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My wife was diagnosed a month ago with Celiac Disease and we pretty quickly developed tools and knowledge to eliminate any identifiable gluten from her diet. Her symptoms have rapidly abated but returned today in mild form with no apparent cause. We have carefully reviewed her food diary and decided to toss out some pre-mixed garam masala (spice mix). Do others have strategies for determining the cause of an apparent inadvertent 'glutening'?
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Celiac.com 08/25/2011 - This is a controversial topic. Elizabeth Hasselbeck’s book, The gluten-free Diet (1), has been attacked because it suggests that a gluten free diet can help some people lose weight. One celiac support group has condemned this book as misleading (2). However, I thought it was a pretty good book, and I’m grateful for the public attention that Hasselbeck has drawn to celiac disease and non-celiac gluten sensitivity. There are at least two sides to the question of whether a gluten free diet is useful for weight loss. As with much other dietary advice, each of these conflicting views is sometimes presented in very strident voices. On one side there are numerous websites and newspaper articles, with an array of “experts” weighing in on this issue, decrying the use of a gluten free diet for weight loss. I even saw a segment of a television show called “Dr. Oz” where the gluten free diet was asserted to cause only weight gain. On the same show the diet was referred to as a “fraud” with respect to weight loss. Similarly, one group of researchers claim that an important side effect of the gluten free diet is weight gain. Even some very popular advocates of the gluten free diet insist that it is inappropriate for weight loss. Yet there are some individuals who advocate this diet as an effective weight loss tool and there is some evidence to back them up. There are even a couple of research reports of weight loss on a gluten free diet. In fact there is at least one study that provides some support for each paradigm. So who are we to believe? What information supports each side of the argument? And how can we evaluate that information? Before we get to the evidence, however, I’d like to say that I have listened to Ms. Hasselbeck express some of her political and economic opinions. I am now of the firm belief that she is one of the five people on this continent who may know even less about these issues than I do. So let’s leave out the politics and confine our discussion to the issue of the gluten free diet and whether it is suitable for weight loss. The first and most compelling piece of evidence (for me) is a personal observation. I watched my mom try to lose weight, starting when I was in elementary school. She tried just about every diet out there, from radical fringe to mainstream. She drank protein powders mixed with water instead of eating meals. She tried eating these “rye” crackers that I thought tasted like cardboard.... very crunchy cardboard. She tried a low sodium diet, then a low fat diet, then a sugar free diet, an all fruit diet, a raw food diet, or maybe that was just a single diet of raw fruit. I’m not sure. She probably tried a host of other diets that I don’t remember, but I think you get the idea. She sometimes lost weight only to gain it back as soon as she stopped the diet. More often, she gave up because she got tired of being hungry all the time. She eventually gave up on dieting altogether and accepted being overweight. Then, about fifteen years ago, in her early-mid 70s, she started a gluten free diet. It wasn’t aimed at weight loss. She was trying to reduce the pain caused by her arthritis. In the first year and a half or two years, she lost 66 pounds. From that time onward, her weight continued to gradually diminish to the point where she had lost about 100 pounds over about ten years of eating gluten free. She was not trying to lose weight. She had long since given up on that objective. Yet the excess pounds just melted away. If only because of its weight loss benefits, I suspect that the gluten free diet has extended her life substantially. At about 85 years of age, she started eating gluten occasionally. Part of her gluten consumption is wilful. She sees something that she thinks she might enjoy eating, and she requests a serving. Perhaps because of mom’s lapses into gluten, the staff at the home where she now lives have also become quite cavalier about her gluten free diet. They frequently serve her dishes that contain gluten. Still, her weight has remained fairly stable. My mom is not the only example of weight loss on a gluten free diet. There are other stories on the Internet. Just Google “gluten free weight loss diet” and you will see what I mean. But I can’t vouch for those stories. I didn’t observe their weight loss. All I saw was my mom’s. Currently, there are only a few formal studies that have explored body mass changes on a gluten free diet. One conducted in Ireland reveals that there are eight times as many overweight celiacs as underweight celiacs (Dickey & Kearney). That is quite surprising in light of the common perspective that celiac disease is one of under-nutrition, suggesting that underweight should be a more likely sign of celiac disease. For a long time, that was the dominant belief, but there is clearly a flaw in this paradigm. Suspecting celiac disease only in underweight patients is not the only complication of this issue. Dickey and Kearney also report that after two years of dietary compliance, eighty two percent of their 143 overweight and obese patients with celiac disease had gained yet more weight on a gluten free diet. This would seem to suggest that the gluten free diet is not a good bet as a weight loss tool. However, these results do not seem to have been replicated by other investigators. Another follow-up study, conducted in New Rochelle, NY, reports that ’’ 66% of those who were underweight gained weight, whereas 54% of overweight and 47% of obese patients lost weight’’ on a gluten free diet (Cheng et al ). Thus, on this side of the Atlantic, of the eighty one overweight and obese celiac subjects, about half lost weight following a gluten free diet. That is quite different from the findings in Ireland. Another, much smaller study of childhood celiac disease revealed that about half of the eight overweight children they studied also experienced weight loss (Venkatasubramani et al ). This research was conducted in Milwaukee and is congruent with the findings from New Rochelle. So, on this side of the Atlantic, about half of the overweight celiac patients studied experienced weight loss on a gluten free diet. Perhaps these differences are the result of variations between the versions of the gluten free diet in North America, as compared with the diet in the United Kingdom. The primary difference I am aware of is that gluten free in the UK includes wheat starch whereas most American organizations do not accept wheat starch as gluten free. However, the gluten free diet that includes wheat starch has been shown to reduce cancer risk and many other celiac-associated risk factors, and has therefore been deemed safe. Nonetheless, that same wheat starch may be a factor in the different body mass findings between Ireland and the USA. Or maybe the difference lies in variations in research methods. Without further research, it is difficult to guess.... and that is exactly what we would be doing. Without solid evidence, our beliefs are no more than just guesses. For instance, my mom’s weight loss could have been the result of some factor other than her gluten free diet. Perhaps the beginning of her weight loss just happened to coincide with when she started the gluten-free diet. I’m convinced by my observations of her experience, but that doesn’t mean that you should be. After all, I could be kidding myself. Or her weight loss could have been caused by some other factor that I’m not even aware of or recognizing. That is why many of us contribute our hard-earned dollars to research. We need something more than stories about my mom’s experiences. We need solid, peer reviewed research such as what is found in medical journals. However, even there we need to be cautious about reported findings. One good indicator that researchers are on the right track is when we see a convergence of results from very different studies. When one study produces a given result, and another study produces a similar result despite very different study designs and objectives, the results of the first study are said to have been replicated by the second study. The advantage, in the case of celiac patients experiencing weight loss following institution of a gluten free diet clearly goes to the two studies conducted in the USA. The studies looked at two different sub-populations of celiac patients yet produced approximately the same results. But both studies still have a problem with selection bias. One of the greatest difficulties in assessing research findings is that we are really just assuming that what we see in one or two small groups will be reflected in the general population. This is why, where possible, study subjects are picked randomly from the general population. However, this cannot happen in studies of celiac patients. They are a select group. This is partly because these subjects have celiac disease and partly because they have a diagnosis of celiac disease. I’m really not splitting hairs here. Please bear with me for a moment as I try to explain this important distinction. Unlike more than 95% of Americans with celiac disease, these study subjects have a diagnosis. And don’t be fooled. Clinicians are missing almost as many cases of celiac disease in Europe as they are in the USA. Thus, all three of these studies are looking at a sub-group (diagnosed with celiac disease) of a select group (celiac disease). And the lengthy delays to diagnosis, somewhere between five and eleven years, also occur in Europe and Canada, so the difference is probably not dependent on whether there is a socialist medical system in place, as some have suggested. The select group is formed by people with celiac disease. The sub-group is people drawn from the three to five percent of those who have been diagnosed with celiac disease. We know some of the ways that those with celiac disease differ from the general population. But we don’t know any of the ways, beyond the diagnostic criteria, that people with undiagnosed celiac disease differ from the general population or from the population of people whose celiac disease has been diagnosed. Studying a small sub-group of celiac patients who have a diagnosis, then assuming that the features observed will be present in all those with celiac disease, whether they have a diagnosis or not, is a flawed approach. Statisticians call this mistake ‘selection bias’. It is a well recognized type of statistical error. For instance, if you wanted to predict the buying habits of people living in Pennsylvania, you would not just observe members of the Amish community. Doing so would not only induce a selection bias, it would lead to very misleading information about the general population of Pennsylvania. While many Amish live in Pennsylvania, their buying habits probably do not reflect the buying habits of most people in Pennsylvania. Similarly, the selection bias driven by extrapolating from observations of sub-groups of people with diagnosed celiac disease and applying those principles to undiagnosed celiacs, leading us to either assume that weight loss will or will not occur on a gluten free diet is mistaken and likely to produce misleading information. In addition to selection bias, sample size is another important factor in predicting features of a larger population based on observations of a sub-population. The smaller the group, the less likely it is to reflect the variations present in the larger population of those with celiac disease. For instance, if the US population is currently about 311 million, and the rate of celiac disease is about one in every 133 people, then there should be about 2.3 million Americans with celiac disease. Only three to five percent of Americans with celiac disease are thought to be diagnosed with celiac disease. And the studies of overweight celiacs who gained or lost weight on a gluten free diet include about 89 Americans and 143 Irish people. Is it credible to imagine that we can predict the responses of 2.3 million Americans based on observations of a sub-group of 89 of their compatriots and 143 Europeans? I think that most readers will agree that leaping to such conclusions is unreasonable. Yet that is what we do if we insist on the exclusive correctness of either side of the question of whether the gluten free diet is an effective weight loss tool. I am convinced, both by my observations of my mom, and by the results of these two small studies, that some celiacs will lose weight on a gluten free diet. However, I would not presume to insist that it is the best, or even a good tool for all overweight celiacs. Neither would I insist it was a good weight loss tool for all diagnosed overweight celiacs. Given the US studies, that is clearly not the case. Equally, denial of anecdotal reports or the two US studies claiming that the gluten free diet is not an effective weight loss tool for anyone is also unreasonable. We can only say, with confidence, that these study results may apply to those who are diagnosed with celiac disease. Yet we have a fairly even split, with American researchers showing that about half of overweight celiacs lose weight on a gluten free diet, and Irish researchers asserting that eighty two diagnosed overweight celiacs gained even more weight on a gluten free diet. Yet these statistical problems are not insurmountable. If a group of researchers conducted random screening blood tests for celiac disease in a variety of settings and circumstances, confirmed the celiac diagnosis in a large group of these individuals, and followed up with those who were overweight and undertook the gluten free diet, then their observations might reasonably be applied to the celiac population in general, whether diagnosed or undiagnosed. There would still be a relatively minor statistical error induced by cases of sero-negative celiac disease, but the statistical problems would not be anywhere near as problematic as asserting that any or all of these three studies tell us much about weight loss on a gluten free diet, except that it sometimes happens in small sub-groups of diagnosed celiac patients. Since such research has not been conducted, it behooves all of us to take a moderate stance on either side of this debate. That does not mean that we can’t or shouldn’t make use of the available information. Each of us can draw our own conclusions based on our interpretations of the available data. If you believe that, in North America, a gluten free diet can induce weight loss in about half of overweight, newly diagnosed celiac patients, it does seem reasonable to suggest that the gluten free diet may be all that is needed for some diagnosed celiacs to lose weight. However, since we are missing more than 95% of cases of celiac disease, it is difficult to say whether it will help those undiagnosed, overweight celiacs to lose weight. Nonetheless, it is possible. Thus, if it will help some, perhaps about half of them to lose weight, those individuals might well consider this information, limited though it may be, very valuable. Anecdotal reports, such as my mother’s story, might also be considered very valuable by those who can lose weight on a gluten free diet. For those who do not lose weight on this diet, I suspect that many of them have walked the path my mother did, and it won’t be the first time that a diet failed to work for them. This, of course, raises the question of why some individuals and organizations have vigorously opposed and decried anecdotal claims that a gluten free diet may help some people lose weight. Clearly, there is hard scientific evidence to support this claim. The reverse is not the case. Nobody has, or can, prove that the gluten free diet is always ineffective at helping people lose weight. Meanwhile, we can hope for more research that will answer some of the many questions that arise from this relatively new information that there may be many more overweight people with celiac disease than there are underweight people with celiac disease. Several of the questions that remain include: What causes overweight and obesity in patients with celiac disease? It is, after all, a disease that is characterized by inadequate absorption of nutrients from the food that passes through the gastrointestinal tract. I have previously suggested that specific nutrient deficiencies may induce food cravings that cause some to continue to eat despite feeling ’’full’’ because their bodies continue to demand these missing nutrients. The new field of metabonomic research may soon shed more light on this area. It has already demonstrated that subjects diagnosed with celiac disease are not as efficient at metabolizing glucose (usually derived from carbohydrates) as those without celiac disease. Does wheat starch have any impact on nutrient absorption or appetite? If even small amounts of opioid peptides survive in wheat starch and are allowed access to the bloodstream and brain, they may well have an impact on appetite. Opioids or some other component of wheat starch might also alter ghrelin (a hormone that incites appetite) and/or leptin (a hormone that suppresses appetite). We just don’t know. Are there other dietary differences between Ireland and the USA? We are aware of the difference in wheat starch, but what other factors might contribute to these divergent research results? How does wheat starch compare with the 20 parts per million currently being put forward as the labelling standard for American legislation in the offing? Does wheat starch contain 20 ppm? Will the legislation in question change conditions for celiac patients? Just how much contamination from gluten grains is present in commercial oats? Even in the absence of contamination, how many people with diagnosed celiac disease experience cross-reactions with oats? This is where the selective antibodies are sensitized to protein segments found in oats as well as in gluten grains. What other differences between Ireland and the USA might explain these variations in research findings? Could variations in sunlight, or water-borne minerals, or even genetics contribute to the difference in findings? How representative are these groups of other groups of celiac patients? Do they reflect what is going on among all the other diagnosed celiacs in their region? And how do these findings apply to the undiagnosed celiacs? Is region a genuine factor in all of this? I remember when many researchers were quite willing to believe that there was some difference that had Italy showing a rate of celiac disease of one in 250 while in the USA and Canada it was thought to afflict about one in twelve thousand. We now know that was silly, but at the time, there were a lot of apparently intelligent people who were vigorously asserting the accuracy of those variations and postulating many creative explanations for them. I remember one, now prominent celiac researcher, admonishing me not to take the Italian findings too seriously. He was very confident that they represented a large overestimation of the true incidence of celiac disease in Italy and could not reasonably be suggested as reflecting anything about Canada or the USA. Now here is a really startling thought. Some of the overweight people with non-celiac gluten sensitivity might also be able to lose weight on a gluten free diet. If so, this could produce as much as a ten-fold increase in the number of people who might lose weight on our diet. Has anyone tested obese and overweight people for anti-gliadin antibodies? Could gliadin be a factor in some peoples’ weight problems? I wonder how many people might be helped to lose weight if pre-conceived notions about the gluten free diet could be relinquished in favour of a more open minded view.... one that recognizes that there is some evidence that some people can and do lose weight on a gluten free diet? The dogmatic certitude that abounds on the question of weight loss through the gluten free diet is profound and disturbing. As is pointed out by nutritionist, Brian Dean, in his article on gluten and heart disease in this issue of The Journal of Gluten Sensitivity, one long-standing dietary sacred cow has been killed. We now know that eating saturated fats is not a causal factor in heart disease. Equally, the emerging sacred cow that a gluten-free diet is not appropriate for weight loss is, as yet, supported only by flimsy evidence, all of which is contradicted by other research. So let’s avoid making rigid pronouncements about the gluten free diet until we have a better understanding of the complex and perplexing causes of obesity and overweight in the context of untreated celiac disease. And please, let’s remember that some people can and do lose weight on a gluten-free diet alone. My mother is an excellent but by no means unique example. Others have similar stories. My own experience on the diet was weight gain, and now I have to work at keeping from gaining any more. Only those who know all there is to know should speak in absolutes. The rest of us should constrain ourselves to offering opinions and perspectives. Sources: Hasselbeck E, The Gluten-Free Diet: A Gluten-Free Survival Guide. Center Street- Hatchette Book Group, NY, 2009. http://glutenfreegoddess.blogspot.com/2009/05/gluten-free-diet-opinion-from-elaine-monarch.html Dickey W, Kearney N. Overweight in celiac disease: prevalence, clinical characteristics, and effect of a gluten-free diet. Am J Gastroenterol. 2006 Oct;101(10):2356-9. Cheng J, Brar PS, Lee AR, Green PH. Body mass index in celiac disease: beneficial effect of a gluten-free diet. J Clin Gastroenterol. 2010 Apr;44(4):267-71. Venkatasubramani N, Telega G, Werlin SL. Obesity in pediatric celiac disease. J Pediatr Gastroenterol Nutr. 2010 Sep;51(3):295-7.
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Celiac.com 11/07/2012 - When it comes to whether or not mothers with celiac disease should breastfeed their children, there has been a fair amount of conflicting information in circulation. Some studies have found that breastfeeding renders a protective role when combined with a 'windowed' introduction of gluten, but others have shown no such protective effect. Furthermore, some researchers question the longevity of the protection offered. An international project called PREVENTCD seeks to boil down current information from a number of studies, in order to produce a primary prevention strategy for infants at risk of developing celiac disease. The PREVENTCD project aims to answer the following questions: Breastfeeding (BF) and celiac disease (Does any BF reduce the risk of developing celiac disease in early childhood? Is there a difference between any or exclusive BF in regard to risk reduction? Is the duration of BF related to the risk of developing celiac disease?). BF at the time of gluten introduction and celiac disease (Is gluten consumption while being breastfed important for risk reduction?). Timing of gluten introduction (Is age of gluten introduction important to the risk of developing celiac disease?). Amount of gluten at weaning (and later) and celiac disease (Is the amount of gluten ingested an independent risk factor for the development of celiac disease in early childhood? Is there a threshold level of gluten consumption for developing celiac disease in early childhood?). Does the administration of microbial supplements (probiotics) and/or substrates (prebiotics) has an effect on the risk of celiac disease? For this report, a collection of studies (preference given to randomized controlled trials) involving infants at risk of developing celiac disease and breastfeeding practices were examined independently by a number of researchers. Inclusion criteria were applied independently and quality of each study's data was examined using the Cochrane Collaboration's tool for assessing bias risk. Meta-analysis was planned, but outcomes and definitions were inconsistent. 29 studies were initially identified. Of those, 12 studies were included in the analysis. Collating the data from each, the questions were answered as follows: Effect of Breastfeeding on Celiac Disease: Some studies show a protective effect of breastfeeding children at risk of developing celiac disease, but some show no effect and no studies show a long-term preventative effect. Thus, the main controversy surrounding breastfeeding celiac children is whether it has a significant long-term effect. This should not be interpreted as evidence that suggests breastfeeding does not render long-term protection, but rather that no studies have adequately addressed the question yet (partially due to methodological challenges). Studies showing protective effect have postulated that the protection offered by breastfeeding is the result of introducing cytokines, as well as IgA antibodies, lactoferrin and other enzymes (as well as small amounts of gluten) that contribute to passive immunity by reducing the number of infections in the gut. Data from the studies also suggests that longer breastfeeding periods have a more pronounced effect on celiac disease risk. However, there was no evidence to suggest that 'pure' breastfed children were at any less risk than those both breastfed and formula fed. Effect of Breastfeeding at Time of Gluten Introduction on Celiac Disease: Data from five case-control studies suggests that breastfeeding at the time of gluten introduction is associated with lower risk of celiac disease compared to formula feeding. The quality of the data is questionable, as most feeding patterns were gathered retrospectively. Again, it is also unclear whether the protective effect merely 'postpones' celiac disease. One study also showed no effect of breastfeeding at the time of gluten introduction on celiac disease autoimmunity (effect on biopsy-proven celiac disease is unknown). Timing of Gluten Introduction: While the role of age at time of gluten introduction in determining celiac disease risk is unclear, data from observational studies suggests that early and late introduction of celiac disease may increase risk of celiac disease. Early is defined as before 3 months, while late is defined as later than 7 months. One randomized controlled trial showed that gluten introduction after 12 months might be beneficial, but sample size and unclear risk of bias make this finding inconclusive. Effect of Amount of Gluten at Weaning (and Later) on Celiac Disease: One study documented that introducing gluten in large amounts versus small or medium amounts increased celiac disease risk. This echoes old data collected during Sweden's 1980s celiac disease epidemic, but it is unclear whether this is a dose-response effect or a threshold effect. However, a recent study proposes a quantitative model for a HLA-DQ2 gene dose effect in the development of celiac disease. Administratioin of Probiotics and/or Prebiotics: There have been no studies examining the effect of probiotics and prebiotics on celiac disease risk in infants, but it is reasonable to assume that manipulating gut microbiotia in early stages of life could affect celiac disease risk. Future studies should investigate this possibility. In conclusion, there are still a lot of holes in the data, but what we know thus far tells us that: Breastfeeding seems to offer some form of protective effect (whether long or short term) on celiac disease risk in infants. Longer breastfeeding periods seem to offer more protection, but some formula feeding doesn't appear to affect celiac disease risk. Gluten should be introduced in small quantities between 4 and 7 months. Gluten should only be introduced while/if the infant is breastfeeding. The committee on Nutrition of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) believes that this strategy map will not only decrease rates of celiac disease, but type 1 diabetes, mellitus and wheat allergy as well. Most of these recommendations have been in place for a while and there is a lot of room for more data, but in the meantime, this is probably the safest strategy for feeding infants who are at risk of developing celiac disease. Source: http://www.medscape.com/viewarticle/771287?src=mp
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Celiac.com 09/28/2007 - Celiac disease is one of the most common lifelong disorders in western countries. However, most cases in North America remain currently undiagnosed, mostly because they present unusual symptoms and because of the low number of doctors who have a sound awareness of celiac disease. In a large European survey, the ratio between diagnosed and undiagnosed cases, found by mass serological screening, was as high as 1 to 7 , an effect termed the ‘celiac iceberg’. In addition to having chronic symptoms that might otherwise respond to a gluten-free diet, undiagnosed patients are exposed to the risk of long-term complications of celiac disease, such as anemia, infertility, osteoporosis, or cancer, particularly an intestinal lymphoma. Celiac Disease is diagnosed by confirming the presence of intestinal damage to the small intestine through a biopsy, along with a clinical response to the gluten-free diet. However, serological markers, e.g., the IgA class anti-tissue transglutaminase (tTG) antibodies, are useful screening tests. The sensitivity and the specificity of the IgA anti-tTG test are 94% and 97%, respectively. To address the large number of undiagnosed cases, a team of researchers recently set out to assess whether an active case-finding strategy in primary care could lead to increased frequency of celiac disease diagnosis, and to assess the most common clinical manifestations of the condition. The team was made up of Carlo Catassi, M.D., M.P.H.; Deborah Kryszak, B.S.; Otto Louis-Jacques, M.D.; Donald R. Duerksen, M.D.; Ivor Hill, M.D.; Sheila E. Crowe, M.D.; Andrew R. Brown, M.D.; Nicholas J. Procaccini, M.D.; Brigid A Wonderly, R.N.; Paul Hartley, M.D.; James Moreci, M.D.; Nathan Bennett, M.D.; Karoly Horvath, M.D., Ph.D.; Margaret Burk, R.N.; Alessio Fasano, M.D. 737 women and 239 men, with a median age of 54.3 years, who attended one of the practices participated in a multi-center, prospective study involving adult subjects during the years 2002-2004. All individuals with celiac-associated symptoms or conditions were tested for immunoglobulin A anti-transglutaminase (tTG) antibodies. Those with elevated anti-tTG were then tested for IgA antiendomysial antibodies (EMA). All who were positive for EMA were advised to undergo an intestinal biopsy and HLA typing. 30 out of 976 study subjects showed a positive anti-tTG test (3.07%, 95% CI 1.98-4.16). 22 patients,18 women, 4 men, were diagnosed with celiac disease. In these 22 cases the most common reasons for screening for celiac disease was: bloating (12/22), thyroid disease (11/22), irritable bowel syndrome (7/22), unexplained chronic diarrhea (6/22), chronic fatigue (5/22), and constipation (4/22). The prevalence of celiac disease in the serologically screened sample was 2.25% (95% CI 1.32-3.18). The diagnostic rate was low at baseline (0.27 cases per thousand visits, 95% CI 0.13-0.41) and rose sharply to 11.6 per thousand visits (95% CI 6.8-16.4, P This study shows that the diagnosis rate for celiac disease can be significantly increased through the implementation of a strategy of active case-finding. Am J Gastroenterol. 2007;102(7):1454-1460.
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