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    American Celiac Disease Alliance: Unified Voice for Celiac Disease (Formerly Celiac Task Force)


    Scott Adams

    Celiac.com 03/29/2006 - What started as a grassroots campaign urging Congress to require labeling of food allergens has become a broad based advocacy organization, American Celiac Disease Alliance, aimed at providing a uniform voice on behalf of persons with Celiac Disease.


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    More than two years ago, an ad hoc group of 15 leaders in the celiac community, came together to help pass the Food Allergen Labeling and Consumer Protection Act (FALCPA) in Congress. The bill became law on August 3, 2004, easing much of the guesswork in food shopping for some 11 million consumers with food allergies.

    With this achievement, the Task Force realized the need for a permanent, advocacy organization, and elected to become the American Celiac Disease Alliance,Inc. (ACDA). This step formalizes the role of the Alliance as the umbrella organization representing the needs of the celiac community for the advancement of education, research, and advocacy as recommended by the NIH consensus panel on celiac disease in June 2004.

    A not-for-profit organization, the mission of the ACDA is to provide a uniform voice on behalf of persons with Celiac Disease through education and advocacy initiatives.

    Some of the early goals of the organization that are being considered include assisting the FDA in determining a gluten-free standard for foods manufactured or imported into in the United States. The FDA is required to create such a standard by August 2008.

    Disaster preparedness and improving insurance reimbursement for dietitians who provide nutritional counseling to persons diagnosed with Celiac Disease are also on the top of the Alliances project list.

    Dietitians are a critical resource for newly diagnosed celiac patients and consultations with them are currently not reimbursed under many insurance plans. The group will be working with major health insurance providers to have dieticians paid for the services they provide to celiac patients.

    ACDA is contacting key disaster preparedness groups such as the Red Cross and FEMA to help them develop protocol for meeting gluten-free diet needs during natural disasters. The group is also preparing a checklist of items that individuals should stock in case of emergency.

    The ACDA is a volunteer organization headed by Executive Director, Andrea Levario, JD.

    For Further Information Contact: Andrea Levario, Exec. Director
    info@Americanceliac.org


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    Guest Barbara Good

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    Please send information to help my son who was just diagnosed with celiac disease.

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    Guest Dirah

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    T think this article is great since I am just being diagnosed with celiac disease more than likely since I have fibromyalgia very badly. I found this article very informative, not knowing anything about it. I have also pinned it down to the time when I started to get sick, back in 2003, so this article is really helping me to understand my health, body, and a new style of eating.

     

    Thank you

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    Guest Rodney

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    I need an attorney in Texas that understands celiac disease and the harm that can be done when a global chain restaurant that offers a "gluten free" menu serves a celiac sufferer a plate full of gluten.

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    Guest tiajuana

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    I was recently diagnosed with normocystic anemia which is a result of celiac. I was drinking a product Vegan Shakeology. Unbeknownst to me, it contains Kamut, barley and etc which are gluten. The packet states it's produced in a factory that handles wheat. However, it does not state it has 100% wheat products in it. Nor does it state this. I contacted them and they state because the product is high quality they are not required to put it contains gluten on the product. I need some help or answers. My health is now compromised. Please contact me

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    Scott Adams
    The University of Chicago Celiac Disease Center (UCCDC) was established to develop and coordinate patient services, research activities, medical education and public awareness initiatives in order to increase the rate of celiac diagnoses and improve the lives of patients in the Midwest. Our efforts are focused on the Chicago area, but every UCCDC program is created with the intention of making it portable so that other medical centers can implement similar programs with proven results.
    Created by Stefano Guandalini, M.D., an international expert on celiac disease, and Robin Steans, mother of a child with celiac disease, the UCCDC is a unique partnership between a dynamic external advisory board and a premier academic medical center. This endeavor is enhanced through a close working relationship with the Celiac Sprue Association of Greater Chicago and the Friends of Celiac Disease Research in Milwaukee, Wisconsin.
    Since February, 2001, the UCCDC has launched activities in four program areas:
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    Developed a patient care package program that provides concrete tools like a listing of gluten-free foods, a grocery store guide, newsletters, and memberships to local and national celiac organizations, as well as donations of gluten-free foods for children newly diagnosed with celiac disease and their families. Parents who have received the care packages have said that they feel less overwhelmed about learning the gluten-free diet, and less afraid about what to feed their children. Families receive the care package at the time of diagnosis. Designed a clinical protocol to educate primary care physicians about celiac disease through an educational intervention and a year-long study that helps to identify current patients at risk for celiac disease in their practices. The protocol is being finalized and the program will begin to recruit participants shortly. Planned and implemented an educational event for parents, featuring noted author Danna Korn, speaking on celiac disease and the challenges of raising a child with the condition. During the parents presentation, children were kept busy nearby at a gluten-free carnival. Over 175 people were in attendance, and participants expressed great relief in finding other parents to talk with who were experiencing their same anxieties and fears. Featured in a Sunday Chicago Tribune health article on celiac disease, where the UCCDCs telephone number was listed as a resource for readers. Over 125 calls were generated, which led to 6 people getting tested (that we can confirm) and at least one woman, to date, receiving a diagnosis of celiac disease as a result of the article. Created a dedicated celiac disease clinic at the University of Chicago Childrens Hospital, staffed with professionals who are dedicated to the diagnosis and treatment of celiac disease. We are so grateful for the support weve received from organizations, companies and individuals serving the celiac community and look forward to keeping you updated on our progress and upcoming activities.
    The University of Chicago Celiac Disease Center
    at The University of Chicago Childrens Hospital
    5839 S. Maryland Avenue, MC 4065
    Chicago, Illinois 60637
    Tel: (773) 702-7593
    Fax: (773) 702-0666
    Internet: www.cureceliacdisease.org

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    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.
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    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
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    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.
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    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
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    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
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    Source:
    Alimentary Pharmacology & Therapeutics