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    Congress Hears First Ever Testimony on Celiac Disease


    Scott Adams


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    Celiac.com 05/25/2004 - On April 27, 2004, for the first time, individuals with Celiac Disease testified before a Congressional Committee.

    Lisa Murphy, and her son, Colin, represented the ACTF before the House Appropriations Subcommittee on Labor, HHS, and Education. They did an outstanding job outlining what celiac disease is, who it affects, the need for NIDDK to develop a research plan for celiac disease, as well as the need for greater physician and patient education (The Murphy family, of Chappaqua, NY, was featured in a Feb. 2004 Parents magazine article about celiac disease).

    The Labor-HHS Subcommittee determines how much money NIH receives each year. Having individuals with Celiac Disease provide information about the disease is critical to securing funding for research.

    After hearing the testimony, Subcommittee Chairman, Ralph Regula (R-OH), asked if food labels were a problem for celiacs. Not missing a beat, Lisa offered an emphatic, Yes, then highlighted problems she has encountered. Rep. Nita Lowey (D-NY), sponsor of H.R. 3684, the Food Allergen Labeling and Consumer Protection Act, and member of the Subcommittee, explained the bill was drafted to help individuals like Lisa, and Colin.

    The celiac community has waited a very long time for this incredible opportunity.

    The American Celiac Task Force is grateful to the entire Murphy family for graciously agreeing toshare their story, and for helping to make this historic day possible.

    Allison Herwitt
    Co-Chair, Legislative Project
    American Celiac Task Force

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    Guest Karen Winslow

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    Hi Scott...do we have any info on when this bill (Rep. Nita Lowey (D-NY), sponsor of H.R. 3684, the Food Allergen Labeling and Consumer Protection Act) will come up for a vote? We should all become active and contact our Congressional Representatives to vote positively on this bill. Other than your great site, we need to work at getting the word out in the mainstream as well.

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    Scott Adams
    (Celiac.com 03/17/2000) Under the new FDA rules (effective in 2000), consumers will get more information about the sources of protein hydrolysates in their food. Hydrolyzed proteins are added to foods to serve various functions, including thickeners, flavorings and flavor enhancers, and they pose a major problem for people on special diets. From now on food makers will have to declare the source of added hydrolyzed proteins. The new laws state that the source of all protein hydrolysates--regardless of use--will now have to be identified. Further, caseinate will have to be identified as a milk derivative in the ingredient statement when its used in foods that claim to be non-dairy. According to the FDA these new requirements will help people who have special diet restrictions.

    Scott Adams
    Celiac.com 09/01/2005 - The Gluten Intolerance Group® is pleased to announce our gluten-free food certification program, the Gluten Free Certification Organization (GFCO), the first program of its kind in the world! This new independent food processing inspection program will verify that food products meet the highest standards for gluten-free ingredients and a safe processing environment. Food products meeting these high standards will receive our gluten-free certification mark, allowing gluten-free consumers to easily identify foods that are free of gluten and possible cross-contamination from gluten.
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    Products labeled with the gluten-free certification mark allow consumers to easily identify products that have been independently verified to meet the highest standards for gluten-free ingredients and safe processing environment.
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    Scott Adams
    Celiac.com 12/27/2005 - Enjoy Life Natural Foods will begin displaying the GFCO certification mark on all 17 of their products beginning in December 2005. Enjoy Life has a strong commitment to the celiac community. We hear from consumers everyday, expressing how much difficulty they have identifying foods that are safe for their gluten-free diet, said Scott Mandell, President and CEO of Enjoy Life Natural Brands. We are proud to be able to provide them with the extra convenience and safety assurance this new certification provides. Look for more information about Enjoy Life Natural products and recipes using these
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    Jefferson Adams
    Celiac.com 05/12/2015 - The current treatment for celiac disease is the avoidance of gluten-containing foods, beverages, and other products by means of a strict gluten-free diet.
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    Pharmacists play a pivotal role in educating patients about gluten-containing foods, medications, and supplements in order to help them adhere to a GFD and in ensuring that patients receive additional follow-up care, if needed.
    Source:
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    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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    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). 
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    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

    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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    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics