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43 Comments

  1. 1

    Alysa

    This is maddening! Looking forward to the testing.

    Reply
  2. 2

    BriAnna

    Gaaaaaaah so frustrating! As if living with this freaking disease and reading, researching, inspecting every single item we use in life ever again isn’t maddening enough let’s add food manufacturers who give two shits about safety and accurately labeling their foods?!
    I’m so f’ing over this crap. And now totally looking sideways at the granola I bought this weekend that’s sitting in my pantry… which I’ve never eaten post diagnosis so lord knows if it’s actually legitimately gluten free.
    Jesus man why is this the reality for our community?? Infuriating. I’d like to respond to the smug associate who said this to you and explain I and others in community thank god for you and your warnings because POS companies and their associates don’t understand or give a crap the pure hell we experience when we trust the label and ingest their poisonous products. Grrrrrr I’m fired up.

    Reply
  3. 3

    Melissa

    What…the…..****…………

    Really? THAT was their response? Honestly, just their lack of customer service skills and their passive-aggressive attitude toward a valid and serious concern would be enough for me to never again buy their product.

    Okay, you really, REALLY need to report back who company X is when you’re ready to do so!

    Reply
  4. 4

    Natasha

    This explains so much. Why I’ve been feeling so sick this last year. I’ve been eating things that are labeled gluten free…like honey nut cheerios and been feeling sick. It was maddening cause I barely eat anything. At the end of the day you can’t trust a gluten free label then you have to just stick to rice, beans, vegetables, fruit, meat.

    Reply
    1. 4.1

      Tara Reece

      Cheerios put me in the ER I could not understand why I was so sick. GD has several cheerios articles on here very good read

      Reply
  5. 5

    MaryKate

    Dude — I have a Nima sensor and a non-gluten-free partner (who eats everything we buy that the Nima rejects). You can PM me, and if I can find it, I’ll test it.

    Reply
  6. 6

    Meagan

    I love their “but it’s organic” reply! As if the whole 6 weeks I’m suffering from ingesting gluten, I’ll be thanking them for giving me the cleanest, purest, pesticide-free glutening possible.

    Reply
  7. 7

    Shirley Braden

    GD–While I appreciate you pursuing this issue with this particular company, I have to tell you the problem is much, much bigger than even you have stated and not everything that you have said is completely accurate. First, you are not correct in saying “they are certified gluten-free, which means they are grown/processed in fields that ONLY grows/process oats so there is no risk of cross-contamination.” That is what the companies who use mainstream/sorted oats often want their customers to believe, but it is simply not true. It’s really important to address this issue because many in the gf community are under this misconception.

    Only a fraction of the companies that label their oat and oat products “certified gluten free” are using oats grown using the “purity protocol,” which is the standard that was accepted as the requirement to label oats gluten free after the study on mainstream oats showed that they contained very high levels of gluten (e.g., 1861 ppm in one Quaker sample) and were not safe for the gf consumer. (That study was led by Tricia Thompson and its findings were published in the New England Journal of Medicine in November 2004.)

    Per my understanding, it was only after the gluten-free labeling rule (note that it’s a rule, not a law, which is very different) into effect in August 2014 that the gf community realized that there were no specific statements made regarding oats. That meant that oats were now lumped in with all the other products, specifically, that it was up to the manufacturer to ensure they were gluten free before they labeled them gluten free. No purity protocol was specified, no testing was required, etc.

    Yesterday the FDA put out a puff piece on their site basically saying that gf labeling is working like a charm. Their article included this Q&A: ”

    Q: After the rule went into effect, did the FDA do anything to ensure that products with gluten-free labels were in fact gluten-free?

    D’Lima: Yes. Earlier this year we released the results of a sampling assignment in which 702 samples from more than 250 products labeled “gluten-free” were analyzed. Only one of those products did not comply with our labeling requirements. That product was recalled and subsequent sampling did not find any products that violated the regulation. We were very encouraged by these findings.”

    Despite this statement (and I’d be very curious to know which products they tested), we know that the picture is far from rosy. “Gluten-free” labels are slapped on lots of products that are not truly gf and some of those products even show a gluten ingredient in the listing of ingredients despite a “gluten-free” label. That latter facial misbranding is the focus of Tricia Thompson’s current petition to the FDA–and everyone who wants truly gf products should be commenting on that petition.

    Tricia has also shared a listing of the companies that offer certified gluten-free oats that are actually purity protocol oats on her Gluten-Free Watchdog site. One look at this listing shows that many companies that sell oats and call them “certified gluten free” are not in this listing. The one that is missing that most folks are familiar with and use as their supply of “gluten-free oats” is Bob’s Red Mill. They admitted in November 2015 that they were using both purity protocol oats and sorted oats in their gluten-free oat products. In other words, no longer were their oats strictly purity protocol oats so, no, they shouldn’t even use the term purity protocol oats ever IMO. Previously, back in July 2011 for certain (as I noted that info then) they had stated that they were using purity protocol oats and used terms like “dedicated fields” and “dedicated mills” on their packaging.

    I have personally contacted many other companies to see if their “certified gluten free” oats are truly purity protocol oats. The answer is almost always “no.” They are using mainstream oats which are sorted to separate out the gluten grains, just like General Mills does with the oats used in their “gluten-free” Cheerios and Lucky Charms–which we’ve been reminded over and over are not truly gluten free.

    Some of the other companies that have told me their “certified gluten free” oats are NOT purity protocol oats are: Purely Elizabeth, Cream Hill Estates/Lara’s Gluten-Free Oats (still have wrong info on their site although they told me over a year ago they would be fixing it!), Bakery on Main, Nature’s Path, Kind products (bars, granola, etc.), and Rule Breaker are just SOME of the companies that say gluten free or “certified gluten free” and don’t use purity protocol oats.

    “Certified gluten free” should only mean that a third-party inspection agency has tested the products to ensure they meet the ppm level required for certification. Certification by GIG’s Gluten-Free Certification Organization (GFCO), for example, means that the products test below 10 ppm. Two more important notes here … first, not everyone that uses the term “certified” actually has a third-party inspection agency doing their certification. Bob’s Red Mill, for example, does not. Second, testing of these sorted oats is far from straightforward. Gluten-Free Watchdog has shared several articles on studies done by Quaker (ironically) that show that testing and getting less than 20 ppm with oats doesn’t really provide a “warm and fuzzy”–an accurate picture–for the gf community. There are “hot spots” of gluten grains that make the testing worthless in many cases. That situation is what seems to be the cause of so many being sickened by Cheerios and Lucky Charms.

    Okay, this is a very long comment, but I believe it’s important for folks to know that “certified gluten free” does not mean purity protocol, truly safe oats. In some cases, it doesn’t even mean the testing (faulty as it is when it comes to oats) is actually independently verified. And “gluten free,” as you pointed out, can mean absolutely nothing. I think this is such an important discussion because in addition to the issues with not being able to trust the “gluten-free” label, many who have been sickened by “gluten-free” oats and believe that they don’t tolerate oats really are simply reacting to the gluten present. They may do just fine with certified gluten-free purity protocol oats like those from companies like Gluten-Free Harvest, Gluten-Free Prairie, GlutenFreeda, Avena Foods/Only Oats, Montana Gluten Free, Libre Naturals, Step One Foods, and Glanbia Nutritionals OatPure.

    Thanks,
    Shirley

    Reply
    1. 7.1

      Gluten Dude

      Sigh. Thanks for the education Shirley. Just made an update to my post pointing to your comment.

      Reply
      1. 7.1.1

        Shirley Braden

        Thanks, GD. If the people at the FDA and the companies that feed us truly wanted us to be safe, none of this would be so complicated. With the gluten-free labeling rule and more companies wanting a piece of the gf market while maintaining the lowest costs and their lobbyists entreating the FDA to work with them over the gf community, it’s becoming increasingly difficult to trust labels. We’re regressing IMO.

        Reply
      2. 7.1.2

        Daniel

        GD, if I may, shirley’s comment is SO important i urge you to post it as an addendum to your post as opposed to telling readers to look in the comments. Just an unsolicited suggestion.

        Reply
        1. 7.1.2.1

          Gluten Dude

          Who asked you? Oh…wait a minute…that’s why it’s an unsolicited suggestion (lol). I just updated my update above to make it a bit more obvious they should read Shirley’s comment.

          Reply
    2. 7.2

      Brenda

      Thank you, Shirley, for the information! I quit using BRM “gluten-free” oats as soon as I heard they used sorted, traditional oats. That explained some of the symptoms I would get after eating their not so GF oats.

      Reply
    3. 7.3

      Dennis Hemingway

      Thank You for this information.

      Reply
    4. 7.4

      BriAnna

      Oh my gaaaaaah this explains why I felt so horrible lately!! I found Purely Elizabeth granola at Target recently and was so excited, I’ve been sick ever since. Damnit this lackass labeling crap is really ridiculous.
      And the brand I found that I haven’t tried but is sitting in my pantry right now is Kind DOUBLE DANGIT. I knew better, sigh.
      Thanks for such a long and detailed comment… I’m throwing away the 3 partially eaten bags of Purely Elizabeth IMMEDIATELY.

      Reply
    5. 7.5

      LV

      Pamela’s does not use purity protocol in their products either. I wrote and asked. They use sorted.

      Reply
    6. 7.6

      Meg

      Thank you for sharing this information, Shirley! I’ve been wondering about oats for a long time. I was reacting to Kind granola bars for a while before I realized they were the cause.

      Reply
      1. 7.6.1

        Shirley Braden

        You’re welcome, everyone. If you call a company and they won’t tell you if they use purity protocol oats or sorted oats, then you can assume they’re using sorted oats because if they were purity protocol oats, they’d be happy to tell you that! One company that said they would not divulge the type of oats they use for their “gluten-free” oats is Nuts.com. When companies don’t reply to your inquiries on whether they use sorted or purity protocol oats, that’s another indicator that their oats are not purity protocol.

        LV–Thanks for sharing the info on Pamela’s using sorted oats as well. That’s what I thought since they were not on Gluten-Free Watchdog’s purity protocol oats listing, but I didn’t have specific knowledge of their situation.

        I know there are many more companies that use sorted oats that we have not addressed here. Please don’t eat oats or oat products until you’re sure that they are certified gluten-free purity protocol oats!

        Reply
        1. 7.6.1.1

          Dee

          Thank you Shirley for all you have shared. I don’t eat oats, ever, I get sick every time, maybe this is why. I have used Nut.com, but never for oats. They seem so nice, it is sad that they are not forthcoming. I might have to give them a call :)

          Dude, I love your tenacity!

          MAN there are a lot of smart folks out here in CD land.

          Reply
        2. 7.6.1.2

          daniel

          Shirley, as far as i can tell the only oat companies on the safe list that also have organic oat options are GF Harvest and Montana Gluten Free. Do you know if that is correct?

          Reply
          1. 7.6.1.2.1

            Shirley Braden

            Daniel–That’s not something that I have done any research on but simply looking at the info on the sites of the companies that grow and/or use certified gluten-free purity protocol oats (per the listing on Gluten-Free Watchdog’s site under the “News” category), it appears that GF Harvest, Montana Gluten Free, and Avena Oats (which is sold as Only Oats) all offer organic options. Some of the other companies that have certified gluten-free purity protocol oats or oat products actually sell products from one of those three or use their oats as their source of safe oats. And sometimes those safe oats are organic. For example, GF Jules sells products from GF Harvest that are organic. Several companies use/sell oats from Avena Oats, but it’s not readily apparent to me if they’re organic. Hope that info helps!

            Reply
            1. Shirley Braden

              Dee–Nuts.com has been great in so many areas but they refused to answer any questions on their “gluten-free” oats. Hopefully, you’ll get better results when you call.

              Reply
    7. 7.7

      Sheri

      So thankful for this information! Awesome research!

      Reply
  8. 8

    Becky

    I was repeatedly ill for years with CD and also Dermatitis Herpetiformis, I just couldn’t seem to get on top of my gf diet. I went through everything with my UK dietician and she came to the conclusion that maybe I am allergic to avenin (protein in oats). I’ve never met anyone else allergic to avenin but I stuck with it and haven’t eaten oats for years. Reading this thread makes me realise that its likely I’m not allergic to avenin but instead was being repeatedly made sick by contamination. This makes me so furious as its such a simple, good source of nutrients being spoiled and lied about.

    Reply
    1. 8.1

      Marie

      You may also want to consider cross contamination in lentils, beans and rice. I was sorting thru a cup of lentils, looking for rocks and sticks as the label always tells you to do, and I found 9….NINE ….wheat berries! In one cup. No wonder I was still ill! So, now I only eat lentils and beans from Edison Grainery, because the owner’s wife has celiacs, so he ‘gets it’. And I stay far away from any and every oat product as I do not trust, nor can I believe there is a way to guarantee, their safety. I have never had a problem with any of Lundberg’s rice products. I have with most other rice. Again, rice is inherently gf, but cross contamination in processing is rampant.

      Reply
      1. 8.1.1

        Adam

        Another endorsement for Edison. I think that in addition to the owner’s wife, several members of their family have Celiac, so points for “getting it,” but they also are much more customer-focused as a family-run business (when I mentioned our two toddlers with CD in a thank-you note to them, they threw in some extra GF breakfast food! Talk about “getting it.”).

        Most importantly, they independently test. We get all our pulses from them (lentils, beans, chickpeas), plus their quinoa is excellent!

        Reply
        1. 8.1.1.1

          B

          Edison’s Grainery has been lovely for me. I tolerate their lentils just fine, while prediagnosis generic lentils made me very sick. I especially like their variety; it makes eating fun again. Lundberg is great too.

          Reply
          1. 8.1.1.1.1

            Shirley Braden

            Others’ experiences with Edison have not been the same. Gluten-Free Watchdog has written about gf consumers finding gluten grains in lentils from Edison several times, including here: https://www.glutenfreewatchdog.org/news/more-foreign-grain-found-in-edison-grainery-lentils/

            Reply
      2. 8.1.2

        Luna

        I had to cut lentils out completely. Got sick too many times. And I too found wheat in mine. That’s when I clued in.

        The other issue I want addressed at some point is cross contamination in flax. Why would oats have a problem but flax be fine? Same growing environment, same practices…

        Reply
  9. 9

    Kate

    Who is this company? I want to know who to avoid.

    Reply
  10. 10

    Helen

    I read about purity protocol oats a little while ago and I stopped buying oats that do not come from manufacturers who use purity protocol. Unfortunately, that means that I often just do not eat oats or items containing oats because it is difficult to know where the oats in a particular item originated. Maybe I am overly cautious, but if I don’t KNOW for sure then I don’t eat. Sadly having the GF label is not reliable. I do hope you publish the company name soon, although it is a good bet that I do not buy from them.

    Reply
  11. 11

    Sheila

    GD, Thanks so much for having our backs! There is no denying that it is VERY complicated trying to stay healthy as a celiac. I avoid oats unless I know that they are purity protocol grown (so actually eat very little) and have become more and more reliant on the GFCO certification on products. Because, making money off GF products is more important to these companies than actually making sure that they are contributing to our good health! Thanks a lot, fad GF dieters and all those who cater to them!!

    Reply
  12. 12

    Ellen

    I was diagnosed back when oats were still on the forbidden list, and I’ve never been comfortable with the the thought of reintroducing them into my diet. I have never eaten a “gluten free” product with oats of any kind in it. I just do not trust them — any of them.

    Reply
  13. 13

    J

    Oust the company. It is a huge issue companies need to strictly adhere to. I say call them all out until changes in labeling are made.

    Reply
  14. 14

    B. R. Gray

    Want to hear another one????
    I purchased “Boulder Organic” Gluten Free Soup in the Deli section.
    I had heard it was great. I heard it was Safe from a GF Site.
    I’M SOOOOOOOOOOOOOOOOOO SICK!!!!!
    Do Not Buy this Stuff!!!!!!!

    Reply
  15. 15

    Anne

    Thanks, Dude! You are amazing!

    I cannot eat oats at all, I swell up like I am several months pregnant; but post diagnosis we found certified (truly) gluten free oats from Ireland and from a farm in Montana. My info is five years old, but at that time, I thought we learned those were two of the very few truly safe oats. (Don’t remember the names of the brands). Crockpot granola is super easy to make, if you need a granola fix.

    Reply
  16. 16

    VL

    Has anyone tried the Trader Joes GF rolled oats? The package describes their growing process and it does indeed sound like purity protocol.

    Reply
  17. 17

    Ross Raby

    some sources make all sources look bad.
    glutenfreehosts.com really is UNDER 20 ppm

    Reply
  18. 18

    Galwayfan

    Back in the dark ages when I was diagnosed, oats were 100% forbidden. The protein avenin was considered too similar to the other glutens that cause intestinal damage. Later were were told to consume only a half a cup a day if we had a celiac diagnosis. Some people still couldn’t tolerate any oats. I’m in that group. This is no big deal for me as I never go near anything made with oats. Good luck to all who continue eating oats. It may be the oats themselves that actually make you feel bad.

    Reply
    1. 18.1

      Jane

      Yes, it could be as per this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4119590/ I have also read another study done in Italy that confirmed that some varieties of oats made all celiacs react while others did not.

      Reply
  19. 19

    Shel

    Thank you for trying to keep us safe Mr. Dude! I have one hell of a month and somehow got really really sick to the point I was throwing up some blood! My GI Dr. thinks its from cross-contamination, with things not being celiac safe I am now thinking he is right. Again thank you for your dedication to the Celiac community.

    Reply
    1. 19.1

      Dee

      Bummer Shel, that cross contamination is a bear! Hope you get to feeling better sooner rather than later :)

      Reply
  20. 20

    Dee

    Just curious, I have just as much problem with rice (seizures, stomach cramps, and the big D), if not more than I did with gluten. Anyone else have trouble with it? Even cross contamination is an issue.
    Thanks,
    D

    Reply

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