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Jefferson Adams posted an article in Additional Celiac Disease ConcernsCeliac.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 07/24/2017 - Are many non-celiac gluten-free eaters actually treating unkown 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 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!
Jefferson Adams posted an article in Conferences, Publicity, Pregnancy, Church, Bread Machines, Distillation & BeerCeliac.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