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Celiac.com 10/04/2010 - When Tyler was diagnosed with celiac disease at the age of 18 months, I wanted desperately to talk to a kid––one who could talk––about what it’s like to have celiac disease. Do you feel jipped? Does it make you sad? Do you feel “different” from the other kids?!? I was heartbroken––grief-stricken––I had a long way to go before I would evolve into the cheerleader I hope I’ve become in helping people live––and love––the gluten-free lifestyle. Oh, sure, friends and family told me “it would be okay,” the way friends and family do in tough situations. But I felt they were just placating me––after all, what did they know? They hadn’t even heard of celiac disease before I had explained the diagnosis. And to be honest, I didn’t care much at that time about what adults thought of the situation––I wanted desperately to hear from a kid: “Look at me––I turned out just fine!” That was nearly 13 years ago, and there weren’t any kids who had celiac disease––none that I knew of, anyway. So we blazed our own trail, working hard to approach our unique challenges with optimism each and every step of the way. Recently, I was reminded of the way I felt when Tyler was first diagnosed, when a woman with tears in her eyes approached me after one of my talks. “I know you talk about how we can all learn to live and love this lifestyle, and I appreciate your suggestions for raising happy, healthy, gluten-free kids––but,” she seemed shy and embarrassed to continue, looking at the floor as she asked, “would you mind if I talked directly to Tyler?” But of course! How could I have forgotten? That need to talk to a child who had been through it was so compelling at first––and now Tyler could talk! Sure you can, was my automatic reply, knowing that my 14 (and-a-half) year-old-I-at-least-like-to-pretend-that-everything-you-do-annoys-me son would be less than thrilled to take the call. I would love for Tyler to write an article telling you how celiac disease is no big deal in his life. He did so a few years ago for my first book, “Kids with Celiac Disease,” when he wrote Chapter One: “What it’s like to be a kid with celiac disease,” but that was when he was only ten. That was before he turned into a teenager and had to start pretending not to want to do the things we ask him to do. The truth is that this has never been a big deal for Tyler. We gave him control of his diet from day one, which I believe is crucial. We have always maintained an optimistic, yet realistic approach, with Tyler and his non-celiac but oh-so-supportive sister Kelsie, her being our guiding light in terms of inspiration and positive attitude. One day, a few months after he had been interviewed on a local TV station, Tyler was approached by a woman who attended one of our R.O.C.K. (Raising Our Celiac Kids) parties. I watched with curiosity and felt somewhat protective and guarded as this woman I didn’t know quickly approached him and took one of his hands in both of hers in what seemed to be an affectionate gesture. “Tyler, you have changed my life,” she said boldly. Then 13 years old, he did what most 13-year-old boys might do, and said nothing––shooting an anxious glance my way, looking for guidance, but I was as bewildered as him. She began to get tears in her eyes as she continued. “I’m 65 years old. Three months ago, I was as sick as I could be. I had been to dozens of doctors, and had a list of symptoms a mile long. Everyone thought I was crazy––I even had to quit my job, because I was so sick. I truly wanted to die. Then I saw you on TV talking about celiac disease. I insisted on being tested, and was positive for celiac disease. I’ve been gluten-free ever since, and feel absolutely wonderful.” With that, she gave him a bear hug, and he shot me a glance that I couldn’t read. I’ve learned not to embarrass my kids (well, sometimes I do it intentionally, but that’s another story), so I said nothing, and Tyler went about his business. Several minutes later, Tyler approached me with a beaming smile. “Mom, now I know why you do this! It feels really good to help other people!” He has since decided that he’s blessed to have celiac disease, because it has provided him with an opportunity to reach out and help others––an act that even at his young age he realizes is as satisfying for him as it is for those he helps. Quite a perspective for a teenage boy, if I may brag about him a little! So while I would love for Tyler to write an article about this, those of you who have teenagers understand that it would be easier to teach my dog quantum physics than to have him sit down and write an article––so you’ll have to take my word for it. Thankfully, at this point, Tyler is a happy, healthy, gluten-free young man who thinks a lot more about baseball and his friends than he does about the restrictions of his diet. Other kids, teens, and young men and women I’ve met over the years have been equally optimistic and inspiring. So rest easy, parents––your kids will, in fact, be just fine…and I really do know this!

Celiac.com 02/23/2008 - This week it was revealed that scores of previously unknown files and boxes of other materials pertaining to JFK, Lee Harvey Oswald and Jack Ruby have been discovered in the Dallas County Courthouse. Conspiracy theorists and historians will be particularly eager to have access to these materials, and the life and death of our 35th president will once again be examined in great detail. The reason I mention this news item here is that in the course of my research for my upcoming book on living with celiac disease, I read an article by Columbia University's Dr. Peter H.R. Green in which he chronicled the many illnesses of President Kennedy. Apparently, he suffered from severe and painful medical problems that began in his childhood. Dr. Green writes, "In Kennedy's adolescence, gastrointestinal symptoms, weight and growth problems as well as fatigue were described. Later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine and Addison's disease. Chronic back problems, due to osteoporosis resulted in several operations and required medications for chronic pain. He was extensively evaluated in major medical centers including the Mayo Clinic and hospitals in Boston, New Haven and New York. Among the multiple diagnoses were ulcers, colitis, spastic colitis, irritable bowel syndrome, and food allergies. His medications included corticosteroids, antispasmotics, Metamucil and Lomotil. However it is not clear that his physicians obtained a definitive diagnosis. Review of this medical history raises the possibility that JFK had celiac disease." Wow. That gives one pause, doesn't it? Imagine that this president -- who had access to the finest physicians of the day -- might have suffered from a disease that could have been relieved by a simple change in diet if only the diagnosis had been made, let alone considered. Don't you feel lucky that your physicians have access to modern medical knowledge which has only understood as recently as 2003 that over 3 million Americans suffer from celiac disease? We are indeed fortunate to live in a time with researchers like Dr. Alessio Fasano at the University of Maryland's Center for Celiac Research, whose studies have put celiac disease on the radar screen of physicians from around the world. We can still do more to educate doctors and others about celiac disease so that no one has to suffer needlessly with incorrect diagnoses. Be sure to read the full text of Dr. Green's article, "Was JFK the Victim of an Undiagnosed Disease Common to the Irish."

Celiac.com 05/01/2015 - In his article titled "Against the Grain," published in the November 3, 2014 issue of The New Yorker, Michael Specter likens the Gluten and Allergen Free Expo to "a travelling medicine show" in the first paragraph (1). Just in case a reader was half asleep and missed the bias embodied in that phrase, Specter ends the same first paragraph with: "There was even gluten-free dog food." It's hard to miss the harsh, cynical tone, and it is a shame that he usurped the name of Melissa Diane Smith's informative book to title his invective. What, we must wonder, is the source of his bias? He does offer some detailed explanations of the bond between glutenin and gliadin, and how carbon dioxide from the fermentation process is trapped as bread and other pastry rises, making light, fluffy bread and pastry. He has done some detailed, even impressive investigation into cooking with gluten. However, he also asserts that wheat-breeding practices haven't induced any changes that might explain the increased incidence of celiac disease since World War II. He then goes on to say: "But something strange is clearly going on. For reasons that remain largely unexplained, the incidence of celiac disease has increased more than fourfold in the past sixty years." Mr. Specter acknowledges that celiac disease is on the rise and, according to Specter, there have not been any major changes to the genetics of wheat that might explain this increase. This perspective appeared in a very prestigious, highly regarded publication—The New Yorker. Many people will believe these claims just because of where they were published. And here is the problem I have with that. Mr. Specter has the genetic information all wrong: Norman Borlaug was awarded a plethora of honors for his work in developing more than 6,000 new wheat hybrids, which included several strains of disease resistant, semi-dwarf wheat that increased per-acre yields by seven to ten fold, thereby leading to wheat independence in a number of third world nations. For these scientific accomplishments he was awarded the Nobel Peace Prize, the Presidential Medal of Freedom, and a Congressional Gold Medal. Several books have been written about Dr. Borlaug and his achievements, and several foreign governments, science academies, and institutions have bestowed him with awards, honorary degrees and memberships. Borlaug has even had streets, university wings, and assorted other places and artifacts named after him and has even been mentioned in popular television shows. He has been called the father of the "green revolution" and has enjoyed very widespread recognition for having been instrumental in saving many millions of lives through increasing the world's food supply in the form of wheat. It is my belief that this venerable and compassionate man of science deserved every honor that was bestowed on him (2). However, I also think that it besmirches Dr. Borlaug's memory when Specter dismisses all those genetic changes to wheat as a possible factor in "the growing number of cases" of celiac disease based on the statement by Dr. Donald Kasarda that he was unable to find "evidence that a change in wheat-breeding practices might have led to an increase in the incidence of celiac disease". One person's failure to find evidence for something does not prove the absence of that phenomenon. Mr. Specter also quotes Dr. Joseph Murray, the very popular and famous (at least in the gluten sensitive community) gastroenterologist at the Mayo Clinic, as an expert in wheat genetics, and quotes Dr. Murray as asserting that wheat genetics haven't changed much over the past fifty years. I'm skeptical that Dr. Murray would profess expertise in the realm of cereal grain genetics. Regardless of whether this is Mr. Specter's construct, or Dr. Murray did actually make this claim to expertise in wheat genetics and the assertion that little has changed in wheat genetics since World War II, the statement is at least incorrect when it comes to wheat genetics. The conundrum Mr. Specter has created by ignoring Dr. Borlaug's work sets up an article in which he attacks what he calls "gluten anxiety". He says that "nearly twenty million people contend that they regularly experience distress after eating products that contain gluten." The implication is clear. Mr. Specter would have us believe that these people are confused about changes to how they feel, and/or whether those changes resulted from switching to a gluten-free diet—apparently all twenty million of them are so confused that they now need Mr. Specter to lead them out of the darkness of their own self-delusion, and begin to appreciate that wheat, in its present genetic form, has been consumed for at least 10,000 years and it's "a staple food that has sustained humanity for thousands of years". I'd like to point out that the Levant, where wheat was first grown, was not host to all of humanity at that, or any other time. Many humans, after leaving Africa about 85,000 years ago, evolved in a variety of environmental niches where gluten grains have not been available until quite recently. And there are many genetic variations of wheat. Which ones, I wonder, is Mr. Specter saying have been with us for so long? Contrary to his assertions, it is this variability that serves as one of the greatest barriers to the development of genetic strains of wheat that are "safe" for consumption by people with celiac disease. Dr. Sachin Rustgi, one of the scientists who is trying to develop such a safe wheat also said that: "Different celiac patients are sensitive to different 'gluten' proteins (prolamins). If one feeds peripheral blood cells sampled from a patient or a small group of patients (from a specific geographical location) with gluten proteins derived from a wheat genotype, it is expected either to see a reaction (monitored by the production of interferon gamma) or no apparent effect. But in the latter case it does not mean that the wheat genotype is non-toxic to all celiac patients" (3). Since different proteins or protein fractions (peptides) are recognized by different celiac patients' immune systems, there is an enormous number of peptides and proteins that are potentially toxic to at least some people with celiac disease. Extrapolating from that point, people with non celiac gluten sensitivity may well be reacting to any of the proteins or derivative peptides from any of the multitudinous variants of wheat. Mr. Specter also makes the claim that: "Humans have been eating wheat, and the gluten in it, for at least ten thousand years." Yet the geneticist, Dr. Martin Richards, and his colleagues report that about three quarters of Europeans are descendants of hunter-gatherers, rather than the early farmers from the Levant (4). So a large majority of people of European descent have not been eating cereal grains for more than 10,000 years. Just how long they have been consuming them depends on where they lived in Europe, which may explain the variability in the frequency of celiac disease across Europe. It is worthy of note that incidence of celiac disease is particularly increased in Scandanavia, Scotland, and Ireland, where climate and topography combined to make cereal grain cultivation more difficult. Thus, one might reasonably interpret this to suggest that these populations experienced limited past exposure to these grains. It is only with modern transportation systems, combined with the abundant excesses of wheat made possible by the work of Dr. Norman Borlaug and many others, in addition to the erroneous belief that wheat is a healthy food, that we now have almost worldwide over-consumption of gluten grains. Increased consumption has led to the increased frequency of celiac disease in these relatively grain-naive populations. Much of the rest of the world's populations have only recently begun to eat these grains. Even in the lowlands of England, where grain cultivation is relatively easy and successful, these grains have only been there for the about the last 5,000 years. Worldwide exposure to these grains varies somewhere between several thousands of years to less than 100 years. And what data supports the notion that even 10,000 years is sufficient time for humans to make the complex adaptation to eating them? Dr. Marlene Zuk has implicitly made such a claim, through reporting on much more rapid adaptations to adult consumption of dairy products (5). However, since we are mammals, and are almost universally able to consume human milk as infants, the adaptation required for the digestion of lactose into adulthood is, comparatively speaking, quite minor. Still, more than two thirds of the world's populations are unable to do so. Mr. Specter's resistance to recognizing gluten as a dietary hazard appears to be rooted in bias, rather than a thoughtful examination of the relevant data. It also appears that Mr. Specter either failed to learn, or failed to mention, that humans do not have the necessary complement of digestive enzymes needed to break some of the bonds between amino acids in the storage proteins of gluten grains, so we can fully digest them (6). Surely, if we were fully adapted to eating them, we should be able to digest these proteins. Nonetheless, Mr. Specter repeatedly disparages and dismisses the disease entity of non-celiac gluten sensitivity, and goes on to say: "The most obvious question is also the most difficult to answer: How could gluten, present in a staple food that has sustained humanity for thousands of years, have suddenly become so threatening?" Of course, this question is only difficult to answer if one ignores the many genetic manipulations of gluten grains and a substantial body of medical research into a variety of human ailments. For instance, Dr. Curtis Dohan and his colleagues were the first to publish a report on the connection between some cases of schizophrenia and gluten grains titled "Relapsed schizophrenics: more rapid improvement on a milk- and cereal-free diet" in 1969 (7). This research was conducted in a locked psychiatric ward. Similarly, seven years later, Singh and Kay followed with publication of an affirming research report that, using a different study design, identified wheat as a pathogenic factor in some cases of schizophrenia (8). This work was also conducted in a locked ward where total control of the patients' food intake could be controlled. Further, neither of these reports asserted a connection between celiac disease and schizophrenia. Over the following two decades, several reports, based on sloppy, poorly designed research, were published in the medical literature, and the notion that gluten grains could be a factor in schizophrenia was quickly forgotten. Mr. Specter would have been pleased with these latter reports. Another critic of Dr. Dohan's work, Dr. Donald Kasarda, a cereal scientist at the USDA, was quite happy to make statements such as: "Dohan wasn't much of a scientist" (9). Yet it was this same individual, Don Kasarda, whose name appeared as one of the authors of a report that asserted that a subset of schizophrenic patients mount a novel immune reaction against gluten (10). Dr. Dohan and his colleagues discovered a disease process, and an effective treatment for it, forty years ahead of the group that Dr. Kasarda worked with. Yet the earlier work was unscientific—until the publication of the work led by Dr. Samaroo, with contributions from Dr. Kasarda. Did Dr. Dohan suddenly become competent? Or is there another, more reasonable explanation? I don't understand the contradictions here. I'm also struggling to understand Mr. Specter's quoting Dr. Kasarda in his attack on non celiac gluten sensitivity. After all, Dr. Kasarda was one of the authors who published the report of non celiac gluten sensitivity in a subset of schizophrenic patients. On another front, Dr. Marios Hadjivassiliou and colleagues have been reporting, over the last twenty years, on celiac disease and non-celiac gluten sensitivity in connection with a variety of neurological diseases. These include depression, cerebral palsy, neurological dysfunction, alcohol induced cerebellar degeneration that results in gluten sensitivity, ataxia, ganglionopathy, a gluten induced condition that mimicks amyotrophic lateral sclerosis, inflammatory myopathy, chorea, headaches, balance disturbances, and neuromuscular disorders. They have also reported that antibodies against one of the protein families in gluten are found in the brain (IgG class anti-gliadin antibodies) and they also attack brain tissues (11). Others have reported connections between gluten and seizure disorders in non-celiac gluten sensitivity (12), and cerebral calcifications with seizures (13). Further, several forms of gluten induced brain damage have been reported in the context of celiac disease, which suggests a similar dynamic for those with non-celiac gluten sensitivity and brain damage. Gluten induced brain disorders include headache/migraine, attention-deficit/hyperactivity disorder, epileptic seizures, mental retardation, cerebellar ataxia and behavior disorders (14) in the context of celiac disease. Any and all of these may also suggest a similar dynamic for those with NCGS. I have worked with learning disabled students who have shown remarkable recoveries on a gluten-free diet, similar to those described by Alexandra Blair, in her 2003 Times article about dyslexic children who improved enormously on a gluten-free diet (15). Unfortunately, these data were not published in the peer reviewed literature, so they are unlikely to persuade researchers to investigate this matter further. Nonetheless, given the data on gluten's impact on neurological and brain tissues, it does seem very possible that many learning disabilities are, at least partly, the result of non-celiac gluten sensitivity, and that they may benefit from gluten avoidance. Time and space limitations prevent me from exploring the research that identifies the psychoactive properties of protein fractions in wheat, first identified by Christine Zioudrou et al, in her 1979 publication (16), or the Hudson and colleagues' report in 1976 showing that a single subgroup of gluten proteins, called gliadins, are toxic to any of a wide variety of human cells (17). Yet Mr. Specter, calling it "gluten anxiety" would have us dismiss all of this and much, much, more peer reviewed research that identifies gluten as toxic to many people who do not have celiac disease. It has never been clear to me why people such as Mr. Specter are quite willing to attack new ideas and discoveries that others have made on their quest for improved health. The attackers seem to want to mock those of us who have found an answer for ourselves. He interviewed several people, whom he quoted in his article, who were just convinced that they felt better when avoiding gluten. Mr. Specter derides those gluten sensitive individuals who were generous enough with their time to allow him to interview them, apparently at the Gluten Free Expo he attended, then compared with "a travelling medicine show". It is difficult to tell whether Mr. Specter was making news or reporting it when he interviewed these people. Please recall the fall issue of the Journal of Gluten Sensitivity, in which I explored the flaws of the research by Dr. Biesiekierski and colleagues in Australia (18). Mr. Specter cites Professor Gibson, one of the authors of the same study, as one of his sources for discrediting the notion of non-celiac gluten sensitivity. Mr. Specter goes on to present himself as having a superior insight into the issue of non-celiac gluten sensitivity, attacking Dr. William Davis, cardiologist and author of the popular book, Wheat Belly (19), and Dr. David Perlmutter, a neurologist and author of the similarly popular book, Grain Brain (20). Are we to ignore the now thousands of researchers whose peer reviewed reports are now characterizing non-celiac gluten sensitivity as a disease entity? And should we ignore the scores of popular books asserting the same thing? Or should we ignore Mr. Specter and the flawed research from Australia? I know what I'm going to do. Sources: Specter M. Against the Grain. The New Yorker. Nov 3, 2014. http://en.wikipedia.org/wiki/Norman_Borlaug Adams S. Discussion with Assistant Research Professor Sachin Rustgi on the genetic modification of wheat to make it safe for celiacs. Journal of Gluten Sensitivity. 2014; 13(2): L11-14. Richards M, Macaulay V, Hickey1 E, Vega1 E, Sykes B, Guida V, Rengo C, Sellitto D, Cruciani F, Kivisild T, Villems R, Thomas M, Rychkov S, Rychkov O, Rychkov Y, Gölge M, Dimitro D, Hill E, Bradley D, Romano V, Calì F, Vona G, Demaine S, Papiha S, Triantaphyllidis C, Stefanescu G, Hatina J, Belledi M, Di Rienzo A, Novelletto A, Oppenheim A. Tracing European Founder Lineages in the Near Eastern mtDNA Pool. American Journal of Human Genetics, 2000; 67; 5: 1251–1276. Zuk M. Paleofantasy. Norton, NY: 2013. Kagnoff M. Diagnosing Celiac Disease. CSA/USA, Seattle, WA., Oct. 3-5, 1997. Dohan F, Grassberger J, Lowell F, Johnson H, Arbegast A. "Relapsed schizophrenics: more rapid improvement on a milk- and cereal-free diet" British Journalof Psychiatry. 1969; 115: 595-596. Singh M & Kay S.: 1976, "Wheat gluten as a Pathogenic factor in Schizophrenia" Science. 1976: 191; 401-402. Kasarda, D. private communication. 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. Hadjivassiliou M1, Mäki M, Sanders DS, Williamson CA, Grünewald RA, Woodroofe NM, Korponay-Szabó IR.Autoantibody targeting of brain and intestinal transglutaminase in gluten ataxia.Neurology. 2006 Feb 14;66(3):373-7. Bruni O, Dosi C, Luchetti A, Della Corte M, Riccioni A, Battaglia D, Ferri R. An unusual case of drug-resistant epilepsy in a child with non-celiac gluten sensitivity.Seizure. 2014 Sep;23(8):674-6. Calvani M Jr1, Parisi P, Guaitolini C, Parisi G, Paolone G.Latent coeliac disease in a child with epilepsy, cerebral calcifications, drug-induced systemic lupus erythematosus and intestinal folic acid malabsorption associated with impairment of folic acid transport across the blood-brain barrier.Eur J Pediatr. 2001 May;160(5):288-92. Diaconu G, Burlea M, Grigore I, Anton DT, Trandafir LM Celiac disease with neurologic manifestations in children. Rev Med Chir Soc Med Nat Iasi. 2013 Jan-Mar;117(1):88-94.) Blair A. Wheat-free diet gives food for thought. The Times. (of London) June 12, 2004. Zioudrou C, Streaty RA, Klee WA. Opioid peptides derived from food proteins. The exorphins. J Biol Chem. 1979 Apr 10;254(7):2446-9. Hudson, D., Purdham, D., Cornell, H., Rolles, C. Non-specific cytotoxicity of wheat gliadin towards cultured human cells. The Lancet February 14, 1976. 339-341. Biesiekierski JR, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology. 2013 Aug;145(2):320-8.e1-3. Davis W. Wheat Belly. Rodale Inc. NY, 2011. Perlmutter D. Grain Brain. Little, Brown & co. NY, 2013.