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Celiac.com 10/04/2016 - Several years ago, Dr. Levinovitz contacted me by telephone, asking if he could interview me then, and in subsequent calls, for a book he was writing about gluten consumption. Assuming he, as an academic employed by a university, had an open mind, I was happy to share my own anti-gluten paradigm and the sources of my angst about these harmful foods. Dr. Levinovitz mentioned that he was involved in religious studies, but since I had earned my doctorate in the field of Education, I didn't feel any particular concern about answering his questions or his qualifications to write about gluten. As the interviews proceeded (he called back for further information and/or clarification at least once more but I think it was twice) I was most anxious to help with his project as I see gluten as a food source that fosters a great deal of illness. Because he used a poor, static laden Internet phone (VOIP) for these interviews, I missed much of what he was saying, but when I got the gist of his questions, I did my best to answer as fully and honestly as I could. However, when I mentioned that several of my former students had benefitted academically from excluding gluten from their diets, he wanted their names and contact information. That is when I began to feel uneasy. I told him that I would get back to him with that information if my former students were willing to be interviewed. After some thought, I decided that I would not expose these people to Dr. Levinovitz's questions without their prior permission and without a clear understanding of what he was trying to accomplish. He was quite forthcoming when I asked for some specifics about his book project. He said that he planned to attack the whole gluten-free "fad". He said that he saw it as silly and unscientific. Please remember that I'm paraphrasing something that was said several years ago, over a poor telephone connection, so I am open to correction on the specific words he used, although his meaning was crystal clear. I realized that he was determined to undermine much of the work I had done to sound the alarm about the human health hazards posed by gluten consumption. I speculated aloud that he had used the VOIP to make it more difficult for me to detect his duplicity when not telling me what his book project was about during that first call when he asked to interview me. I ended the call and did not respond to the two phone messages he subsequently left for me. He hadn't lied. He just hadn't told the whole truth. He claims, in his book, that exaggeration or distortion is a lie when it comes to science (p. 18). What is it when the distortion is aimed at getting an interview? Is that a lie too? I don't know. On the other hand, readers of his book will not suffer any confusion about its author's bias. The title gives adequate forewarning. He begins with the anti-MSG movement, which he describes in detail, beginning in 1968 and extending to a 2013 edition of a reference book where MSG is exonerated as a harmful additive, except in "rare" cases. The implication is clear. Americans condemned and avoided this Japanese flavor enhance for a period of 45 years without what Dr. Levinovitz considers to be good reason. Perhaps some Americans continue to avoid MSG. Dr. Levinovitz says that "Today, food allergy experts believe the overwhelming majority of reactions to MSG are psychological, not physiological." (1 p. 4) I saw this type of statement repeatedly when reading his book. Dr. Levinovitz makes sweeping generalizations for experts in "food allergy" and other such specialist practitioners without any apparent desire to provide a source for these statements of opinion. If his approach is correct, my training has me suffering under the faulty illusion that citing sources is a very important part of science. But "what," you may ask, "does MSG have to do with gluten?" Well, it seems that Dr. Levinovitz wants us to conclude that the anti-MSG fad is the same as the shift away from eating gluten grains. He also tells his readers a story about Horace Fletcher and his "theory of mastication," in which a low protein diet is consumed, chewing the food hundreds of times. This, according to Levinovitz, was what led Fletcher to make claims of weight loss and improved health. Levinovitz names several prominent individuals who followed Fletcher's prescription. Then, Dr. Levinovitz discusses epidemiology. Quoting an authority on the subject, who attributes the causal connection of lung cancer to smoking to this type of study. This authority also states that it is exceedingly difficult to establish "credible linkages" in these studies. There is a very good reason for that. Epidemiology may have pointed researchers at smoking as a candidate for causing lung cancer, but this kind of study cannot be used to establish causal relationships. That approach to dietary research is a major source of the many dietary misconceptions that Dr. Levinovitz decries. Levinovitz fails to explain just what epidemiology is. It is the study of correlations. During my first year of university, in the 1960s, I was taught that "correlation ‰ causation". This means that simply because two things happen at the same time and place does not mean that they are linked in a causal relationship. For example, drowning deaths can be shown to rise and fall with ice cream sales, and victims of auto accidents usually wear white underwear. Does that mean that ice cream causes drowning deaths? Or that white underwear causes car accidents? Most of us recognize these as foolish claims. Yet that is the type of study that is at the very heart of the epidemiology or "science" that Dr. Levinovitz offers his readers under the heading of "What Real Experts Say about Gluten". He claims that "..... after I reveal the myths and superstitions behind fears of gluten, fat, sugar, and salt, you will be less afraid of these vilified foods - and food in general." (1 p.22) He also says that: "..... exaggeration in science is nothing less than a lie" (1 p. 18). Lest you begin to fear that Dr. Levinovitz becomes more timid as the book progresses, the first sub-heading in chapter two is "The Gluten Liars" (1 p. 23). He very briefly explains that there are about one percent of Americans, or about 3 million have celiac disease and only 17% have been diagnosed. Thus, 2 and 1/2 million Americans with active celiac disease are, as yet, undiagnosed. He goes on to say that "a slightly larger number of Americans" have a condition called non celiac gluten sensitivity, but says that this malady or set of maladies is a "matter of considerable debate". Yet some of the world's foremost experts in gluten sensitivity research (2, 3) publishing in a wide array of journals, have estimated that between 0.5% and 6% of Americans have non celiac gluten sensitivity (2, 3). They define it as a condition in which the person's innate immune system reacts to gluten and causes symptoms similar to those seen in celiac disease. Although it defines a range, it is a number that could stretch to something north of 18 million individuals in the USA alone. Where I come from, that's more than just "a slightly larger number". As Dr. Levinovitz repeatedly admonishes, 'remember, in science, any exaggeration is a lie' (1 p 18). But there's more. Levinovitz acknowledges celiac disease (he is unclear about the diagnostic criteria) and non celiac gluten sensitivity (NCGS) diagnosed on the basis of innate immune reactions to gluten, but he really is missing quite a few people who are gluten sensitive and would, and sometimes do, benefit from a gluten free diet. For instance, when IgG antibodies against gliadin are measured, they show that 10% to 12% of the population is mounting an identifiable, measurable immune reaction to gluten grains. However, these findings are non-specific, so they are not popular with doctrinaire writers such as Dr. Levinovitz. There is also a sub-group of people with schizophrenia who show an immune reaction to transglutaminase 6, another grain-related reaction that is also implicated in some brain disorders (3). Dr. Levinovitz presents both Grain Brain by David Perlmutter, M.D., and Wheat Belly, by William Davis, M.D., as irresponsible and alarmist. He then claims that reading such books can "make people physically and mentally ill". That claim falls well short of the scientific standards set by these two anti-grain authors. Levinovitz apparently doesn't see any harm in his sensationalist rhetoric attacking these two physicians for writing within their areas of specialty, yet Dr. Levinovitz's field quite far removed from the laboratory. There is something terribly incongruent here. But what, exactly, does Levinovitz have to teach us about science? He wants us to listen to statements he attributes to several authorities. For instance, he quotes Dr. Stefano Guandalini, as an expert in nutrition, saying that the gluten free diet "is not a healthier diet for those who don't need it" p. 29 and later in the same paragraph, Guandalini is quoted as saying "these people are following a fad, essentially" but the reader is left wondering if Dr. Guandalini defined who does or does not need the diet? Such selected quotes can sometimes fail to accurately communicate the meaning of the speaker's comment. When I conducted an Internet search for this statement along with Dr. Guandalini's name, I found an article from the New York Times in 2013. The statement appeared to be exactly the one Dr. Levinovitz attributed to Guandalini (p. 29). However, in the NYT article, Dr. Guandalini goes on to say "And that's my biased opinion." That small addition makes a huge difference to the meaning of Dr. Guandalini's statement. I had only read to page 29 of The Gluten Lie when I discovered this deception. And Dr. Levinovitz has the nerve to go around calling others liars? He deliberately withheld the part of Dr. Guandalini's statement that qualified it as his own bias. Dr. Levinovitz is certainly teaching us something about gluten lies, but his lessons may not carry the message he wants to disseminate. Levinovitz mentions me in his acknowledgements. At the time of the interview, I told him repeatedly that I had earned a doctoral degree in Education, shortly after the publication of Dangerous Grains. Yet he represents me as having gone back to university to get a Master's degree. I had already accomplished that well before the time Dangerous Grains was published. I now wonder if he made this omission intentionally, especially given his other "oversights" outlined above. He also mentions me at several points in his book. He does grant that undiagnosed celiac disease in connection with fibromyalgia, irritable bowel syndrome, diabetes, atopic eczema, and "other related conditions." p. 43 But he insists that only those with these conditions in the context of undiagnosed celiac disease will benefit from a gluten free diet. That's a pretty strong statement. It appears that Dr. Levinovitz has not experienced the challenges of getting appropriate testing for celiac disease, so he doesn't understand. Perhaps he missed all the twists and turns that researchers have experienced on their way to choosing villous atrophy as the defining characteristic of celiac disease? He may not realize that the "gold standard" intestinal biopsy was a retrofit added to the diagnostic criteria for celiac disease to counter the widespread resistance to Dr. Dicke's claim that dietary gluten was the cause of celiac disease. Gastroenterologists simply wouldn't believe that gluten could cause celiac disease without some rigorous testing that ultimately excluded many of the folks who were previously diagnosable with this ailment, many of whom died from it. So the diagnostic criteria began with a constellation of gut symptoms, then it relied on an intestinal biopsy showing damage that was reversed by a gluten free diet. Now, those who have the same symptoms, which also respond to a gluten free diet, and who might previously been diagnosed with celiac disease, are now thought to have non-celiac gluten sensitivity. The rude dismissal of Dr. Dickie's ideas by American gastroenterologists, signals a dynamic in science that was originally outlined by Thomas S. Kuhn, which Dr. Levinovitz seems to have overlooked. Kuhn's book, The Structure of Scientific Revolutions (7) outlines the process by which scientific revolutions take place. To oversimplify and paraphrase the process, it begins with scientists in that field ignoring the new idea. Then, as it gains credence, the scientists laugh at it. With gaining momentum, the new idea is vigorously opposed. Finally, once widespread acceptance has been gained, the scientists give the impression that they had known this all along. Apparently, Elaine Gottshall wrote two books about gluten. I haven't read them. I have heard of them, and some folks swear by them. I don't know about the quality of information she provides. But I know that the information I provided in Dangerous Grains was accurate and it was mostly drawn from the peer reviewed medical and scientific literature, and supported by personal anecdotes from individuals on the celiac listserv. Further, every one of the more than 200 correlations between celiac disease and other ailments was drawn directly from the peer reviewed medical literature. Yet, Dr. Levinovitz lumps us together, saying that "Gottshall and Hoggan deserve our sympathy....." and in the next paragraph: "Sure, they distort the evidence and overstate the dangers of gluten. But is there any harm in that? You bet there is" (1 p. 48). So what did I distort? What did I overstate? Does he base his refutation of our ideas on science? His evidence looks a lot less scientific to me. For instance, he claims that "rumors of illness can make you sick" (1 p.50). So it isn't much of a stretch for him to depict specialist physicians such as William Davis, MD, David Perlmutter, MD, and myself (not a physician) as purveyors of illness. Dr. Levinovitz's "science" is made up of the personal bias of Dr. Guandalini, as quoted in the New York Times, gossip from an endocrinologist, more personal opinions from scientists, consensus opinions, and even some opinion statements published in medical journals. For instance, he quotes Jennifer Thomas, a professor of psychology at Harvard Medical School as saying "There are no studies, but anecdotally we see this all the time". She is then quoted as saying "Of course most of my patients are reading these types of books and it definitely concerns me. People can't typically stick to these rigid diets" (1 p. 54). So, if there aren't any studies are we supposed to accept her pronouncements instead? And what harm do these rigid diets do if people can't stick to them? Dr. Thomas does grant that "Eating disorders have been around, with or without these food fads, But I still believe that these diets can be a gateway to an eating disorder, and that they can help you maintain it" (1 p. 55). If there aren't any studies, what does she base this belief on? Isn't this the very heart of Levinovitz's argument? Doesn't he say that we should use science, not personal beliefs, to inform our views about diet? Then Dr. Levinovitz attacks Dr. Robert Lustig, MD, an endocrinologist. Levinovitz quotes, in his chapter about sugar, gossip from another, nameless endocrinologist who calls Lustig "extreme and opinionated" (1 p.94). Perhaps he is. I don't know Dr. Lustig. However, I do know that Dr. Levinovitz has presented this gossip as "evidence" to further his attack on a group of not just physicians, but specialist physicians who have conducted studies and have done extensive work in their specialty fields. Levinovitz relies primarily on epidemiological studies (the ones that can be used to blame drowning on ice cream sales) expressions of personal bias, published opinion statements, and consensus opinions. I believe that Dr. Levinovitz should attack any idea that he believes to be faulty. I believe that he is entitled to believe whatever he believes and shout it from the rooftops if he wishes. But I hope that his readers recognize that he needs more than personal opinions, gossip, sweeping generalizations, and the hyperbole he accuses others of wielding to effectively counter the work of dedicated people who have found answers for themselves and are trying to share them with others. His attack on salt misses the more important point that we should be consuming sea salt, not just sodium chloride, to get the salt taste and the nutritional benefits of salt without the possible hazards of too much sodium for those who are sodium sensitive. Are there other deceptions in The Gluten Lie? Perhaps. Is there anything of value here? I don't know. I think that we all need to take more responsibility for our own health. I don't know how most of us can do it through reading peer reviewed research articles. They are available but difficult to read without a strong educational background, especially in statistics. Dr. Levinovitz seems like a nice enough fellow except for his tendency to do exactly what he criticizes me and others for... hyperbolizing and twisting the facts to fit his own narrative. He may even have good intentions. It's hard to say. Although his omissions are misleading, I'm not sure whether he really means to mislead, or if his personal bias is so powerful that he is confused about the difference between gossip and evidence; the difference between opinion and data, and; the difference between epidemiology and the various other forms of research designs that can be brought to bear on questions about human nutrition. Whatever the source of his views on the gluten free diet, there doesn't seem to be much actual scientific insight there. Sources: Levinovitz A. The Gluten Lie And other myths about what you eat. Regan Arts, 65 Bleeker Street, NY, NY 2015. Catassi C, Bai JC, Bonaz B, Bouma G, CalabrÃ² 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, VÃ©csei A, Volta U, Zevallos V, Sapone A, Fasano A. Non-Celiac Gluten sensitivity: the new frontier of gluten related disorders. Nutrients. 2013 Sep 26;5(10):3839-53. Lebwohl B, Ludvigsson JF, Green PH. Celiac disease and non-celiac gluten sensitivity. BMJ. 2015 Oct 5;351:h4347 Cascella NG, Santora D, Gregory P, Kelly DL, Fasano A, Eaton WW. increased prevalence of transglutaminase 6 antibodies in sera from schizophrenia patients. Schizophr Bull. 2013 Jul;39(4):867-71. Leonard MM, Vasagar B. US perspective on gluten-related diseases. Clin Exp Gastroenterol. 2014 Jan 24;7:25-37. http://well.blogs.nytimes.com/2013/02/04/gluten-free-whether-you-need-it-or-not/?_r=0 Kuhn Thomas S. The Structu5re of Scientific Revolutions. University of Chicago. 1962. Aziz I, Lewis NR, Hadjivassiliou M, et al. A UK study assessing the population prevalence of self-reported gluten sensitivity and referral characteristics to secondary care. Eur J Gastroenterol Hepatol 2014;26:33-9.
I've now been gluten-free for over 20 years, yet I've never broken down and purchased a bread machine, nor have I ever used one. It should go without saying that I am also eating very mediocre gluten-free bread. Recently I was given the opportunity to review Panasonic's new SD-YR2500 Automatic Gluten-Free Bread Maker. This is the first bread maker made by Panasonic specifically for making gluten-free breads. Needless to say, I was very excited to finally get to test out this machine and discover why they are so popular among those who are on a gluten-free diet. The machine arrived undamaged, which was no surprise given how well it was packaged—it was double boxed, and the inside display box included molded Styrofoam that protected the machine very well. It took only a few minutes to unpack and set it up. My next step was selecting a recipe to use—I went with one that has been on Celiac.com for many years, and is highly rated. I decided to substitute the different flours used in the recipe with Bob's Red Mill 1-1 Baking Flour, as I didn't have the many different flours listed in the original recipe. Basically I used a highly modified version of a recipe that I've never tried before, and made it in a bread machine that I've never used before—how well could this possibly turn out, right? I hope you are surprised to learn that, all things considered, it was easily the best gluten-free bread I've ever made, and was light years beyond the packaged stuff I've been eating for years (the company shall remain nameless, but you're probably eating it too!). I think the scientific control that the bread machine offers, for example, the timed mixing and kneading processes, the long rising time and the perfectly even baking temperature help make even a total amateur baker like myself look like a professional. My experience with this gluten-free bread machine left me with confidence and the feeling that I can easily improve on an already improvised recipe, and have fun experimenting with different versions of it (I'm going for a rosemary loaf next time!). Overall Panasonic's SD-YR2500 was very easy to use, and the nice thing about this bread machine is that it will do all of the hard work for you. Just add the ingredients select the ideal setting and turn it on. You'll never get sore kneading bread by hand again. My first experience with Panasonic's SD-YR2500 was an excellent one, and it made me wonder: Why have I waited so long for excellent gluten-free bread? For more info visit their site.
Celiac.com 06/03/2010 - Clinical presentation of celiac disease can vary considerably from patient to patient. Most patients with celiac disease present atypical symptoms. Moreover, most patients who present abdominal symptoms in primary care do not have celiac disease, and so diagnostic tests for celiac disease are not necessary and should be avoided. A team of researchers recently conducted a systematic review of diagnostic testing for celiac disease among patients with abdominal symptoms. The team included Daniëlle A. W. M. van der Windt, PhD; Petra Jellema, PhD; Chris J. Mulder, MD, PhD; C. M. Frank Kneepkens, MD, PhD; and Henriëtte E. van der Horst, MD, PhD. Their article appears in the Journal of the American Medical Association. The goal of the research was to review and summarize evidence on the performance of diagnostic tests for spotting celiac disease in adults who present abdominal symptoms in primary care or similar settings. To obtain initial data, the team search MEDLINE (from January 1966 through December 2009, and EMBASE from January 1947 through December 2009. They also conducted a physical search of references for additional relevant studies. The team chose cohort or nested case-control diagnostic studies which included adults presenting non-acute abdominal symptoms, which featured celiac disease prevalence of 15% or less, and in which the tests included gastrointestinal symptoms or serum antibody screens. Two independent reviewers conducted studies tool and data extraction. They then calculated sensitivities and specificities for each study and computed pooled estimates using bivariate analysis where there was clinical and statistical homogeneity. In all, the team included sixteen studies encompassing 6085 cases in their review. Specificity, sensitivity, and confidence intervals for predicting celiac disease varied with abdominal symptoms. For patients presenting with classic diarrhea, for example, predictive sensitivity ranged from 0.27 to 0.86, while specificity ranged from 0.21 to 0.86. Pool estimates for 8 studies on IgA antiendomysial antibodies were 0.90, with a 95% confidence interval [CI] (0.80-0.95) for sensitivity and 0.99, with a 95% CI (0.98-1.00) for specificity, with a positive likelihood ratio [LR] of 171 and negative LR of 0.11. Pool estimates for IgA antitissue transglutaminase antibodies (7 studies) were 0.89, with a 95% CI (0.82-0.94) and 0.98 at 95% CI (0.95-0.99), respectively, with a positive LR of 37.7 and negative LR of 0.11. IgA and IgG antigliadin antibodies showed variable results, especially for sensitivity, which ranged from 0.46-0.87 for IgA, and from 0.25-0.93 for IgG. One recent study using deamidated gliadin peptides showed good specificity (0.94), but the target population offered limited supporting evidence. For adults who present abdominal symptoms in primary care or other unscreened settings, IgA antitissue transglutaminase antibodies and IgA antiendomysial antibodies offer high sensitivity and specificity for diagnosing celiac disease. SOURCE: JAMA. 2010;303(17):1738-1746. doi:10.1001/jama.2010.549
Celiac.com 02/21/2011 - After reading this new book by celiac nurse specialist Shelly Stuart, RN, what shines through above all is her true understanding of the complex nature of gluten-related illnesses, and her heartfelt compassion for patients who suffer from them. Her book is extremely well researched and documented. As a registered nurse and celiac herself, Ms. Stuart is able to use her strong patient teaching experience to clearly educate the reader about even very complicated subjects. She provides excellent explanations of leaky gut and the pathophysiology of celiac disease, and she is one of the first clinicians to write in-depth about non-celiac gluten intolerance. Importantly, she makes the point that immune mediated reactions can and do occur in non-celiac gluten intolerance, and backs this up by citing clinical evidence. Another important point made concerns pancreatic insufficiency, which can accompany celiac disease, but few know that this condition can persist even after diagnosis and transition to a gluten-free diet. Her discussion of the many, varied health disorders associated with celiac disease is very comprehensive. One of the most compelling aspects to “Gluten Toxicity” is the many important questions asked regarding the future of clinical research. Ms. Stuart makes it crystal clear that we need to know much more about the physical and mental health effects of gluten-related illness. This can only come about by increasing awareness both within the medical and research communities, and throughout each of our communities. We must all become advocates for greater testing and more accurate diagnosis. Shelly’s personal story, woven throughout the book, adds interest and a personal appeal, but never attempts to substitute anecdote for the hard science she relies on throughout the book. In fact, at first glance, the book seemed rather technical to me, and I thought it would be best-suited for clinicians, but after reading through to the end, I changed my mind. This is an excellent resource, offering really insightful and accurate explanations for anyone suffering from or attempting to treat gluten related illness. Some of you may be familiar with Cleo Libonati, RN, and the book “Recognizing Celiac Disease”, which was one of the first books to comprehensively make connections between a vast array of medical conditions and celiac disease, and back them up with clinical research citations. Shelly Stuart’s book goes quite a bit farther, to discuss the pathophysiology, symptoms, and diagnosis of a huge number of health conditions associated with celiac disease and also non-celiac gluten intolerance.