 42: 125-152 Dohan et. al. “Relapsed Schizophrenics: More Rapid Improvement on a Milk-and Cereal-free Diet” Brit J Psychiat 1969; 115: 595-596 Dohan et. al. “Is Schizophrenia Rare if Grain is Rare?” Biol Psychiat 1984; 19(3): 385-399 Dohan “Is celiac disease a clue to pathogenesis of schizophrenia?” Mental Hyg 1969; 53: 525-529 Zioudrou et. al. “Opioid peptides derived from food proteins. The exorphins” J Biol Chem 1979; 254:2446-2449 Dohan FC. Genetic hypothesis of idiopathic schizophrenia: its exorphin connection. Schizophr Bull. 1988;14(4):489-94. Severance EG, Alaedini A, Yang S, Halling M, Gressitt KL, Stallings CR, Origoni AE, Vaughan C, Khushalani S, Leweke FM, Dickerson FB, Yolken RH. Gastrointestinal inflammation and associated immune activation in schizophrenia. Schizophr Res. 2012 Jun;138(1):48-53. Reichelt KL, Tveiten D, Knivsberg AM, Brønstad G.Peptides’ role in autism with emphasis on exorphins.Microb Ecol Health Dis. 2012 Aug 24;23. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A.Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71. Shor DB, Barzilai O, Ram M, Izhaky D, Porat-Katz BS, Chapman J, Blank M, Anaya JM, Shoenfeld Y. Gluten sensitivity in multiple sclerosis: experimental myth or clinical truth? Ann N Y Acad Sci. 2009 Sep;1173:343-9. doi: 10.1111/j.1749-6632.2009.04620.x. Shor DB, Orbach H, Boaz M, Altman A, Anaya JM, Bizzaro N, Tincani A, Cervera R, Espinosa G, Stojanovich L, Rozman B, Bombardieri S, Vita SD, Damoiseaux J, Villalta D, Tonutti E, Tozzoli R, Barzilai O, Ram M, Blank M, Agmon-Levin N, Shoenfeld Y. Gastrointestinal-associated autoantibodies in different autoimmune diseases. Am J Clin Exp Immunol. 2012 May 25;1(1):49-55. Print 2012. Samaroo D, Dickerson F, Kasarda DD, Green PH, Briani C, Yolken RH, Alaedini A. Novel immune response to gluten in individuals with schizophrenia. Schizophr Res. 2010 May;118(1-3):248-55. doi: 10.1016/j.schres.2009.08.009. Epub 2009 Sep 11. Hadjivassiliou M, Grünewald RA, Davies-Jones G A B. Gluten sensitivity: a many headed hydra. Heightened responsiveness to gluten is not confined to the gut. BMJ. 1999 June 26; 318(7200): 1710–1711. Sapone A, Lammers KM, Casolaro V, Cammarota M, Giuliano MT, De Rosa M, Stefanile R, Mazzarella G, Tolone C, Russo MI, Esposito P, Ferraraccio F, Cartenì M, Riegler G, de Magistris L, Fasano A. Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity. BMC Med. 2011 Mar 9;9:23. Sapone A, Lammers K M, Mazzarella G, Mikhailenko I, Cartenì M, Casolaro V, Fasano A. Differential Mucosal IL-17 Expression in Two Gliadin-Induced Disorders: Gluten Sensitivity and the Autoimmune Enteropathy Celiac Disease. Int Arch Allergy Immunol. 2010 April; 152(1): 75–80. Published online 2009 November 24. https://www.celiac.com/articles/23375/1/New-Djokovic-Book-Promotes-Gluten-free-Diet/Page1.html http://www.examiner.com/article/miami-heat-guard-ray-allen-lost-10-lbs-on-gluten-free-paleo-diet Ford RPK. The gluten syndrome: a neurological disease. Medical Hypotheses. 2009:73, 438-440
  4. The following report was prepared by Ann Whalen, celiac, and editor/publisher of Gluten-Free Living , which is a bimonthly newsletter for celiacs - Gluten-Free Living, PO Box 105, Hastings-on-Hudson, NY 10706. On March 10th, more than 20 members of the celiac community and celiac disease specialists (see list at end) attended a meeting of the Digestive Diseases Intra-agency Coordinating Committee, a part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The meeting, held to update the current status of Celiac Disease, was chaired by Jay Hoofnagle, M.D., Director of the Division of Digestive Diseases and Nutrition at the NIDDK. At the meeting, presentations were made by Martin Kagnoff, M.D., Joseph Murray, M.D., Alessio Fasano, M.D., and Frank Hamilton, M.D. Dr. Kagnoff is a gastroenterologist and Professor of Medicine at the University of California, San Diego. He spoke about his research into the genetics of Celiac Disease, focusing on the pathogenesis. Dr. Kagnoff is well known for his research into the genetics of Celiac Disease, and several of his studies have been funded by the NIH. Dr. Murray, Associate Professor of Medicine and clinician at the University of Iowa Hospitals and Clinics, described his experience with Celiac Disease both in Iowa and in Ireland, noting that his interest in celiac disease is clinical. He emphasized what he called the Classic II symptoms, meaning the actual symptoms patients have today and not the Classic symptoms many doctors may be familiar with. He said the rate of diagnosis is proportional to suspicion. Dr. Murray described the celiac disease experience at the University of Iowa from 1985 to 1997, presenting statistics that indicated a steep increase in diagnosis. At our institution, Celiac Disease is an adult disease, he said, and is now seen as frequently as Crohns Disease. Anticipating the question, Why look for Celiac Disease?, Dr. Murray gave his reasons: preventing lymphoma and osteoporosis, as well as resolving fatigue and nonspecific symptoms and shortening the current significant delays in diagnosis. Dr. Fasanos presentation was called Where Have All the American Celiacs Gone? He described what has happened in the field of celiac disease in various parts of the world, including some parts of the United States, but emphasized the European experience. Dr. Fasano noted that plans are already underway in Italy to screen all seven-year-olds in 1999. Dr. Fasano explained why an epidemiology study is critically needed in this country. He pointed out the benefits of such a study for four groups: The American health care community: lower health care costs, increased awareness of celiac disease and more knowledge of its protein manifestations in the US Participating physicians: publications, more patients and increased credibility. The American people: the prevalence will be established and celiac disease will be diagnosed more quickly. Celiac Patients: free screening of first-degree relatives, federal support for dietary and drug regulations, an improved food supply, stronger local support groups and more funding for celiac research. Dr. Fasano added that such a study, whatever its findings, would end in a win-win situation for everyone. If the study shows that celiac disease is underestimated in this country, patients will benefit as physicians begin looking for the problem with the knowledge that they might well find it. If the study shows celiac disease is indeed rare in the United States, its even more exciting because we will be able to figure out why. Dr. Hamilton, chief of the Digestive Diseases Program Branch at the NIDDK, briefly described the celiac disease research, to date, that has already been funded by the NIH. He said $1.4 million has been granted for such research, adding that over the last five years, we have seen growth in the funding of Celiac Disease. He said he was pleased funding has increased, and felt a lot of work has to be done. Dr. Hamilton ended by saying, Todays meeting will serve as an impetus for a partnership between the National Institutes of Health, academe, and the lay groups to foster more research. He added that it was important for the investigators and support group representatives present at the meeting to get the word out, referring to information about Celiac Disease. These talks were followed by a round table discussion, between the members of the committee and the presenters. Later, audience comment was invited. The committee showed an interest in the current adult nature of the disease, the changing symptoms, current testing methods, and identification of the most critical research needs. Patients who spoke were anxious to let the committee know what they felt were the important concerns in the real world. At the end of the meeting, Dr. Hoofnagle said his division will prepare a short, pithy plan, then present it to Drs. Kagnoff, Murray and Fasano. He noted that the important issues are pathogenesis, delivering the message to physicians, clinical research issues and pediatric health concern. Some Quotes from the Meeting Elaine Monarch: There is a general lack of knowledge, awareness and interest in Celiac Disease among the medical profession. We celiacs can go for years with substantial symptoms but not diagnosis...The cost to the medical community is enormous. Joseph Murray, M.D.: There is more than one gene involved in Celiac Disease. Most Europeans are homogenous. Here we have a mongrelized population. What happens when you mix? How much does it change? Our mongrelized population may be at risk at a later age. Martin Kagnoff, M.D.: The issue of other genes is not at all clear. Like Joe (Dr. Murray), I see adult celiacs. Their time delay to diagnosis is not exaggerated, but what is striking is the lack of knowledge of doctors, even at the University of California. They really are not aware of this disease. Alessio Fasano, M.D.: We receive 10-15 calls a day. The vast majority are self diagnosed. They say, I know more than my gastroenterologist. Peter Green, M.D.: We need to emphasize education of gastroenterologists. At my institution (Columbia-Presbyterian Medical Center in New York City), doctors are not used to looking at the duodenum...We need to educate many levels of the medical community and tell them, If you dont recognize something, take a biopsy. Sue Goldstein: Im concerned about the people who have not yet been diagnosed and the reasons why a physician wont consider Celiac Disease. It all boils down to, its rare and you cant have it. In addition to the speakers, the following were among those who attended: Phyllis Brogden, celiac, founder and chairperson of the Greater Philadelphia Celiac Sprue Support Group. Winnie Feldman, celiac, Celiac Disease Foundation Kenneth Fine, M.D., gastroenterologist/ researcher at Baylor University Medical Center in Dallas. Al Fornace, M.D., celiac, National Cancer Institute Sue Goldstein, celiac, founder and advisor, Westchester Celiac Sprue Support Group Peter Green, M.D., clinician/researcher at Columbia-Presbyterian Medical Center in New York City. Joanne Hameister, celiac, former chairperson, Western New York Gluten-Free Support Group Ivor Hill, M.D., clinician/researcher at Bowman Gray School of Medicine, Winston-Salem, North Carolina. Beth Hillson, celiac and proprietor of the Gluten-Free Pantry. Karoly Horvath, M.D., clinician/researcher at the University of Maryland School of Medicine in Baltimore. Marge Johanamen, celiac, CSA Kentucky state coordinator Pam King, University of Maryland Bob Levy, Celiac Research Foundation Ruth Levy, spouse Jax Lowell, celiac and author of Against the Grain Elaine Monarch, celiac, founder and Executive Director of the Celiac Disease Foundation Selwyn J. Monarch, Board of Directors, CDF Diane Paley, celiac, governing board CSA/USA Michelle Pietzak, M.D., pediatric gastroenterologist at Childrens Hospital, Los Angeles Connie Tur, celiac, president Greater Louisville Celiac Sprue Support Group
  5. Summary prepared by Mardena Waller Here is the Summary on the Bioengineered Foods and Celiac Awareness meeting February 24, 2001 at Caltech, sponsored by CDF - Burbank, Glendale, Pasadena Connections Group. Pasadena (CA) Wild Oats provided free gluten-free foods, and is a stand-out, and nearly stand-alone, market promoting education on gmo-free foods. Let them know you appreciate what they are doing, and tell them you support them. Ask them for a copy of Genetically Engineered Foods - Are They Safe? (Scientists explain health and environmental risks.) Heres an example of what Marshall Crostowski cautioned: Question #1: Are biogeneticists working to reduce or eliminate gluten proteins adversely affecting celiac suffers? Short Answer: Glutens are mainly found in wheat and the related cereals barley, rye and triticale and are important components not only in baked goods but also in a large number of processed food, medicines and cosmetics. Most of the current genetic modifications are to increase the quantity and quality of gluten and to introduce wheat gluten genes into other crops such as barley, maize, sorghum, tobacco, and perhaps rice. There may be some research in Europe toward eliminating or neutralizing wheat gluten or the bodys immunological reaction to it. Gluten Biotech Watch recommends when you e-mail food companies asking about ingredients, tell them you dont want gmo foods, and ask them to go (and label) gmo/gluten-free! Groups and individuals can support companies that do, boycott companies that dont. Make some noise! To help, E-mail GBW at noyodelling@yahoo.com (we DO have a sense of humor!). Robert Jeffers, Ph.D., and Marshall Crostowski will lead GBW to monitor gmo/gluten research.
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