When a Gluten-Free Label Doesn’t Mean a Damn Thing

Are oats safe for those with celiac disease?

Quick Dude note: For anyone who has sent me an email looking for guidance in the past few months, I am way behind on emails right now. Hundreds in my inbox. I’ll do my best to get back to you…promise.

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Here are today’s celiac questions of the day:

Are non-certified oats gluten-free? Are they safe for those with celiac disease? Can a company legally label a product gluten-free if they use oats that are not certified gluten-free?

Good questions, all of them. Why am I bringing it up at this time? Let me explain:

Last week, I got a private message on Facebook from a fellow celiac. In 2015, she emailed Company X (I’ll explain this in a bit), who makes granola labeled “Gluten Free”, if the oats used in their granola were indeed gluten-free. Their response:

“No, our oats are not “certified”. In researching this question, while oats are considered free of gluten, cross contamination with other crops in the fields or other ingredients in a commercial kitchen space could occur. We do our best to keep our granola as pure as possible, and we are considering within the year to use certified organic oats. Have a happy healthy day!”

My quick reaction: They had to research the question? Seriously? They have a product labeled gluten free and they had to research the question? Ok then.

Anyway, she held on to the email and here we are in 2017 and she says nothing has changed and they are STILL being sold as gluten free. So I decided to reach out to Company X. Here’s how the conversation went down.

Me: Hi there. I hope all is well. I run a popular blog about living with celiac disease over at glutendude.com. Someone reached out to me about your products and the fact they say Gluten Free, but you are not using certified gluten-free oats. Cross-contamination in oats is a huge issue for the celiac community. Do you test your products for gluten before putting them on the shelves? Many thanks.

Them: Hello GD. No, we do not test for gluten content. Yes, oats are inherently gluten-free and cross contamination (could be) an issue. But…we do use exclusively “certified organic” oats in our product, (which only contains 4 ingredients, organic rolled oats, nuts, butter, and pure maple syrup). Over the almost four years we have been in business we have talked with many people suffering gluten intolerance at our in-store demos and simply advised them to proceed with caution or do not eat if unsure. We have had no complaints to date. Thanks for checking in with us and keep up the good work on your service to others in need.

Dude note: If something is labeled gluten free, I don’t wanna be unsure. Isn’t that why we have labeling laws? And they don’t even test for gluten?? No words. Ok…moving on.

Me: I’m going to have to send out a warning to my community. Oats ARE cross contaminated. By labeling your products gluten free and not testing is disappointing and potentially dangerous. Would you consider changing your methods to make it safe for us? Thanks.

Them: Send your warning my friend. It is your mission in life it seems. Can you give us info on where to have our oats tested? Thanks.

Dude note: Were the first two sentences sarcastic? Friendly? Just downright mean? I did not know how to take it. And then she’s asking me where to have their oats tested???

Me: Wow. Yeah…I’m a celiac advocate and it is my mission to help the community.

Them: As is ours, with pure food. We will check out our source, and go with certified free if it does not meet our expectations. Thanks.

And that was the end of the conversation. They said in 2015 they would look into it. 2 years later, they say the same thing. And what exactly are their expectations if they are not testing for gluten? So now let’s review my three questions and try to get some answers.

1. Are non-certified oats gluten-free?
Tricky question. The oats themselves are indeed gluten-free. But if they are grown/processed in the same facility that grows/processes other grains like wheat and barley, they are bound to be contaminated to the point they are not remotely safe. Take a look at the picture at the top of this post. Yes…that’s how contaminated oats are.

2. Are they safe for those with celiac disease?
Based on the answer to question 1…no, not unless they are certified gluten-free, which means they are grown/processed in fields that ONLY grow/process oats so there is no risk of cross-contamination.

Dude note: Please see the update below. I just found out that “Certified Gluten-Free” on oats doesn’t mean a damn thing. Just wonderful.

3. Can a company legally label a product gluten-free if they use oats that are not certified gluten-free?
According to the FDA, “any grain other than the gluten-containing grains of wheat, rye, barley, or their crossbred hybrids like triticale can be labeled gluten-free, if the presence of any unavoidable gluten due to cross-contact situations is less than 20 ppm.”

Since Company X is not even testing for gluten, I’d say the answer is a big no.

And this is our dilemma folks. As a celiac, we must be able to trust the “gluten free” label. But companies can do whatever the f*ck they want to do. Company X has been labeling their granola gluten-free for over 2 years without testing their product and they will continue to do so, unless we can get lucky and prove their bars are not safe.

And this is why I’ve been calling them Company X. While I totally disprove of how they are doing things, I decided not to publicly call them out until I had some solid data to see if their granola falls under or over 20ppm. So I am going to reach out to the Gluten-Free Watchdog and see if she can do some testing for me. And if anyone has the Nima Sensor and wants to give it a test, let me know and I’ll tell you what the product is.

Of course, testing one batch of granola is not definitive if the test comes back under 20ppm as one bag could be safe and another one not safe. But if it comes back over 20ppm, we’ll know for sure and that’s when I’ll notify who Company X is.

Isn’t having celiac disease fun?!

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Two updates written after the above post:

Update 1: It turns out I was 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.

>>> Please, please see Shirley Braden’s comment below for some VERY IMPORTANT INFORMATION.

Update 2: Ok…I’ve decided to share the name of the company that is misleading the celiac community with their oats. Company X is Beyond Granola from G-Nola. Not a national brand (yet) but available in too many stores to ignore. Why did I out them? 1) A lot of people asked me to and I need to protect the community. 2) If one person gets unnecessarily sick, it’s one too many. 3) Their original response to me was downright snotty. 4) They don’t test their product for gluten. Ever. 5) Maybe they’ll change their methods or at least their packaging (not holding my breath.)

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43 thoughts on “When a Gluten-Free Label Doesn’t Mean a Damn Thing”

  1. 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.

  2. 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!

  3. 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.

    1. 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

  4. 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.

  5. 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.

  6. 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

      1. 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.

      2. 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.

        1. 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.

    1. 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.

    2. 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.

    3. 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.

      1. 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!

        1. 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.

        2. 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?

          1. 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!

            1. 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.

  7. 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.

    1. 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.

      1. 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!

        1. 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.

      2. 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…

  8. 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.

  9. 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!!

  10. 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.

  11. 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.

  12. 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!!!!!!!

  13. 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.

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

  15. 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.

  16. 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.

  17. 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

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Who I am. And who I'm not.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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