Should Celiac ‘Leaders’ be Promoting Gluten-Free(ish) Cheerios?

should I trust gluten-free Cheerios?

Two things you need to know up front:

  1. This may be a long post, but it’s important so please stick with me. (Even if you’re not interested, it took me about 5 hours to write so just humor me.)
  2. The Celiac Disease Foundation is probably going to hate me (if they don’t already). If you are reading this CDF, I assure you it’s nothing personal. I am not attacking your integrity or saying you are awful people. I’m just questioning your judgement. Community first…that’s all.

Ok here we go.

Yes…believe it or not…Gluten-Free (??) Cheerios are still/back in the news. A quick recap for those new to the unending Cheerios saga.

  • In March of 2015, I was invited to the General Mills corporate offices to discuss the new, upcoming Gluten-Free (kinda) Cheerios. Hated the trip. Appreciated their passion. Came away so-so on the validity of their methods (using contaminated oats and mechanically sorting them to remove the wheat and the barley). You can read about it here.
  • Fast-forward to September of 2015 and many celiacs have complained about getting sick on the Gluten-Free (hmmm) Cheerios since they’ve been out. I questioned why some celiac bloggers were celebrating Cheerios when so many were getting sick. Take a gander here.
  • Let’s jump now to October of 2015 (yeah I know…time flies when you’re getting glutened). I had a back and forth with the management team at Cheerios regarding why my fellow celiacs were getting sick. They insisted, and I quote, “Cheerios are safe – and they are gluten free. But celiac disease is a complex condition, and dietary changes for people with celiac disease often require the assistance of a trained physician. Blah, blah, blah.” Got that? We were NOT getting sick from the Cheerios. Couldn’t be.
  • And what happened a few weeks later? Cheerios had to recall 1.8 million boxes of Gluten-Free (cough) Cheerios because…wait for it…they contained gluten due to an error in the production process. And guess when the error occurred? In July of 2015, when people were claiming they were getting ill. And why did they wait so long before announcing the recall? Because testing wasn’t done at that production facility at that time. No…really. You can read this staggering info here.
  • And lastly, we’ll move right along to August of 2016 (yes, we’ve all just aged a year) when the Canadian Celiac Association formally announced that they “recommend that people with celiac disease or gluten sensitivity DO NOT consume the gluten-free labeled Cheerios products at this time because of concerns about the potential levels of gluten in boxes of these cereals.” Peruse the juicy details here.

gluten free cheerios unsafeWhich brings us to July of 2017, also known as today. Word continues to come in that people are getting sick from eating the Gluten-Free (ahem) Cheerios. Not all people mind you but too many to ignore. Before I went to sleep (well insomnia…but you know what I mean) on Tuesday night, I asked my Facebook community their thoughts on the Gluten-Free (lol) Cheerios. It was an open ended question. I got 480 responses. I took note of 100 random answers. Here’s the overall breakdown:

  • GOT SICK – WILL NEVER EAT AGAIN: 43
  • DON’T TRUST – WON’T RISK MY HEALTH: 41
  • EAT WITH NO ISSUES: 16

So for those keeping score at home, 84% of the responses were negative. 84% of the people said NO WAY. I strongly recommend you read everyone’s comments. Eye-opening and honest.

On top of that, both the Gluten-Free Watchdog AND the Canadian Celiac Association, along with other strong voices in the celiac community, still recommend that they NOT be eaten and they are not guaranteed to be safe until they use certified gluten-free oats.

Enter The Celiac Disease Foundation

So then here is my million dollar question: As if it’s not bad enough that some of my fellow celiac bloggers continue to promote them, why in the name of Zeus’ butt hole (credit: Nicolas Cage, The Rock) is the Celiac Disease Foundation still promoting them? Why is their logo on EVERY SINGLE BOX of Gluten-Free (smh) Cheerios? You know and I know what the an$wer i$. Becau$e it’$ alway$ the an$wer. Here are the top sponsors of the CDF:

general mills sponsors CDF

Yep…they are all General Mills companies. Now look, the CDF is non-profit and I know they need sponsorship. But I figured there must be something else there. It can’t just be about the money. So I reached out to them a few days ago. Here’s the convo:

GD: Hi folks. This is Gluten Dude. I am a celiac advocate and run a popular blog about living with celiac disease over at glutendude.com. I am respectfully requesting you remove your logo from all boxes of Cheerios since they have NOT proven to be safe for the celiac community. I understand GM is one of your biggest sponsors, but it really should be community first. Please let me know your thoughts. Many thanks.

CDF: Thank you for your email. Cheerios has warranted that their products meet the FDA standards for gluten-free labeling. Since the voluntary recall of October of 2015, CDF has received no information from the FDA that Cheerios products pose a risk to people with celiac disease who can tolerate oats. If you have information that shows otherwise, we request that you forward this information to the FDA so action may be taken. The support of General Mills helps to underwrite the costs of celiac.org, a website used by more than 7 million people worldwide each year for diagnosis, treatment and support. Until such time that General Mills no longer wishes to support the celiac community, their gluten-free products will continue to bear the Celiac Disease Foundation logo.

cdf sponsors GM

A few point of interest here:

  • I just love how they note that the recall was “voluntary”. Like it was some kind of humanitarian effort on GM’s part.Please.
  • The FDA has indeed received complaints from the celiac community about the Gluten-Free (c’mon) Cheerios.
  • Instead of “Until such time that General Mills no longer wishes to support the celiac community, their gluten-free products will continue to bear the Celiac Disease Foundation logo.”

    shouldn’t it be…

    “Until such time that General Mills can prove 100% that their gluten-free products are safe, we will remove the Celiac Disease Foundation logo.”

Also note that the CDF was promoting the Gluten-Free (pfft) Cheerios BEFORE the product even came out. Here is what they posted on their Facebook page on March 25, 2015, during the GM meeting that I was at when we didn’t even know what their protocols were:

“CDF’s CEO is currently at the Gluten-Free Summit to learn about the new process to remove gluten from oats. This development was three years in the making! Which flavor of Cheerios are you most excited for?”

You got that? Even though we all had NO IDEA whether they’d be safe, they were already telling their large audience, with no hesitation, to get excited. That. Makes. Me. Sad. Their top priority should be to protect the celiac community. End of story.

I also reached out to Cheerios yesterday privately to see if they wanted to say anything on their end before I posted this and their response was typical corporate crapola: “Thank you for taking the time to contact us. Please reach out to our Media & News hotline here: 763-764-6364. If you leave a message, calls will be returned 8am – 5pm CST weekdays. You can also contact us via email at: media.line@genmills.com.”

There is so much more I can say on this topic, but I’m running out of juice and I know you’re running out of time. So I’ll finish with two quotes that I received in the past 24 hours.

The first came to me on a Facebook private message from someone who is active in several celiac support groups, obviously very passionate about the subject, and very protective of the celiac community. Within her long message, she said:

If you have Celiac Disease and want to play Russian Roulette with your healing and health, by all means have fun. Please do not EVER purposely recommend that others do the same. When I hear,” I eat them all the time and I am fine.”, I want to stab my eyes out! Just a note, those folks that “eat them all the time and are fine”, I have found, have trouble getting well and can’t figure it out. I wish that those with Celiac Disease wouldn’t try so hard to hold on to the products of the past, but let this one go find the new favorites of their future.

And the second one came from one of the the biggest voices in our community via text last night. She said:

While CDF has some very helpful, very worthwhile projects which are funded in part with this money, by putting their logo on boxes of products which are neither tested by CDF nor does CDF apparently have any control over their procedures, consumers are led to believe that they are in some way safer buying these products … which they are not. I understand why CDF accepts their money; I don’t understand why they allow their logo to be used AS IF it was a seal of approval.

Amen to that. If you want to request that the CDF removes their logo, hit them up (respectfully) on Facebook here.

And one final thought. The CDF calls themselves “The nation’s public voice for celiac disease and gluten-related disorders.” When it comes to this topic, you do not speak for me.

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34 thoughts on “Should Celiac ‘Leaders’ be Promoting Gluten-Free(ish) Cheerios?”

  1. Great Job GDude!!! Five hours well spent.

    Even with all of your loveable quirks and snarkiness ( I’d insert the laughing crying emoji here but software won’t let me), I’d trust what you, Jen and Jules have to say over ALL of the foundations, corporations and other faceless entities all rolled up into one big fat gluten filled enchilada.

    After 33 yrs of practicing law, I usually smell rats pretty easily. The advantage I get with you, Jen and Jules, like with me, our very lives depend upon not eating even a smidgen of gluten so truth is much easier to discern and distribute because death by gluten is a much better motivator than shareholder and financial demands. I’m most thankful to have found you 3 and what a healthy difference each of you have made in my life and the lives of my family.
    —-
    “And you shall know the truth, and the truth shall make you free.”
    John 8:32

  2. As always, I thank you. Personally I won’t take the risk with the Cheerios. I thought about it, then saw your first blog about them and said no thanks!

  3. Gluten Dude, love it. I’d been wondering about this topic lately so thank you for the recap and current info. Lead me to a question though, hope I didn’t miss the answer is you’d already addressed it, doesn’t GM have other products they claim as GF? Do you know if their standards are the same for those? Just curious. After the 2015 debacle we choose to stay healthy.

  4. Thank you for this post and for advocating so tirelessly on behalf of this community. We are mostly dependent on each other tonfind safe sources of food, yet that “I do it so you can too” attitude drives me crazy, as I often hear it from Cd friends who are constantly sick. I’ve never eaten GF Cheerios out of skepticism, then out of fear of contamination. I’m going to stick to that and go with other, healthier breakfasts, thanks. You know, the kinds that won’t kill me. 🙄

  5. Dude,
    Thanks for all your hard work and great writing style. I never liked Cheerios; even 20 years ago when
    I didn’t know I had CD. So I am wondering when I see a package that has “Certified Gluten Free” GF circled in black; is that certified by the CDF? Or by some other organization that knows what they are doing? I guess, in other
    words does” certified gluten free” actually mean anything?

      1. As a long -standing Branch Manager with GIG , I am frankly disturbed that they have approved this product as their testing and approval procedures are usually extremely strict. I have several “silly sensitive” members who tried the product based on both the gfco and cdf seals of approval and have gotten sick. Too many, in fact, to discount. There are some who claim they are fine with it. Oh well.

            1. Perhaps was. The box illustrated on their web site right now has a circular symbol which appears to be of their own design. The text that forms the circle says “SIMPLY MADE” above a large horizontal “Gluten Free” and “GROWN. MILLED. TOASTED.” in the arc below the “Gluten Free” claim. Below this there are two lines of text, “NO ARTIFICIAL FLAVORS” “NO ARTIFICIAL COLORS” with a horizontal line between them. The smaller text is indistinct in the illustration on the cheerios.com web site, but shows up clearly on Amazon when you enlarge the view. (I haven’t gone to a store to check what’s being sold locally.) I checked the GIG/GFCO website and downloaded their 2017 GFCO Buyer & Distributor Guide PDF; there is no mention of Cheerios in that.

              I see no indication of any CDF affiliation in the illustrations on either the Cheeios web site or Amazon, but Cheerios is listed and illustrated on the CDF web site itself, and General Mills is listed as a “proud sponsor”, so it’s clear that they admit to the connection.

      1. At no time has GFCO/Gluten Intolerance Group NA, ever endorsed Cheerios as a certified Gluten free product. I regret my earlier comments and believe what I saw was another product entirely and I should have known better. As a Branch Manager with GIG I am well aware how stringent the GFCO requirements are. I deeply regret if anyone was misled.

  6. Shameful! I wonder what the percentage of GM’s many employees that have celiac disease is. Are they able to speak up without fear of losing their jobs. Thank you GlutenDude.

  7. Big corporations, Big Pharma, and some large non-profit agencies are driven by money. There is no money in keeping Celiac people healthy. There is money in lying to them. I find the same issues with the American Diabetes Association. Not all bad but not entirely trustworthy. Thank you for your continued advocacy.

  8. Jeff Weininger

    I complained to them as I determined it was the gf cheerios that made me sick and the help line offered me coupons for more general Mills products. Thanks but no…

  9. Well said. I find it undermines the credibility of CDF when they keep their logo on Cheerios. Just makes life harder for Celiacs when they don’t know what they can trust.

  10. As a Branch Manager, I am very disturbed over these findings with Cheerios- and not surprised. It was good to see the voices of Jen and Jules raised in unison against this product- the same as I have been telling my members for two years: eat at your own risk! GM testing procedures are not being followed correctly and to eat them is playing Russian Roulette. You are harming your body beyond repair and not helping you heal. If those with NCGS can eat them? Fine, that’s their business because they are NOT causing permanent damage- you are. I get really annoyed with celiacs who think they can safely cheat and get away with it. STOP CHEATING!

    1. Russian roulette is a particularly apt characterization of the situation. If a few grains of wheat or barley were included in a batch of oats, even after sorting, and than that batch is milled into flour, some of the flour could have little pockets high in wheat/barley flour. Depending on how their processes work, the Cheerios made from that flour could have a few (dozen? hundred?) that contained much of the wheat/barley. Given their sampling technique, they could well miss the boxes, or even the individual Cheerios, that held most of the contamination. Definitely Russian roulette.

      It seems clear to me (but I’m not a cereal manufacturing engineer), that they need to do batch runs and very thoroughly mix the oat flour for each batch, either while it’s in the flour stage or after it’s mixed with whatever liquids are used to make the Cheerios batter. But the mixing has to be extremely thorough, so that any pockets of wheat/barley flour are distributed evenly throughout the batch. Then if the batch tests too high in gluten, it could be diverted into non-GF food production. It’s a simple approach, although not necessarily easy. Otherwise consumers are playing Russian roulette.

  11. So, basically, the CDF is the BBB for gluten free foods. If a company is willing to give them money they will put the CDF logo on products to make people with Celiac Disease or unsuspecting parents of Celiac children feel safe. The BBB will give any business an A+ rating for a yearly membership fee. No difference in my mind.

    Thanks for keeping this issue updated for the newly diagnosed.

  12. It’s groundhog day. I’m caught in the “don’t eat that stuff” time loop. But, don’t eat that stuff if you want to heal and thrive with celiac disease. There are so many more nutritious choices than boxed cereal that may (or may not) contain gluten.

  13. I know this is probably a stupid question, as my son was newly diagnosed I saw cheerios advertised and was excited to have some things not change for him, however, he was still getting sick too. So now my question is, if anyone could help, should I be concerned about ALL General Mills products? Lucky charms too? Chex? It’s hard enough to get my pickier than ever Celiac child to eat as it is!

    1. Krissy, Don’t risk it, your child’s health isn’t worth it. There are plenty of GF oat based cereals that are safe out there, I wouldn’t take a chance on any GM product. Large corporations care more about profit margins than the health of their customers. If you doubt that, look at the crap they have been pushing on us for years and the resulting increase in obesity and diabetes.

  14. Dude, thank you once again. I’ve was diagnosed 15 years ago, so I have a pretty good understanding of what to trust and what not to trust. I would never eat the Cheerios. But if I were newly diagnosed, or the parent of a newly diagnosed child, I would likely see that logo that appears to be a seal of approval on those cereal boxes and feel reassured they were safe to eat. That’s unconscionable. The CDF have no credibility. If they can’t fund their programs any other way, then they shouldn’t exist.

    After GM’s initial patronizing response to the early reports of reactions from the Cheerios — blame those silly hypersensitive celiacs, who can’t possibly recognize their own symptoms for what they are! — any organization that claimed to care for celiacs should have steered way clear. Some things are just unforgivable.

    1. Perfectly stated! I dissapointed in General Mills for there careless and greedy decisions, but I’m beyond angered at CDF who has betrayed the trust of the very people it was founded to server! Unforgivable!

    1. Hi Ali,
      I never promote processed food unless in a pinch and I have to eat something. But, if I were to eat processed foods, i.e. boxed cereal, I would go with a SMALL company (ies) and always organic. They tend to have higher ethical standards. If you have a health food store in your area, I’d go check them out.
      For me, I like hot org. buckwheat cereal (it is less processed). Sometimes I add an egg to the water (or milk) to pump up the protein, and add a small amount of fruit and lots (depending on your weight, 1/2 – 2 cup) of nuts and or seeds.
      I usually like to eat dinner for breakfast, it stay’s with me longer. A chicken thigh or 2, and 6 to 9 cups of veggies (before cooking) lasts a long time. I’ve been eating mostly whole foods for just over 2 yrs and feels SO much better when I stay away from overly processed foods. I hope you try getting away from all processed foods; eating well after CD is imperative to getting well and staying well.
      Be well!

      1. I have to agree with you, and it is even more proof to the old adage, eat like a king at breakfast, a prince at lunch and a pauper at dinner. Meaning quite simply eat at least 40% of your day’s calorie total for breakfast- 35% at lunch, and 25 % at dinner. It seems to set up your body for the day– after all, most of us do very little after our evening meal. so why consume all those calories at night- It makes perfect sense to eat that way too- try it! A bowl of lentil soup at night is loaded with healthy plant proteins and veggies with few carbs and lots of fiber- enjoy apple with an ounce or two of good cheese and a couple of whole grain crackers- BINGO- Enjoy a steak, grilled chicken breast eggs or fish for breakfast with veggies and fruit–you will never miss the bread. Try a healthy salad a lunchtime with nuts. seeds, chick peas avocado, and various greens. I am surprised how much better I feel and lost weight without giving up anything. Also paleo pancakes and high protein waffles work too.

  15. Thank you SO MUCH for sharing Gluten Dude for all your hard work and research. Shame on CDF, I hope big time that all in this community will call or write to the company (s) and complain. We ALL need to put the pressure on.

  16. Has anything come of this? As a person with celiac, it’s extremely upsetting yet not at all surprising– to those thing that conspiracy is BS. Did you actually read the full thread? Or did u just not put two and two together?
    I desperately want to do something to change this!!! What can we do gluten dude and friends?

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Who I am. And who I'm not.

Who I am. And who I'm not.

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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