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Celiac.com 02/15/2017 - There's been a lot of talk in the media and among researchers about the large numbers of people who adopt a gluten-free diet without a celiac disease diagnosis. Many of these dieters are regarded with a bit of suspicion. The question areises as to whether gluten was causing them any problems that could be improved by a gluten-free diet. Most have been regarded as simple fad dieters. Well, what if the gluten-free fad isn't such a fad after all? What if many of those without celiac disease who eat gluten-free are actually gaining some heretofore undiscovered benefits? That's the intriguing possibility raised by the latest study from the Mayo Clinic's Dr. Joseph Murray, and his colleagues at the forefront of research in celiac disease and gluten intolerance. Dr. Murray's colleagues and coauthors include Rok Seon Choung, MD, PhD, Aynur Unalp-Arida, MD, PhD, Constance E. Ruhl, MD, PhD, Tricia L. Brantner, BS, and James E. Everhart, MD. Today, according to the team's research, published this month in the journal Mayo Clinic Proceedings, some 3.1 million Americans currently avoid gluten without a celiac diagnosis for celiac disease. That number tripled between 2009 and 2014, while the number of cases of celiac disease stayed flat. When we designed this study 10 years ago, we didn't think to ask why people avoid gluten, because no one avoided gluten without a celiac diagnosis, said Murray. So, could these folks be avoiding gluten for legitimate health reasons? Very possibly, says Murray. There's definitely growing evidence that severe non-celiac gluten sensitivities exist. Patients with these sensitivities frequently experience intestinal problems, as well as fatigue, stomachaches and a sense of mental fogginess. And while researchers don't understand the underlying mechanism, clinical studies have shown that a gluten-free diet does relieve symptoms in many gluten-sensitive non-celiac patients. It's possible that gluten may play some role in inflammation, though this is unproven. It's also possible that non-celiacs who cut gluten from their diet might also cut out other irritants and allergens. The researchers call for further investigation of long-term health consequences of a gluten-free diet in people without celiac disease. How about you? Do you or someone you know not have celiac disease, but avoid gluten? Source: Mayo Clinic Proceedings

Celiac.com 07/24/2017 - Are many non-celiac gluten-free eaters actually treating undiagnosed medical conditions? Is the gluten-free movement less a fad than we imagine? Currently, about 3 million Americans follow a gluten-free diet, even though they do not have celiac disease. Known colloquially as "PWAGs," people without celiac disease avoiding gluten. These folks are often painted as fad dieters, or hypochondriacs, or both. Call them what you will, their ranks are growing. According to a study in the journal Mayo Clinic Proceedings, the number of PWAGs tripled from 2009 to 2014, while the number of celiac cases stayed flat. A new study from the Mayo Clinic supports these conclusions. The study derived from data gathered in the National Health and Nutrition Examination Survey, as well as serological tests. There is also a growing body of data that support the existence of non-celiac gluten sensitivities, though the evidence is not conclusive. Moreover, researchers really don't have any idea how many non-celiacs on a gluten-free diet may have legitimate reactions to gluten. The phenomenon has emerged in the past five years in medical literature. For a long time, researchers just assumed that only people with celiac disease would eat a gluten-free diet. About a decade ago, when research into celiac disease and gluten-free dieting began in earnest, says Joseph Murray, a celiac researcher at the Mayo Clinic and an author of the new research, researchers "didn't think to ask why people avoid gluten. When we designed this study 10 years ago, no one avoided gluten without a celiac diagnosis." The latest research by Murray and his colleagues showed that the total number of celiac cases leveled off in the last few years, while more non-celiacs began to avoid gluten for different reasons. Researchers still aren't sure what's driving the trend, and whether it will continue. Part of the increase is doubtless to growing awareness of gluten sensitivity. However, Benjamin Lebwohl, the director of clinical research at Columbia University's Celiac Disease Center, estimates that more than half of the 3.1 million PWAGs noted in this latest study have legitimate gluten sensitivity. "An increasing number of people say that gluten makes them sick, and we don't have a good sense why that is yet," Lebwohl said. "There is a large placebo effect — but this is over and above that." Non-celiac patients with gluten sensitivity often complain of symptoms similar to those of celiacs, such as intestinal problems, fatigue, stomachaches and mental fogginess. And while researchers don't know the reason, clinical studies have shown that these symptoms are often relieved by eliminating dietary gluten. One theory that is gaining some credence is that these people may be sensitive to other irritants, such as FODMAPS, a class of carbohydrates shown to cause gastrointestinal symptoms found in wheat, milk, onions and cheese. Look for more studies into this topic, as researchers seek to nail down answers about celiac disease and gluten-sensitivity, and similar symptoms in non-celiacs. Meantime, the number of people who suspect they have non-celiac gluten sensitivity, and who seek improvement in their symptoms by eliminating gluten from their diets, continues to grow. Source: DailyTribune.com

Celiac.com 06/07/2019 (originally published 07/12/2010) - Most of the gluten-free community is thrilled by the rapidly increasing public and professional awareness of our diet and the increasingly wide range of gluten-free choices available to us in supermarkets, health food stores, and even in restaurants. These are exciting times for those of us who avoid gluten. However, there are a few problems associated with the increasing public profile enjoyed by our diet. Members of the Press, and some health care professionals who have not kept up with the research, continue to voice false and faulty perceptions of our diet. The net result of these misinformed, often authoritative, statements, cautions, and prohibitions is that many individuals who might benefit from the diet are dissuaded from trying it or are encouraged to abandon it prematurely. While few health care professionals (there are some) contest compliance with a gluten-free diet for those with celiac disease or dermatitis herpetiformis, many more are resistant to non-celiac gluten sensitivity as a cause to follow the diet. Others assert that the gluten-free diet lacks the necessary vitamins, minerals, and calories to sustain good health. Still others decry the lack of fiber in many gluten-free diets or they claim that it lacks the complex carbohydrates provided by gluten grains or alternative whole grains. One prominent gastrointestinal researcher even advocates consumption of breakfast cereals that contain malt flavorings. He asserts that our diet is so restricted that patients may abandon the diet altogether if they are not given the latitude to consume small amounts of gluten. Similarly, foods made from oats are increasingly advocated as “safe”, while the research is less than conclusive on this issue. To add to the confusion, many health food clerks and naturopaths are advocating spelt and kamut as being “safe” for those who avoid gluten. Over the past year, there has been a rash of publications in the popular press that depict the gluten-free diet as a passing fad because some individuals have been using it to lose weight. This cornucopia of misinformation is more than an inconvenience for people who follow a gluten-free diet. In some cases, their health is at risk. In other cases, dismissals or misinformation will lead them back to eating gluten and all the health hazards it poses. Still others, many of whom already feel marginalized by their diet feel discredited and dismissed. Let’s examine each of these claims in light of the peer reviewed medical literature: An overwhelming majority of researchers recommend a gluten-free diet for those who suffer from dermatitis herpetiformis. Many researchers consider dermatitis herpetiformis to be a skin manifestation of celiac disease. To that end, authoritative reports in the research literature recommend treatment with a strict gluten-free diet and the use of Dapsone as a drug that can offer the patient temporary relief while the diet takes effect (1). However, one drug usage evaluation of Dapsone makes no mention of the diet (2). This is congruent with the recommendations of many dermatologists who believe that Dapsone is the only realistic treatment for dermatitis herpetiformis and that the gluten-free diet is a foul-tasting, alternative that will be eschewed by most patients. I have listened to one such dermatologist spout his condemnation of the diet in a presentation to a group of celiac patients. He went on to indicate that those who comply with the diet are members of a radical minority who are driven by fanatic zeal (3). Although the presentation took place in 1999, I frequently hear from people with dermatitis herpetiformis who have more recently been offered similar medical advice by their dermatologists. Only a couple of weeks ago, I heard from a lady I had encouraged to seek testing for celiac disease and non-celiac gluten sensitivity. She quoted the gastroenterologist she visited for an endoscopy, etc. as saying “Either you have Celiac Disease or you don’t, this office does not believe in those other tests.” This is a blatant denial of a report from Ireland in which early mortality among those with gluten sensitivity has been found to be greater than in the general population (4). Similar findings have been reported from Sweden (5). In a comment on these publications, Dr. Peter Green wrote (in part) the following: Until recently, gluten sensitivity has received little attention in the traditional medical literature, although there is increasing evidence for its presence in patients with various neurological disorders and psychiatric problems. The study by Ludvigsson and colleagues reinforces the importance of celiac disease as a diagnosis that should be sought by physicians. It also suggests that more attention should be given to the lesser degrees of intestinal inflammation and gluten sensitivity (6). Those who wrongly impugn the gluten-free diet as nutritionally inadequate have been with us for some time. Our culture seems to have developed an almost religious fervor about the health benefits of grains, particularly whole grains, yet the evidence to support such claims is sparse at best. Yes, they do contain some vitamins and minerals that are valuable to human health, but these same nutrients are abundantly available elsewhere. In fact, despite our very long-standing tradition of valuing various dietary carbohydrates, reductions of carbohydrate consumption may well lead to significant health improvements (7). There are several cultures, most notably the Inuit, that survived and thrived for millennia eating diets that were substantially free of carbohydrates and completely bereft of grains (8) and Europeans who adopted their life ways continued to enjoy robust health (8). Demonstrations of this dynamic were closely monitored and reported by physicians at New York’s Bellevue as early as 1929 when two explorers, V. Stefansson and K. Andersen were reported to have improved or maintained their good health during more than one year of eating a diet comprised of raw and cooked meat only (9, 10). Surely a diet that excludes only gluten grains is not lacking in necessary nutrients if an exclusively meat diet provides adequate nutrition. It is less than rational for physicians to recommend gluten-free diets that allow breakfast cereals that contain malt flavorings. This is a little like recommending salted peanuts as part of a salt free diet. One of the physicians recommending malt flavorings to celiac patients is also a very vocal advocate of including oats in the gluten-free diet. Oats have long been a contentious issue in the gluten-free community. Most members of the gluten-free community are aware of the debate. Some opt to eat oats while others prefer to avoid them, and some report that they experience symptoms of gluten ingestion when eating oats. Presumably to clear up this issue, the professional advisory board of the Canadian Celiac Association published a position paper in the Canadian Journal of Gastroenterology in 2007 (11). Like many other such publications, this group acknowledges that “There are case reports of individuals with celiac disease relapsing with the consumption of pure uncontaminated oats.” They also acknowledge that “When adding oats to the diet, individuals may experience a change in stool pattern or mild gastrointestinal symptoms, including abdominal bloating and flatulence. These symptoms should resolve within a few days.” For those of us who spent years in search of an accurate diagnosis, such statements are fraught with problems. First, many celiacs are asymptomatic. How can we know whether oats are really safe? Endoscopies sometimes fail to reveal celiac-associated intestinal damage, when too few intestinal biopsies are taken due to patchy intestinal lesions (12). This clearly demonstrates that one or a small series of biopsies is not adequate to ensure that oats are not causing intestinal damage. Please recall that this group acknowledges that some celiacs do develop intestinal damage due to oats ingestion. We don’t know how many are missed because of “patchy lesions”, and even those who are supposedly safe eating oats must expect celiac-like symptoms for an initial period of eating them. Of course, no consideration is given to the possibility that those with non-celiac gluten sensitivity may also be harmed by oats. I would want a stronger argument from a car salesman than the oats advocates are offering in this paper. When it comes to my health, these assertions are just too flimsy for me. There are a number of reports of celiac patients who cannot tolerate oats (13, 14, 15, 16). In a recent conversation with Dr. Rodney Ford, he suggested that the number of celiacs who need to avoid oats is about 1 in 20. The challenge here is to ensure that we are not the twentieth celiac. And all of this ignores the issue of cross contamination. How many places do you know where they grow oats and only oats? Do they cultivate, seed, harvest, transport, and mill it in equipment that only handles oats? If not, then it is almost impossible to avoid getting some contamination from other, unquestionably gluten-containing grains. The gluten-free diet is a passing fad. Over the last year I read a number of articles published throughout the USA and the UK depicting the gluten-free diet as a silly fad. These articles could only have been written by journalists who have not followed the diet themselves. If they had experienced the inconvenience, added expense, and the social marginalizing that usually accompany the diet they would be much less likely to write such drivel. Some of these writers decry the use of a gluten-free diet as a weight loss strategy. Perhaps they haven’t noticed that we are in the middle of an obesity epidemic, and if the gluten-free diet helps people to lose weight, I don’t understand the objection. Other journalists have suggested that those who have non-celiac gluten sensitivity do not need the diet either. Yet these same people have, according to the only two studies I’m aware of that have investigated this group, a greater risk of early death than those with celiac disease. I don’t know about journalists, but I consider that a pretty good motivation to avoid gluten even in the absence of celiac disease. Perhaps the most egregious statement that is too often made by a variety of health care professionals and parroted by lay people is that the gluten-free diet is “nutritionally inadequate”. This is disturbing and utter nonsense. Most of the world’s populations survived and thrived before Europeans spread across the globe bringing gluten grains with them. Most of that spread has only occurred during the last few hundred years. From the Australian Aborigine to the Inuit of the Arctic, from most of Africa to the Americas, gluten grains are a new food. The suggestion that they are nutritionally necessary, or even important, is to reveal a very deep level of confusion about food, culture, and the evolutionary forces that have shaped human digestive systems. There are, of course, many other common misconceptions about the gluten-free diet. The common preoccupation with fiber ignores recent research data that debunks that myth. Some people imagine that the gluten-free diet must include foods that act as substitutes for the gluten-containing foods we grew up with. There are even some woefully misinformed individuals who advocate kamut and spelt as safe in a gluten-free diet. This is INCORRECT. There is no question that the diet is inconvenient and expensive, but the rest of the above misconceptions range from foolish to dangerous and are often the result of having been socialized into a culture that values gluten grains far beyond any rational understanding of their benefits to those who do not have celiac disease or gluten sensitivity. I am sometimes tempted to suggest that such strong feelings appear more closely akin to the protestations of an addict rather than taste preferences. Such powerful beliefs could be argued to be rooted in the morphine-like properties of gliadorphins , also known as opioids, that are found in all the gluten grains. Sources: Caproni M, Antiga E, Melani L, Fabbri P; Italian Group for Cutaneous Immunopathology. Guidelines for the diagnosis and treatment of dermatitis herpetiformis. J Eur Acad Dermatol Venereol. 2009 Jun;23(6):633-8. Epub 2009 Mar 10. G. Kannan,* J. Vasantha, N. Vanitha Rani, P. Thennarasu, K. Kousalya, P. Anuradha, and C. Umamaheswara Reddy Drug Usage Evaluation of Dapsone Indian J Pharm Sci. 2009 Jul–Aug; 71(4): 456–460. Pappas. Dermatitis Herpetiformis. National Conference, Canadian Celiac Association, Kitchener-Waterloo, May, 1999. LA Anderson, SA McMillan, RGP Watson, P Monaghan, AT Gavin, C Fox, LJ Murray Malignancy and mortality in a population-based cohort of patients with coeliac disease or ‘gluten sensitivity’ World J Gastroenterol 2007 January 7; 13(1): 146-151 Ludvigsson JF, Montgomery SM, Ekbom A, Brandt L, Granath F. Smallintestinal histopathology and mortality risk in celiac disease. JAMA. 2009;302 (11):1171-1178. Peter H. R. Green Mortality in Celiac Disease, Intestinal Inflammation, and Gluten Sensitivity JAMA. 2009;302(11):1225-1226 Pérez-Guisado J, Arguments In Favor Of Ketogenic Diets, The Internet Journal of Nutrition and Wellness 2007 : Volume 4 Number 2 Phinney SD, Ketogenic diets and physical performance. Nutrition & Metabolism 2004, 1:2 Lieb CW, The effects on human beings of a twelve months exclusive meat diet. JAMA, July 6, 1929, 20-22. Stefansson V. “Adventures in Diet.” Harper’s Magazine, November, December, 1935, January 1936 Rashid M, Butzner D, Burrows V, Zakardis M, Case S, Molloy M, Warren R, Pulido O, Switzer C. Consumption of pure oats by individuals with celiac disease: A position statement by the Canadian Celiac Association. Can. J. Gastroenterol 2007; 21(10): 649-651. Green PH. Celiac disease: how many biopsies for diagnosis? Gastrointest Endosc. 2008;67(7):1088-1090. Ellis HJ, Ciclitira PJ. Should coeliac sufferers be allowed their oats? Eur J Gastroenterol Hepatol. 2008 Jun;20(6):492-3. Review. Silano M, Dessì M, De Vincenzi M, Cornell H.In vitro tests indicate that certain varieties of oats may be harmful to patients with coeliac disease. J Gastroenterol Hepatol. 2007 Apr;22(4):528-31. Kilmartin C, Wieser H, Abuzakouk M, Kelly J, Jackson J, Feighery C. Intestinal T cell responses to cereal proteins in celiac disease.Dig Dis Sci. 2006 Jan;51(1):202-9. Lundin KE, Nilsen EM, Scott HG, Løberg EM, Gjøen A, Bratlie J, Skar V, Mendez E, Løvik A, Kett K. Oats induced villous atrophy in coeliac disease. Gut. 2003 Nov;52(11):1649-52.

Celiac.com 12/17/2018 - A 39-year-old woman with possible celiac disease was left brain dead after a dangerous internet “soy sauce colon cleanse” caused critically high levels of salt in her blood, which led to organ failure and death. The medical YouTube channel Chubbyemu, says that the woman, identified only by the initials, CG, arrived at the emergency room with a rapidly deteriorating mental status. Earlier that day, CG had performed a “soy sauce colon cleanse,” a dangerous internet fad in which people drink an entire liter of soy sauce in two hours. CG had been unwell for weeks before the incident. She had begun a diet made up exclusively of white bread and canned fish six months prior, and had lost 11kg, nearly 25 pounds, in the three weeks leading up to the soy sauce incident. Additionally, CG had been recently diagnosed with untreatable paranoid schizophrenia. She suffered from a psychosis that caused her to believe the government had poisoned her. Somewhere online, she read that the soy sauce colon “cleanse” would purge the toxins form her body. There are indications that CG may have suffered from celiac disease. Soon after drinking the highly salt-laden soy sauce her heart began to beat rapidly, according to a person identified only as Bernard, who claims to be a U.S.-based medical doctor, and who runs the popular Chubbyemu channel, which features videos on medical issues like kidney disease and cancer. After resisting all attempts to get her to drink water, CG began to stumble around and and mumble unintelligibly until she collapsed. She was rushed to a hospital and while en route went into cardiac arrest, before being resuscitated. Eventually, though, CG died as a result of acute hypernatremia— extremely high levels of salt in the blood. Bernard believes the woman had undiagnosed celiac disease, which manifested as psychosis and delusional disorder. He adds that a microscopic examination of her cells revealed “marked villous blunting and atrophy”, a common sign of celiac disease. Bernard argued she developed gluten sensitivity, became delusional and was misdiagnosed, and later falling victim to internet misinformation. If that is true, then the story is a sad one, indeed. In any case, the dangers of drinking large amounts of soy sauce or any other salty substance can hardly be overstated. Be very careful and always seek out the advice of a doctor before beginning any type of “cleanse” or “purge” meant to rid the body of “toxins.” See the video on the YouTube Channel Chubbyemu. Read more at: News.com.au

Celiac.com 05/05/2017 - What do you say to someone who doesn't "get" the fact that gluten makes people sick? It's not that people are intentionally callous and uncaring. They simply don't understand that going gluten-free isn't a fad or a choice for most people. This means that all too often when it comes to eating, they are perfectly content to go their merry way and eat whatever they want and if you're with them, well, you'll figure out something to eat. They don't mean to be insensitive jerks, but sometimes they present that way. As many of us have learned, when someone you love has a gluten sensitivity, the response of "it's their problem and it's not my issue" simply isn't good enough. Love means that you try to understand the experience and challenges of the person you care about. Celiac disease and gluten sensitivities are sneaky buggers. They are expert at masking what's really going on. So it's no surprise that parents and loved ones often screw up when it comes to understanding the physical and emotional experiences of someone whose got gluten issues. Maybe we heard about gluten issues, but it's one thing to read information and look at it intellectually as an abstract phenomenon and it's extra hard when you don't know anyone whose had gluten related problems. I grew up with pasta, home-made bread smothered with butter, cookies, and a sense these were comfort foods - not something that could make you deathly ill. No surprise, when my children didn't feel well, I'd pull out the crackers and chicken noodle soup, with a little mac-n-cheese for good measure. The children would snarf them down, and I had a self-inflated sense of motherly pride for having fixed them healing foods. Little did I know that my culinary delights were responsible for giving them GI track upset, migraines, skin problems, and the precursors to Celiac disease. There was no way of knowing back then that autoimmune problems ran on their father's side of the family, since we divorced when they were wee. In fact, most people don't really have their heads wrapped around the autoimmune disease thing at all, because as we say in New England, "it's wicked complicated!" Not knowing, in hindsight, makes the saying "killing them with kindness" take on new meaning. Today the dangers of glutening someone are well-recognized by most people, even if they don't understand all the sheer dynamics of what the cause-and-effects of it are. The problem is, unless you've seen someone writhing in distress from ingesting gluten by accident, your understanding of being glutened remains an intellectual, abstract mental exercise. The difference between knowing about being glutened and the actual experience of it are worlds apart. So if you have a family member, loved-one, colleague, or someone you're responsible to/for (as are teachers, day-are providers), what are you to do to show people with gluten issues that you care? Here are some suggestions. Talk to the person. Really talk with them. Ask them questions about what their experience of being glutened is like. Find out about what they perceive to the be causes of it. Listen to them talk about their emotions and how they feel when they are sick – and how they feel about others who help them or are contributors to their distress. Once they open up, they will likely tell you about things that frustrate them about trying to eat normally, problems they've encountered, and how they have to monitor their lives to avoid getting sick. People with Celiac disease or gluten issues are experts. They will look you in the eye and tell you what it's like in a way that inspires a caring person to pay more attention to what's going on so they can do better not to make someone sick. Inquire what you could do – and not do – that may prevent glutening someone. They will also give you big hints about what to say and do (and what NOT to do). Read. There is a lot of information available about what gluten is, where it is found, what it does to people, and alternatives for it. It's in books, magazines, online websites galore, and even sometimes on television. In our book, Going Gluten Free, we list a bunch of sites for you. Given the large amount of information that's freely available, there is no excuse for not knowing about gluten is, what it does, and how it should be handled so people don't get sick. Take the time to educate yourself about gluten, celiac, what it does, and how to live gluten-free in a harmonious and healthy manner. Others will feel that you genuinely care when you tell them about what you've learned and the information you've accessed! Pay attention. Once you know about glutening people, start paying attention to menus at restaurants, ingredient lists of food products, and what and how food is being served. Even "safe" foods can be cross-contaminated and served in ways that can make someone with gluten sensitivity sick. Sometimes those fixing or serving food aren't as savvy as they coulda-shoulda-oughta be about gluten-free dining. If you go somewhere and the server looks foggy when you ask about their gluten-free options, don't order anything that is remotely questionable. Size up the whole dining ambiance, see if you can get a glimpse at the kitchen, ask if they have a gluten-free menu or policy. If your intuition blinks "danger!", listen to it. Better to be safe than sorry. Be annoying. Many people with Celiac or gluten issues are sweet-hearts and don't want to inconvenience others. So be prepared, when appropriate, to ask questions, push the envelope, and do background check to ensure that your loved one doesn't get glutened. Being able to eat safely is a human rights issue. You are not being annoying by asking questions or demanding that you (or your loved one) are served food that can be consumed without negative outcomes. Others don't have the right to make you sick. It's as simple as that, so learning to stand up for yourself or others is a good practice to get into!