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    NFCA to Suspend Use of Amber Designation After Domino's Controversy


    Gryphon Myers

    Celiac.com 05/23/2012 - In April 2012, the National Foundation for Celiac Awareness debuted its Tiered Credentialing system, whereby restaurants can be awarded varying levels of a gluten-free designation. The system has spawned much controversy, as many sufferers of celiac disease argue that there should be no flexibility with the gluten-free term. Many argue that a food either contains gluten, or it does not: leading people to believe gluten-contaminated products are gluten-free could be harmful to celiacs.


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    Amber DesignationThe issue came to a head when the NFCA awarded Domino's 'gluten-free pizza with an 'amber' gluten-free designation. The controversy is in the preparation: while Domino's may use gluten-free ingredients to make the crust, no extra effort is put forth to avoid contamination (hence, their 'amber' credential rather than 'green', which would be awarded to restaurants who take more care to avoid gluten contamination). Such contamination is almost assured given the volume of gluten flour present in a typical pizza restaurant kitchen, so many have argued that an 'amber' designation is really only useful to people who are gluten-conscious, but do not suffer from any form of gluten sensitivity. 

    A number of celiac disease experts have come forth to denounce Domino's crust and the NFCA's endorsement of it. The NASSCD has even gone so far as to accuse Domino's of “exploitation”, given the gluten-free diet's recent surge in popularity. 

    Domino's or the NFCA might argue that their crust was never intended for those with celiac disease, and that the 'amber' designation indicates that, but as Dr. Steven Guanalini, president of NASSCD argues,“there should be no need for disclaimers. The threshold has to be set at the same level for everybody for the term gluten-free to be meaninful.”

    In what may be viewed as something of a victory for the celiac community, the NFCA announced that in response to overwhelming public pressure, it is suspending use of its “amber” credential. According to their press release, they will "conduct a review to determine the most effective and clearest way to warn the community of the risk of cross-contamination and the use of the phrase 'Gluten Free'". It is still unclear what this means for Domino's.

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    Guest Donnie

    Posted

    Many foods that are labeled gluten-free are not actually free of gluten. I don't trust the labels, because there is no standard for what gluten-free actually means. So it can mean whatever a company wants it to, not what celiacs think it means. The FDA has really dropped the ball on truth in labeling. I have had gluten reactions a few times to products that were labeled as being gluten-free, when they were actually gluten light. Now, I avoid them, because they are not worth the misery and damage they can cause.

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    Guest David Bennett

    Posted

    As a mild coeliac, I think there should be SOME flexibility out there, but it has to be clearly understood and monitored. Here in Britain, gluten-free is now defined as <20ppm. There is also low-gluten, which I can tolerate in moderation, defined as <100ppm. OK, I'm "lucky", but the standards have to cover the whole spectrum.

     

    I have no connection with Domino's - in fact, I don't really like pizza.

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    I think all of us who actually have celiac disease know that "Gluten Free" on the label means absolutely nothing. All you have to do is get deathly ill a few times to learn that lesson. Always, always read labels, and realize that marketing is driven by greed and not altruism. And yeah, I'm a graphic artist and do food labels, I know this game pretty well.

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    Guest Kathleen

    Posted

    Domino's and many other companies that serve and sell food are definitely exploiting the term "gluten-free". I think it must stop. There should be one meaning for the term so that celiac sufferers can be sure of what is safe. The trendy folks who "go gluten free" because it is popular need to understand celiacs are not avoiding gluten to be hip, we need to not eat poison!

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    Guest Susan Swearingen

    Posted

    I am quite pleased to get rid of the amber designation. All I want to know is if I can eat it without compromising my health. If not, it is not gluten-free.

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    Guest watermellon man

    Posted

    I have celiac disease and I can tell you that you better be on your toes when you buy pizzas. Some places that sell "gluten-free" pizzas have flour all over the kitchen and it does get on your order.

    Have you ever looked in a Dominos kitchen? I would not take a 3 item pizza from them even if they paid me. I don't need the misery.

    A standard has to be set and if companies want to "jump on the money bandwagon" then they have to compete fairly and not screw us up.

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    Guest BK Simmons

    Posted

    I have made reading the total list of ingredients on packaging a PREpurchase requirement and especially if the food has toppings, sauces or unique contents. You have to learn what terms are used that may not be the norm. If in doubt, I either do NOT buy it or before I eat it, I call the manufacturer's dietary 800 number on the box and ask specific questions. If I am told that they do not know, I do not eat their product. After all, I am the one who suffers the consequences, not them. Keep a list of safe for you food products/ foods that have caused you to react.

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    Guest Grogan

    Posted

    Very sensible - keep it simple!

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    I eat McDonald's Fries and Kikkoman soy sauce and don't have a problem. Both are "made" with wheat, but at least one of them, the wheat goes through a distillation. Amber on those please.

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    Guest Heidi

    Posted

    What about the pizza toppings? When I ordered a gluten-free crust from Domino's the clerk stated that some of the toppings on the "meat lover's" were not gluten-free, but she could not tell me which ones!

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    Guest Suzanne

    Posted

    I think this is a good thing. I just don't see the point of making a "gluten free" pizza that is not safe to eat because of potential cross contamination. It's a shame that they can't go to the extra effort to create a separate part of the kitchen for the gluten-free pizzas and toppings. It they can't do this, then it is not worth the risk.

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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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    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