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  1. Celiac.com 12/19/2017 - The Canadian Celiac Association (CCA) finds itself facing questions of rumor-mongering and inaccuracy in the face of its ongoing comments about General Mills and Gluten Free Cheerios. The CCA recently retracted a controversial October 20 press release in the face of questions about the accuracy and validity of its statements. The retraction reads as follows: "The CCA retracts its statement of October 20, 2017 and replaces it with this statement due to errors in the original statement." They retracted every claim made in the first press release. In addition to its erroneous, and now retracted press release, the CCA has made numerous public statements casting doubt on the process General Mills uses to create their Gluten-Free Cheerios, and other oat-based cereal products. The CCA has spread fear and confusion about the gluten-free status of Cheerios, and implied widespread gluten contamination in Cheerios. For example, the following statement attributed to the CCA was published on October 26, 2017 by Globalnews.ca: "[CCA] expressed doubt in the company's mechanical sorting system and claim of 100 per cent removal of cross-contaminants." Additionaly, Canadiangrocer.com reported in August 2016 that the CCA was, to paraphrase, "awaiting evidence showing the new line [of Gluten Free Cheerios] is 100% free of gluten." The article quotes Sue Newell, the CCA Manager, Education and Special Projects, as saying: "Our fear is that there are hot spots in their oats. Any given box may be fine, but every third or fifth box may not." Canadiangrocer.com has quoted the CCA's Manager making a very specific claim about the gluten-free status of Cheerios. If her claim is correct it would mean that 20% to 30% of all Cheerios boxes are contaminated with gluten above 20 ppm, and General Mills is producing millions of boxes of tainted cereal per month which are fraudulently labeled "gluten-free." When Celiac.com invited Sue Newell to further clarify her position she would neither confirm nor deny making the quotes, but instead said that her quotes were simply "media impressions." Although Celiac.com requested more clarification, Ms. Newell would not respond to further written questions (re-printed below) about her "media impressions." Celiac.com also requested that the CCA produce any evidence to back up their claims, but so far the CCA hasn't produced anything. In response to our questions (re-printed below), which mostly remain unanswered, the CCA demurred with vague claims about general levels of gluten contamination in raw oats, and even more vague claims about the unreliability of optical sorting systems in removing gluten. They referred to studies that, after further review, appear to be unrelated to General Mills' proprietary sorting and production processes. CBC reported on August 31 2016, that the "Canadian Celiac Association is warning against gluten-free Cheerios products over concerns the cereal is not 100 per cent safe for people with celiac disease." What does the CCA mean by "100 percent safe for people with celiac disease?" To our knowledge General Mills has never made the claim that their sorting process results in "100 percent removal" of gluten from the oats used in their Cheerios. It is our understanding that General Mills has only ever claimed that their process results in gluten levels under 20 ppm, which allows them to be labeled "gluten-free" in both the USA and Canada, and as such they are considered safe to consume for those with celiac disease. When Celiac.com asked the CCA to provide a source for the "100% free of gluten" General Mills claim, or for clarification of her "100 per cent safe for people with celiac disease" statement, no response was provided. Is the CCA hinting that the labeling standard for gluten-free products should be 0 ppm allowable gluten? Again, they would not answer this question. It seems that the CCA made this recommendation and their associated statements based not on independent product testing, or on any confirmed accounts of gluten-exposure in people with celiac disease who had consumed Cheerios, but instead on anecdotal evidence and innuendo. For their part, General Mills has at least publicly described their optical sorting process, and have gone on the record as saying that their raw unsorted oats contain anywhere from 200 ppm to 1,000 ppm gluten. They describe exactly how their sorting process reduces the gluten content in their oats to below 20 ppm, and how they then pulverize, process, and mix their sorted oats to make Cheerios (from Celiac.com's perspective it is this milling/pulverizing and mixing process that should eliminate any chance of "hot spots"). They have even applied for a patent on their optical sorting technology, and in order to receive this patent their process needs to function as described. Ultimately General Mills stands by their product every day by putting a "Gluten Free" label on every box right next to their trade mark. Remember Paul Seelig? Back in 2011, before we even had gluten-free labeling laws in the USA, he sold regular bread that was labeled as "gluten-free." He was tried and convicted of fraud and was sentenced to 11 years in prison. The idea that people can just slap a gluten-free label on a product that contains gluten above 20 ppm and somehow escape our judicial system, whether it be private attorneys who sue them or criminal prosecutors, is highly unlikely. Ultimately the CCA is calling General Mills, Health Canada and the FDA into question when they make unfounded claims based solely on fear and innuendo. The CCA is also casting doubt on U.S. and Canadian gluten-free standards. If 20% to 30% of Cheerios contain "hot spots" of gluten contamination, then why can't the CCA, or anyone else, produce a single box that is tainted? Where are the trial lawyers who ought to be lining up to sue them? Cheerios are are subject to regular, random testing by both Health Canada and the FDA. The FDA recently tested major American gluten-free brands for gluten-free labeling compliance and found that 99.5% of products tested are compliant with current gluten-free standards. The FDA found just one non-compliant product out of the hundreds they tested. They worked with the manufacturer to recall the tainted product and correct the manufacturing process. There is no indication that the non-compliant product was Cheerios or any other General Mills product. In this case the burden of proof for such extraordinary claims lies with the CCA, and not with General Mills. Someone can claim that the Earth is flat, or that humans never walked on the moon, however, the burden of disproving such claims doesn't lie with scientists who spent their entire lives creating a massive body of evidence which support what are now generally accepted facts, but with those making the extraordinary claims. Accordingly, it is only fair that the CCA must back up their claims with more than the equivalent of a vague conspiracy theory, which to disprove, would require General Mills to literally test every piece of cereal in every box of Cheerios (i.e., billions of boxes). General Mills returned our telephone calls and freely answered our questions. They provided a reasonable description of their sorting process and answered our questions about it. The CCA has been coy and evasive when questioned about their past statements, their claims about Cheerios, and their stance on the 20 ppm gluten-free standard, or any other standard for gluten-free labeling. Until such time as the CCA stands by their statements, and until they provide actual evidence to back up their claims, their claims should be regarded with skepticism. In their reply to our questions, the CCA included three links to articles they feel support their position on oats: https://www.ncbi.nlm.nih.gov/pubmed/21623493 Koerner et al 2011 http://www.sciencedirect.com/science/article/pii/S0308814616312614 Fritz et. al 2016 http://onlinelibrary.wiley.com/doi/10.1111/ijfs.13288/full Fritz et al 2016 Celiac.com addresses those studies in a separate article, entitled: Why Do Quaker and General Mills Approach Gluten-Free Oats Differently? Questions Emailed to the CCA by Celiac.com, followed by their response: QUESTIONS FOR THE CCA REGARDING CHEERIOS GLUTEN-FREE LABELING AND RELATED ISSUES: The standard for under 20 ppm allowable gluten in gluten-free foods remains unchanged. in Canada, the US, and the EU. The standard is supported by Health Canada, which says that gluten levels under 20 ppm are safe for the vast majority of people with celiac disease. The 20 ppm standard is also supported by the CFIA, the FDA, the EU, by scientific and medical data, and by all major celiac disease researchers. QUESTIONS: 1) Health Canada says that 20 ppm gluten is safe for celiacs. Does the CCA believe and support that standard? ANSWER: No Response. If not, what standard is safe, according the CCA? ANSWER: No Response. 2) Health Canada allows up to 5 ppm gluten in "Marketing Authorization" oats. Obviously, gluten content above 0 but under 5 ppm is not "100% gluten-free. Does the CCA have any problem with such "gluten-free" oats? ANSWER: No Response. 3) With respect to the gluten-free Cheerios products in Canada, Candiangrocer.com reported in August 2016 that the CCA was, to paraphrase, "awaiting evidence showing the new line is 100% free of gluten." Is that still the position of the CCA? ANSWER: No Response. 4) The Candiangrocer.com article also states: "Our fear is that there are hot spots in their oats," said Newell. "Any given box may be fine, but every third or fifth box may not." Is the CCA asserting that 20% to 30% of Cheerios boxes are contaminated with gluten? What is the basis for this claim? Is the CCA forming policy based actual official test results? ANSWER: No Response. 5) Similarly, the CBC reported on August 31 2016, that the "Canadian Celiac Association is warning against gluten-free Cheerios products over concerns the cereal is not 100 per cent safe for people with celiac disease." Can you clarify what you mean by "100% gluten-free" and "100 percent safe for people with celiac disease?" ANSWER: No Response. 6) In a recent article published in October 26, 2017, Globalnews.ca writes "[CCA] expressed doubt in the company's" mechanical sorting system and claim of 100 per cent removal of cross-contaminants. https://globalnews.ca/news/3826328/celiac-association-applauds-general-mills-decision-to-pull-gluten-free-label-from-cheerios/ ANSWER: No Response. 7) Again, can CCA clarify what it means by "100 percent removal" of gluten? ANSWER: No Response. 8) Also, we are unaware of General Mills ever making a claim that their sorting process results in a "100 percent removal" of gluten from the oats used to makes Cheerios, only that their process results in gluten levels under 20 ppm, and within the range for labeling product as gluten-free. Can CCA provide any source for General Mills ever making a claim that their sorting process for oats results in a 100 percent removal of all gluten? [http://www.foodbusinessnews.net/articles/news_home/Research/2017/10/General_Mills_details_gluten-d.aspx?ID=%7BD74CACED-0224-49C3-951A-4E62E87AA243%7D&cck=1] ANSWER: No Response. 9) Is it the position of the CCA that the standard for gluten-free labeling should be 0 ppm allowable gluten? If so, how would that be measured? What products would be able to makes such a claim? ANSWER: No Response. 10) Does the CCA have any scientific data that shows that gluten levels under 20 ppm are dangerous or harmful for people with celiac disease? ANSWER: No Response. 11) Does the CCA have any scientific data or medical testing to show that Cheerios do not meet the 20 ppm standard for gluten? ANSWER: No Response. 12) If Cheerios meet US FDA standards for gluten-free products, and routinely test at below 20 ppm gluten, does the CCA feel removing the gluten-free label in Canada makes people with celiac disease any safer? If yes, how? ANSWER: No Response. 13) Regarding CCA claims of member complaints about Cheerios: Is it not possible that people who claim an adverse reaction to Cheerios are actually having a reaction to the avenin protein in oats, or to higher fiber in oats? ANSWER: No Response.
  2. Hi there, I was just diagnosed (well sort of, the blood test was positive and the nurse said she was nearly certain based on what she saw in the biopsy but are waiting results from the samples) and Im dealing with a lot of the emotional stress with seemingly none of the support. I have received next to no info on how to actually go gluten free from any doctor and that is only part of the problem. Im wondering how long I could have possibly had this? Ive had symptoms that dont actually match celiac disease very well but closely enough? for years but none of them stem from eating foods containing gluten. Every once in a while (maybe 2-4 times a year) I have these attacks where no matter what I eat I get sick, during these attacks I avoided food but when Im finally able to eat again the foods that provide the most relief and ease as bagels and crackers. I cant even get liquids down have the time and soup always sits too heavily. I dont get reactions from gluten at all. The only reason I was tested in the first place was because I had taken some new hormone pill for an unrelated illness that set off a bad reaction at first and I just never got better. I do have to say after reading a few of these forums Im terrified about what awaits me in my 30's and 40's. Ive read so many horror stories about pain and complications I have to say Im in a little bit of a panic. I dont know if I can take anymore daily pain. I have endometriosis and pcos (poly cystic ovarian syndrome) and Im already in pain that some days is just too much to take. On top of that dealing with years of depression and anxiety (that I pray are not caused by celiac because that would mean Ive have celiac since I was 13). I have to wonder how much damage has been done and if theres a way I can avoid suffering that much more. Sorry this was long and a little hard o follow Im sure but I feel Ive received no information or support from my doctors and I dont know where else to turn.
  3. This is gonna be long! Hi, I'm Emma! I know that nothing short of getting tested will show for sure, and nobody but my doctor can tell me. All I'm asking for is opinions But in order for me to get a blood test I keep trying to explain my (extremely severe) fear of needles. I have to be heavily sedated and medicated in order to get it done and he won't move on from Valium which didn't work (and they gave me a big enough dose for a grown man, they said. It had no effect.) I asked people on quora about it and they all suggested like therapy and mental coaching but they don't understand that when I'm in that state I have physically hurt nurses, doctors, dentists- I can't be talked down at all and need to be sedated. Long story short, a blood test is a dream. My doctor also wants to check for anemia, hypothyroidism, PCOS, and something else I can't remember because of my symptoms. For starters, I know for a fact I'm gluten intolerant. It's a long story but I went on a pre-packaged gluten free meal diet for about four months and then when I went off it and had gluten it was like my entire brain swelled up. My partner said it was like I was emotionless. I couldn't think, or really put thoughts together. It felt like (and I literally did) I could stare at a wall with my mouth open drooling. It just dumbfounded me. I asked my gluten intolerant relative and she said I probably did have gluten intolerance. When I went back on my gluten free food for another three months, and then back off it again, and the same cotton-stuffed head feeling (among other things) came back, I knew it wasn't a fluke. Especially considering gluten was the only ingredient that changed when I did that diet. I've been extremely tired for my entire life, my doctors prescribed me adderall and Wellbutrin to keep me in a semi awake state. I've slept over 30- consecutive hours, and still woke up tired. This eased up with gluten free but considering I'm back eating gluten now (and have been for awhile...it's hard not to. I'm kind of gluten adapted at this point but can tell that a lot of thoughts are foggy and sort of out of reach. Not as clear as when I'm gluten free) my memory is kind of foggy and I can't recall if my sleep issues completely went away but I know they were a lot better. I have soft teeth, I get cavities from almost anything. I read that enamel erosion is common with celiac people. I read somewhere about skin elasticity with celiac disease. When I was growing up I got stretch marks really hardcore even though I was young and not severely obese (just a chubby kid. No reason for my skin to be so extreme. I'm just thinking there had to be another reason because kids have the most collagen in their skin, so why did mine tear so easily?) I have diagnosed depression, ADD, chronic fatigue and motion sickness (this doesn't necessarily have anything to do with gluten intolerance I just notice it eases up as well when I take gluten away.) it seems like no matter what supplements I take or changes I make nothing eases my symptoms but things really improve without gluten. As for digestive issues, those cleared up with gluten free too but considering I only tried gluten free when I was 20 (22 in two weeks), most of my life has been bad digestive issues so I don't actually know what's normal and what's not. Also, my dad (who I've always been more similar to in terms of genetics.) had a camera thing in his intestines done, and his results were what the doctors said were "irritation (I can't remember the word, I think it was irritation) consistent with celiac disease." This is all I can remember for now. Does anyone have any thoughts?