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    Celiac Disease Educational Campaign - New Physician Materials


    Scott Adams

    By Kelly Rohlfs


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    Celiac.com 09/29/2004 - The Childrens Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced the launch of a new educational campaign on Celiac Disease, one of the most common genetic digestive conditions possibly affecting as many as three million Americans (up to 1 percent). Since it has been proven that early detection and intervention can prevent long-term consequences, CDHNF and NASPGHAN are focusing on accurate and timely diagnosis and treatment in children.

    We plan to raise greater awareness about celiac disease and urge physicians to add it to their screening checklist, said Alessio Fasano M.D., chair of the CDHNF Celiac Disease Campaign, NIH Consensus speaker and director of the Mucosal Biology Research Center for the University of Maryland School of Medicine Center for Celiac Research. We now have the information we need on how to diagnose and treat this disease and we need to start applying that knowledge into practice.

    To help spread the word, the campaign will include physician materials such as a celiac disease physician CME slide set, a nationwide Grand Rounds program, and a soon-to-be released NASPGHAN Clinical Practice Guideline on the Evaluation and Management of Celiac Disease in Children, in the fall of 2004. In addition, a new web site http://www.celiachealth.org will provide resources for the medical professional community and the general public.

    They have put together a comprehensive slide set (Acrobat and PowerPoint) available on their website http://www.celiacfacts.org. Although somewhat specific for pediatricians and pediatric gastroenterologists, the material is applicable to all stages and ages of celiac disease. Topics include: Definition, Associated Conditions, Clinical Manifestations and Complications, Diagnosis, Epidemiology, Pathogenesis, Prevention, and Treatment.

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  • Related Articles

    Scott Adams
    The University Of Maryland Center For Celiac Research (CFCR) was established as an impartial, non-profit organization to improve the lifestyle of Celiacs through scientific research. As many of you know, we are presently conducting a nationwide six center serological study to determine the prevalence of Celiac Disease in the United States.
    Scott Adams’ call for "... a conference among the different Celiac organizations to reach an agreement on what is safe and what is not?" sound like a reasonable approach to at least beginning the discussions essential to resolving this very difficult problem. Ann Whelan, in her May-June issue of "Gluten-free Living" enclosed an insert entitled "Time to Act...Unite Now". Maybe this single issue is a good place to start.
    We at the CFCR would like to offer our impartial auspices in putting together such a "Celiac Food Forum". Inviting food scientists, dieticians, nutritionists, support group leaders and interested Celiacs from the United States, Canada and other countries to discuss in open forum these very important issues.
    Please let us know if you think we may be of service by responding to Bob Levy, CFCR Volunteer, via his e-mail address "bobolevy@erols.com" or by calling him at 410-486-0292.
    Dr. Alessio Fasano and Dr. Karoly Horvath, Co-Medical Directors - University Of Maryland Center For Celiac Research.

    Scott Adams
    Celiac.com 07/31/2006 - The National Institutes of Health (NIH) today announced the launch of a campaign to heighten awareness of celiac disease, an autoimmune disorder that interferes with the absorption of nutrients from food. The campaign stems from consensus recommendations of an independent panel of experts convened by the NIH to assess current diagnosis, treatment, and management of the disease.
    “We now know that celiac disease is more prevalent that previously thought — affecting nearly 1 percent of the U.S. population — and remains under-diagnosed,” said Griffin P. Rodgers, M.D., acting director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the NIH institute leading the effort. “Through the campaign, we hope to increase physician awareness of the disease, resulting in earlier diagnosis and better outcomes for celiac patients.”
    Developed by the NIDDK, with coordination among the professional and voluntary organizations working on celiac disease, the campaign offers materials and resources for health professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease. The campaign offers fact sheets, booklets, practice tools for health professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease.
    Celiac disease is an autoimmune response to gluten, a protein found in wheat, rye, and barley. Symptoms of celiac disease range from gas, diarrhea, and abdominal pain, to delayed growth, certain skin rashes, infertility, and osteoporosis. Treatment for celiac disease is adherence to a gluten-free diet.
    “One of the challenges with celiac disease is the vast array of symptoms associated with the disease,” said Stephen P. James, M.D., director of the Division of Digestive Diseases and Nutrition (DDN) at the NIDDK. “We are hoping to educate health professionals and the public that celiac disease is not only a gastrointestinal disease.”
    The NIDDK, part of the National Institutes of Health (NIH), conducts and supports research on diabetes; endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans.
    The National Institutes of Health (NIH) — The Nations Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases.
    CONTACT:
    Melissa McGowan
    301-496-3583

    Jefferson Adams
    Celiac.com 11/23/2012 - In the latest gluten-free celebrity news, none other than Secretary of State Hillary Clinton celebrated her 65th birthday (that's right, she's now officially a senior citizen) with a gluten-free birthday cake.
    Clinton celebrated her birthday last weekend at a fancy inn in rural Connecticut inn with Bill, Chelsea, and Chelsea's husband, Marc before catching a flight to Algeria to address the crisis in neighboring Mali, according to a report in the New York Post. According to the Post's sources, Bill and Hillary stayed up late playing cards in the lobby.
    Clinton's birthday cake was not only gluten-free, but also vegan, as husband Bill has been a vegan for a few years now. Daughter Chelsea's 2010 wedding also featured a gluten-free cake.

    Jefferson Adams
    Celiac.com 11/27/2013 - After dropping 10 pounds over the summer, Miami Heat shooting guard Ray Allen is touting the benefits of his gluten-free, Paleo diet.
    The 6-foot-5 Allen, who enters the 2013-2014 NBA season at his former college weight of 197 pounds, says that weight loss was not his goal when he embarked on the gluten-free diet.
    At 38, Allen stresses the importance quick recovery from rigorous training sessions and NBA games. His gluten-free Paleo eating plan emphasizes high-quality animal protein, fat (including healthy saturated fats), vegetables and fruits, and excludes sugar, gluten, dairy, legumes, starches, alcohol and processed foods.
    Allen told the Miami Herald that "Recovery...is so much more important now that I’ve gotten older. I’ve learned how to manage my body from an eating standpoint. And I’ve always done it, but now I realize there’s another level."
    He adds that he's "always prided myself in coming back in great shape, burning myself out conditioning-wise, running the treadmill, riding my bike, finding different ways to push…never have I added the nutrition part of this."
    Even though he is seems to be benefiting from his diet, Allen clearly still misses some favorite foods. "I haven’t had a pizza at all this year, so I miss it," he said. "This past week, I just added pancakes back into my routine because I can’t go through a season without carbs."
    Hopefully, those are gluten-free pancakes!
    At any rate, it's interesting to see gluten-free diets get such praise from professional athletes. It will be interesting to see what the science has to say about the situation, once we can get some solid data. What do you think? Can avoiding gluten improve athletic performance? Or is there something else going on? Share your commons below.
    Source:
    http://www.examiner.com/article/miami-heat-guard-ray-allen-lost-10-lbs-on-gluten-free-paleo-diet

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023