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    Are Gluten-Free Cheerios Really Unsafe for Celiacs?


    Jefferson Adams


    • Canadian Celiac Association warns against Gluten-Free Cheerios, but is there good evidence?


    Image Caption: Should celiacs worry about gluten in Gluten-free Cheerios? Photo: CC--Mike Mozart

    Celiac.com 10/26/2016 - There's been a bit of confusion lately over claims by the Canadian Celiac Association (CCA) that the optical sorting system used by General Mills to produce gluten-free Cheerios and other cereals is somehow flawed, and their products not safe for people with celiac disease. The CCA has issued a warning to Canadian consumers with celiac disease against eating gluten-free Cheerios products, based on concerns of possible contamination due to a what they say is a faulty sorting process.


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    General Mills debuted their patented optical sorting process and launched gluten-free Cheerios in the U.S. last summer, and they spent millions of dollars developing the new technology. Later, the company voluntarily recalled nearly 2 million boxes, when a plant mixing error caused wheat flour to mixed with oat flour. However, since that time there have been no known reports of systemic contamination, which is what the CCA is alleging.

    General Mills launched five flavors of gluten-free Cheerios in Canada this summer: Original, Honey Nut, Multi-Grain, Apple Cinnamon and Chocolate. Clearly, the CCA is looking to protect people with celiac disease from the perceived possibility of gluten contamination, but the CCA's statement goes beyond urging simple caution, and urging celiacs to report any cases of gluten contamination and to save boxes for lab testing.

    "Hearing stories…"

    Samantha Maloney, former president of the Ottawa chapter of the Canadian Celiac Association, told CBC Radio's All In A Day that the General Mills process of sorting grains to produce gluten-free cereal is "flawed."
    She and her group claim that they have made the claim because they have "heard stories." Has Maloney or anyone in her group actually followed up on these claims, these "stories" she's "hearing?" Without offering any proof or names, or scientific data for making her claim, Maloney went on to say that General Mills is having "a bit of a problem" with the way they are cleaning their oats. Is she saying that the product is being contaminated by gluten? It seems so.

    Well, if that's true, then surely some celiac suffer who ate Cheerios and had a bad reaction must have a box of cereal that can be tested. If General Mills is churning out box after box of gluten-tainted cereal and labeling it "gluten-free," then it seems like a massive scandal and lawsuit waiting to happen. Maybe some enterprising person, or even a law firm, can go grab some boxes and get them tested, and add some actual evidence to these claims.

    One would think Maloney and the CCA would confirm such information beforehand, rather than first making the claim, and then asking people to provide confirmation after the fact. If Maloney's claims are proven true, then General Mills deserves to be called out, and Celiac.com will certainly be among the first to report it.

    Until then, saying that General Mills is knowingly using a faulty system to sort their gluten-free oats is simply irresponsible hearsay, and doesn't really help provide accurate information for consumers with celiac disease, something the Canadian Celiac Association claims is part of its mission. It's one thing to urge caution, and to call for testing and evidence gathering that supports any claims of gluten-contamination, but it's entirely another to claim without any evidence a product and process are flawed and likely to harm people with celiac disease.

    What happens if the General Mills process turns out to be okay? What happens if Gluten-Free Cheerios and other products are perfectly safe? That means the CCA was not only wrong, they were wrong without even having any facts to support their original claim. How does that help people with celiac disease or the CCA?

    Celiac.com continues to support efforts by the CCA and other groups to inform and protect people with celiac disease, but we also urge proper facts, data, context and evidence to support any hard claims about products, gluten-free or otherwise.

    Regarding the status of General Mills' patented optical sorting process for producing gluten-free grains for their Cheerios and other gluten-free products, Celiac.com urges caution on the part of individual consumers. Currently there is no evidence to suggest that any of these products not gluten-free, but, there is also no evidence that similar gluten-free oat cereals made by smaller companies do a better job to ensure that their products are safe, yet there is no controversy about them.

    Ultimately people with celiac disease should use caution, and, in the event they experience gluten contamination, they should save the box and report it to the Canadian Celiac Association, and/ or any of the other official resources listed on the CCA website:

    Stay tuned to celiac.com for information on this and related stories.

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    I stay away from wheat and gluten because it gives me diarrhea, joint aches, weight and energy loss. After a couple of weeks of eating "gluten free" cheerios (2-3 bowls per day), I developed diarrhea, joint aches, cramps and energy loss. My cereal was from several different boxes and different stores. I got off the Cheerios and those symptoms are gone.

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    Wow, I am just wondering if you managed to talk with Samantha Maloney to verify your own accusations against her. You seem to be accusing her of the same thing that you're doing. And if she is wrong then I would think General Mills are the people who should be coming out with a statement such as this, if in fact she's totally wrong. Knowing that they recalled so much of their own product leads anyone to think that they must take extra precaution if you want to eat their cereal. As we all know, nothing is infallible. Being an extremely sensitive celiac there is no way I'd eat anything from a company that also has wheat in their manufacturing facilities. I've been the recipient of cross-contamination far too often. I say good on Samantha Maloney for warning people of the possibilities. You have to remember, many people are new to this diagnosis and have no idea what is good for them and what isn't.

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    I eat them almost every day and so does my celiac daughter. YES, I actually got sick on the recalled ones. I actually looked up the box number online and was shocked because I couldn't figure out what glutened me and was thrilled with their corporate responsibility for the error. NO we haven't gotten sick since. I firmly applaud General Mills for the advances they have made and will continue to enthusiastically endorse their products.

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    Wow, I am just wondering if you managed to talk with Samantha Maloney to verify your own accusations against her. You seem to be accusing her of the same thing that you're doing. And if she is wrong then I would think General Mills are the people who should be coming out with a statement such as this, if in fact she's totally wrong. Knowing that they recalled so much of their own product leads anyone to think that they must take extra precaution if you want to eat their cereal. As we all know, nothing is infallible. Being an extremely sensitive celiac there is no way I'd eat anything from a company that also has wheat in their manufacturing facilities. I've been the recipient of cross-contamination far too often. I say good on Samantha Maloney for warning people of the possibilities. You have to remember, many people are new to this diagnosis and have no idea what is good for them and what isn't.

    We are reporting on what Samantha told a major news outlet--CBS. If you were to just go by people's stories about what is safe and what isn't for a celiac diet, your diet would be severely limited. That is though, your choice to make. A major celiac support organization, however, has a higher responsibility to its members, and should require much more evidence to make such claims.

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    gluten-free Cheerios are FANTASTIC - and they have never made me sick. I was diagnosed in 2007 and have been gluten free ever since. I have been cross contaminated so I would readily recognize it if it occurred after eating Cheerios.

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    Less than 20 ppm is NOT gluten-free. I affirmed this years ago, by binging on allegedly "gluten-free" [not!] Chex when they first came out a few years ago, which incited a severe skin reaction. [i have DH, and consider myself a canary in the coal mine of gluten contamination.] I called in the FDA to test , but with their limited resources they were unfortunately unable to detect traces of gluten below 20 ppm. But, the evidence was clear: empirically, Chex was not "safe" for me. The symptoms were unmistakable, and directly related to the ingestion of Chex. I have never purchased another box, and refuse to trust General Mills "gluten-free" product line. Once bitten, twice shy. Caveat Emptor!

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    The issue with Cheerios is the mechanical sorting of the oats. That process still has some gluten remaining... it's not a uniform process so some boxes could have more gluten than other boxes. It's not just General Mills using mechanical sorting of oats... many companies use mechanical sorting- that is what should concern people with celiac. No one has to label if their oats were mechanically sorted either. It's important for people with celiac to consume oats from a dedicated oat field.

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    Guest Cynthia C Kelley

    Posted

    I did get really sick when I first ate Cheerios.The company admitted to a problem. I contacted the company and they gave me coupons for more boxes, which I used for the Food Shelf as I didn't trust them. I was apprehensive, but finally ate Cheerios again. Since then, I have eaten Cheerios (without milk as I'm dairy free) many times and I've been fine. I'm celiac and very sensitive to gluten and I share Honey Nut Cheerios with my husband and I am fine.

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    If one credible highly gluten sensitive person gets sick in a way that they only get sick from gluten, and then they stop eating the product and they get better, that proves that the product is not really gluten free, and it should not be consumed by highly gluten sensitive people. It is not enough proof to make an accusation against the company. So, warning people is good. Believing that there is no doubt that the product is not gluten free is also good. But, accusing the company is premature. Not because there is not enough proof, but because the proof is not the type that the public will accept as proof. Eating the product and keeping the box for testing is not being cautious, because keeping the box does not stop you from getting sick.

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    Guest kwixote

    Posted

    You make some very good points. As a person with celiac, it is easy to feel the world is always against you, and to stay in a permanent defensive crouch. But when corporate America finds it in their interests to produce gluten-free food, then we really must honor that. I would assume they are as safe as they say they are -- until there is evidence to prove otherwise.

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    Guest LeeAnne

    Posted

    I eat them almost every day and so does my celiac daughter. YES, I actually got sick on the recalled ones. I actually looked up the box number online and was shocked because I couldn't figure out what glutened me and was thrilled with their corporate responsibility for the error. NO we haven't gotten sick since. I firmly applaud General Mills for the advances they have made and will continue to enthusiastically endorse their products.

    I can finally eat Lucky Charms again! My once favorite cereal and now my new favorite cereal. I agree with Meg, General Mills is doing their best to get a product to market that we most of us can eat in a responsible way. There must be a difference for some people when a food is certified gluten free verses just labeled as such.

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    Guest Linda Ostrow

    Posted

    I LOVE the new Cheerios. THANK YOU General Mills. I missed Cheerios so much. I am EXTREMELY sensitive to gluten....EXTREMELY and Cheerios doesn't bother me at all. I am so VERY grateful.

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    I was beyond excited to try Cheerios again after years of going without, but unfortunately I got pretty sick off the non-contaminated Cheerios.

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    I used get sick regularly from Cheerios. I have not become sick from them since they claimed they are gluten free. As a matter of fact, it is the only dry cereal I eat. Thank you General Mills.

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    I was thrilled when Cheerios came out gluten-free and I could eat my favorite cereal again. I have had no problems with the gluten-free Cheerios. As a matter of fact, this morning I had the Pumpkin Spice Cheerios.

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    Guest Kristen

    Posted

    Your article is flawed. After the recall of the contaminated boxes ~ the FDA did indeed test 30 some odd boxes of the gluten-free Cheerios and found that the levels of gluten was different in every box, including over the 20ppm limit. These were NOT part of the recall from the other incident, this is actually a second recall. There has been no report of why these are contaminated and what they are doing to fix it: http://www.fda.gov/Food/RecallsOutbreaksEmergencies/SafetyAlertsAdvisories/ucm465984.htm As well, Gluten Free Watch Dog has also had much correspondence with General Mills, done testing and reported that they are not safe: https://www.glutenfreewatchdog.org/product/gluten-free-cheerios-combined-datasummary-statement/419 So ~ in saying that this is because the CCA 'heard stories' is not remotely accurate. There is evidence that these products are not gluten free, there are many reports of people being sick. Your article is 100% inaccurate. Sensationalism ~ sad.

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    Guest Valerie

    Posted

    To solve this problem dealing with General Mills and their tainted catastrophic ordeal with "Simply 'Gluten-free' Cheerios", I would highly recommend GM to remove all Gluten-free Cheerios off the shelf, and furthermore, take them off the market! GM is committing a dis-service to a large segment of the population that is "gluten free" . I will never touch or eat another box of GM gluten free products ,ever again! This is unheard of and disgusting as if you are promoting health and safety of our country's citizens! YOU SHOULD BE ASHAMED OF YOURSELF!!!!!!

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    The problem with all gluten free food is that it's OK until it's not. I've been sick occasionally on sorted oats (Bob's Red Mill, Pamela´s oat bars), but never on purity protocol oats. I feel the risk of a sorting error is greater than that of oats grown with strict controls. Purity protocol oats also adhere to a lower ppm standard. I guess "safe" depends on if the ppm and sorting error risk are within one's comfort zone.

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    I have tried eating the "Gluten Free" Cheerios a few times from different boxes and every time I reacted. I only tried a few times because I wasn't sure what made me sick. Now I know with absolute certainty. I do not at all believe in the process they use and will never again eat Cheerios after getting sick every time I tried them. Not all celiac are created equal some are more sensitive than others so they might not be bad enough for all celiacs to react to them. I am highly sensitive and react to the slightest cross contamination. So Thanks, but no Thanks General Mills!! You can keep your Cheerios!!!!

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    I agree that claims need to be backed up with solid evidence. I appreciate the efforts various companies are making to provide the celiac and gluten intolerant community with food options and think that unless we are very careful when we call them out for errors, we are going to scare away other manufacturers and restaurants who are genuinely trying to accommodate us.

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    Where was the recall? I don't generally respond to blogs but if you are new to this gluten-free stuff do to an allergy, please beware. I did get sick after eating a gluten-free honey nut cheerios and more than once as after I while I heard others say they were OK and I got sick again so it was definitely the Cheerios. I don't know how sensitive I am but I can eat candy bars that say may contain wheat (processed in plant with other wheat products) and I am generally OK; that is not the case with Cheerios.

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    I, like many other celiacs, am also allergic to "pure" oats (those that are completely uncontaminated by wheat or other gluten sources). I have similar symptoms to having been glutened (diarrhea, stomach cramps, etc.) after eating oats, though the symptoms last a shorter length of time. I warn other celiacs to be cautious of ingesting even gluten-free oats, until you can confirm that you aren't in the 25-30% who have this extra allergy. It may be that a faulty vsystem of vetting the oats is not the only cause of potential problems for celiacs.

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    WOW, is someone in bed with General Mills? Did someone become the official spokesman for General Mills? If they get an independent third party to make their product "Certified Gluten Free" and I'd eat it, until then I am staying away. Maybe you can pass this along to them, since it appears you have a close relationship with General Mills.

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    Not all with celiac are the same, that's why diagnosing it is so difficult. You can have 10 people with celiac eat the exact same meal and all ten have may have different reactions. But we do know is this, NO AMOUNT of gluten is safe for someone with celiac and damage can actually be occurring without you or I even knowing it. Everyone with celiac should be supportive of each other, that's what will make a successful support group and make for strong public advocacy.

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    My 12-year-old daughter was diagnosed with celiac via blood work, endoscopy and biopsy nearly three years ago. At the time, her tTG was over 100 and the damage to her intestines was visible to the naked eye. She is well-recovered now, though susceptible to the occasional small cross-contamination. She also eats gluten-free Cheerios daily and her latest tTG numbers were perfect. Kudos to General Mills for their efforts in bringing gluten-free foods mainstream.

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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.
    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