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    Expert Opinions Misguided and Misinterpreted


    Dr. Ron Hoggan, Ed.D.
    Image Caption: Photo: CC - opensourceway

    Celiac.com 03/06/2012 - I was disappointed to read the opinion article by   Dr. Di Sabatino and Dr. Corazza  published in February 2012 by Annals of Internal Medicine (1).  The article itself is mostly  reasonable and thoughtful. However,  they implicitly assert gluten to be a healthy food by stating that they wish to prevent "a gluten preoccupation from evolving into the conviction that gluten is toxic for most of the population" (1).  In that single statement they are making dietary recommendations in the absence of evidence; the very situation they claim to want to rectify.


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    Photo: CC - opensourcewayTheir published opinion has spawned a number of articles online and in the popular press which  seem to ignore all of the concessions to non-celiac gluten sensitivity in the source article. Some of these spin-off commentaries even use the original article to support their suggestions that a gluten free diet is inappropriate even for those with symptoms that are relieved by the diet. This definitely contravenes the opinions expressed by Di Sabatino and Corazza.  For instance, one of them states "That hasn’t stopped many people from declaring they are gluten sensitive, even though they may not be." (2)

    Please take a moment to consider this proposition. The gluten free diet is restrictive, inconvenient, and expensive. Why would anyone continue to follow such a diet without being convinced that it was valuable to them?  Di Sabatino and Corazzo freely acknowledge that there is a dearth of diagnostic tests and protocols for non-celiac gluten sensitivity.  

    Doctors  Di Sabatino and Corazza  not only acknowledge non-celiac gluten sensitivity as a cause for symptoms very similar to those of celiac disease, they  call for further research to develop and codify diagnostic protocols that will help clinicians better recognize and treat this newly recognized ailment. They go on to acknowledge that conditions including "headache, lethargy, attention-deficit/hyperactivity disorder, ataxia, or recurrent oral ulceration" in the absence of celiac disease often improve or resolve on a gluten free diet.  Their unfortunate denial of gluten as toxic seems to have invited much of the spin-off conjecture under such titles as "Gluten-free diets not always necessary, study suggests" (3).   Even the characterization of this opinion article as a study is misleading in the extreme.       

    Di Sabatino and Corazza focus mostly on gastrointestinal symptoms when discussing non-celiac gluten sensitivity.  It is clear that their focus does not extend far beyond such symptoms. What is also clear is that many cases of non-celiac gluten sensitivity, just like celiac disease, manifest with a wide range of signs and symptoms including neurological illnesses. Dr. Marios Hadjivassiliou, chief neurologist at the Royal Hallamshire Hospital in Sheffield, U.K. has repeatedly demonstrated that a majority of his patients with neurological disease of unknown origin show evidence of gluten sensitivity, the majority of whom do not have celiac disease (4). 
    My disappointment stems not so much from doctors Di Sabatini and Corazza's article and their assertion that gluten grains are not toxic to the general population, as from the spin-off claims that the gluten free diet is being excessively followed  in the belief that it is more healthful.  A rapidly growing body of evidence is showing  that increasing numbers of ailments among increasing numbers of people are driven by this ubiquitous food.  Gluten may well be toxic for most of the population. We don't know.  We can't know that without more research. 

    The growing numbers of people who are willing to accept the inconvenience and expense of a gluten free diet because of the benefits they experience should be considered.  Gluten may be toxic to many more people than are currently identifiable by available testing. Asserting one side or the other of this argument is at least premature. At most it could prove very harmful to those individuals who listen and obey the voices of experts, even when they err and when relayed inaccurately by the media.  

    For a more detailed account of this controversy please see the spring 2012 issue of the Journal of Gluten Sensitivity.

    Sources:

    1. Di Sabatino A, Corazza G. Nonceliac Gluten Sensitivity: Sense or Sensibility? Ann Intern Med. 2012;156:309-311.
    2. http://www.latimes.com/health/boostershots/la-heb-gluten-sensitivity-20120221,0,4517592.story
    3. http://www.cbsnews.com/8301-504763_162-57381966-10391704/gluten-free-diets-not-always-necessary-study-suggests/
    4. 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.


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    Guest J.C. West

    Posted

    The doctors involved obviously represent "special interests" and would pimp gluten or anything else that would generate "rewards" in some form. Medicine's veracity in egregiously undependable, unreliable and often downright dishonest. In medical school class I was associated with rampant cheating with basic science courses was normative which accounts for vacuous opinions they generate.

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    Scott Adams
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    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