I know this post might not be well-received by some in our community. Nothing personal I assure you. But I’m confused. Like really, really confused.
As a celiac, I have a responsibility to myself. That is to eat 100% gluten-free, to treat my body well and to reduce the risk of getting sick as much as humanly possible, while still living my life and not being consumed by my disease.
As a celiac advocate, I have a responsibility to the community. That is to spread awareness and more importantly, spread the truth. That is why I call out Udi’s. That is why I warn you about Omission Beer. That is why I call BS on the media so much.
So as an advocate, I would NEVER advise you to eat something that has not been proven safe and I would NEVER celebrate said product either.
Then please someone explain to me why so many celiacs are celebrating gluten-free Cheerios like it’s the second coming or something, when so many are getting sick on them?
For those new to the situation, let me do a quick recap. Cheerios is now producing gluten-free Cheerios. It’s been years in the making. Instead of using certified gluten-free oats, they are using normal oats (which are highly contaminated with both wheat and barley), and using a mechanical sorting process to remove as much of the nasty little grains as possible, so the final product is under 20ppm.
Their testing methods, to put it bluntly, kinda suck. Instead of testing individual boxes, they are taking multiple boxes, mixing them together and then testing the combined batch. So theoretically, ten boxes could be at 15ppm and one box could be at 80ppm, but when you mix them together, it will test under 20ppm. Yet that one 80ppm box may make it on the shelf still. This is called “mean” testing, which is pretty accurate because although GM may not “mean” to be getting celiacs sick, this kind of testing is not stringent enough and is pretty “mean” to those in the celiac community. You know what I “mean”?
When I was out in Minnesota at the GM headquarters with some of my fellow advocates, I asked GM if they would publicly release the testing results. Not only was the answer no, but I got shouted down by a few of the advocates saying they shouldn’t have to. That was pleasant.
The fact is…many celiacs are getting sick from eating the Cheerios. Real sick. Are they reacting to the fiber? Possibly. Is it something totally unrelated to gluten? Maybe.
But until Gluten Free Watchdog gives it her blessing, I cannot recommend any celiac even remotely eat them.
But others are. In droves.
Hey…it’s a personal choice. If you think the risk of getting sick is worth the reward of having boxed cereal, go for it. Your body. Your call.
But can we please just stop the cheer-leading?! Can we stop the promotions? Can we stop celebrating gluten-free Cheerios when they may be actually making your fellow celiacs sick?
I’m concerned. I’m troubled. And yeah…I’m a bit disgusted.
Did you know that GM is actually paying bloggers to promote the Cheerios? For the record, I have NO issues with bloggers monetizing their efforts. Zero. Heck…after three years, I started to do the same a bit (Dudette in college…yow$$$a!!). But it’s one thing to have ads or do giveaways. It’s a completely different story when you are encouraging others to eat something that may not be safe. Yet I see it all over Twitter and on far too many of my fellow celiac’s blogs. It saddens me that there is not a greater responsibility to the community. My god…it’s just cereal!
Look…there’s a lot of passion on both sides of the issue. There are many out there like me who just don’t understand why 1) anyone would risk eating them when it’s still debatable if they’re safe; and 2) anyone would publicly promote them.
And there are those who just want their Cheerios dammit and they’re going to tell the world about it.
3 years after my celiac diagnosis, I was still feeling like crap. When I gave up the boxed cereal for breakfast, my healing process began and I have not had a bowl since. And no…I am not food shaming. I get why people eat them. Convenience. Money. The chance to eat something from your past again. I am not passing judgment.
Can we just tone down the rhetoric that “Gluten Free” Cheerios are the greatest thing since sliced bread? Blogging and advocating as a celiac comes with a certain responsibility…not just to yourself, but to the community.
Put the community first and we’ll all benefit.
Yes…it’s really that simple.
P.S. If you want to read some great posts about this subject, check out:
– Erin at Gluten-Free Fun, who had a call with the folks at GM.
– 5 Things to Know About the Gluten Free Cheerios, from Johanna’s Kitchen.
– Pissing In The Gluten-Free Cheerios, from Hunter’s Lyonesse
– Gluten-Free Watchdog, who has written multiple articles about it.
I admit I bought a box of Cheerios about a month ago and I never opened it. Im just too scared to try it and I agree that we should wait until GlutenFreeWatchdog claims its safe.
Even before I had my diagnosis I would avoid cereal. I just would never have a good experience. I have a severe Dairy allergy as well and soy milk is no better.
I guess I am fine without it but I do still crave it from time to time.
I have eaten the Cheerios. Was fine with the first box, got sick off the second. Won’t buy them again.
There isn’t a snowballs chance in….I would buy these for my celiac daughter!!! No way no how! Also…gluten dude.am I the only idiot who didn’t realize “wheat amino acids” are in bath and bodyworks hand sanitizers? You know the little ones that have cute little backpack holders that they gear toward children?! Ugh! Why on earth is wheat needed in a hand sanitizer??
Jan, I had no idea. That is seriously messed up. Thanks for the head’s up!
I honestly think it will die down quickly. Its the latest shiny new thing and once more than a few people get sick, the fervor will die down. The ones who “may” keep it up are the gf dieters, but most of the celiacs and gluten intolerant folks I know can tell those people apart anyway.
You know what I’m excited about? Mission gluten-free soft “flour” tortillas. A good “flour” tortilla substitute is hard to find and way more useful than a box of cold cereal.
Thank you, Connie, for the info about the Mission GF tortillas! They were my favorite brand before diagnosis and I am not a fan of corn tortillas or the substitutes out there. 🙂
Less than a week ago I went thru a colonoscopy and endoscopy on the same day. Two years ago this February I was diagnosed. All summer I’ve felt awful, my GI ordered another endo. What did they find? Continued damage from gluten. After reviewing my home practices, it was determined that I need, as a celiac, to cut out all processed food and dining unless the restaurant was certified gluten free. I’ve been relying on some packaged “gluten free” foods that have continued to damage my body and hurt me – no more. I’m choosing me over any processed food.
Consider the Whole 30. It went a long way toward my healing.
My husband and I started this on Wednesday! (Thanks to your previous blogs on Whole30)
Excellent. Good luck with it.
I’ve had to do the same. Developed multiple food sensitivities, so I only eat organic and what I can make myself. I don’t trust any processed foods or GF labels anymore. And no I’m not trying to spread fear. I just want my fellow celiacs to realize “this ain’t no party.”
You have to be aware of everything you put in and on your body.
I am not celiac, but I have Crohn’s disease and a wheat allergy and I am very careful about everything I eat. This is an excellent post, pointing up GM’s lack of real concern for those of us avoiding wheat or gluten for HEALTH reasons, not glamour reasons. Fie on them!
Fie indeed 🙂
“Gluten Free” Cheerios made me so very sick. No one should be advocating for them. The gluten free community needs to come together and tell these gigantic manufactures that we won’t take their half ass processing method.
^^ THIS
As someone who was diagnosed with celiac 20 years ago, as well as a support group leader and now a dietitian-in-training, I am right there with you, Dude! Well said, thank you.
Oh, my god. You have to be very careful. Being a coeliac is neither an easy thing nor without health consequences.
My husband and I watched one of their GF ads on TV the other night. He was excited for me because he knows I used to eat Cheerios (pre-diagnosis) all the time. I said, “No. It’s nothing to get excited about” and explained your experience at GM and their testing process, etc. He was really bummed for me – and our community. More than that, want to know what really bothered both of us? The tone of the ad. It completely hit on the heartstrings of a loved one having a problem – and conveyed the feeling of relief that Cheerios is okay to eat now. Um…not so much…
Their infomercial about why they don’t use certified oats on YouTube is more PR BS. “Safe for Celiacs”…again…not so much…
I have celiac. I would *never* eat non-GF oats. I am not the most thorough about cross-contamination at restaurants or on production lines, since I only get physically ill if I eat a lot of gluten. That said, General Mills is being too irresponsible even for me.
I gave up boxed cereals a year or so ago and have much healthier, filling breakfasts since. I looked for the GF Cheerios when they first came out but my grocery store didn’t have them yet, then I learned of the controversy. I’m glad I didn’t get any!
What bugs me even more is the people who worry (and post publicly) over any type of cross-contamination at restaurants but are indignant that the Cheerios don’t make them sick so they’re going to continue to buy them. I don’t get it.
Thanks for this. It needs to be repeated in more places. I am so irritated with the food industry. I’d love to let the yahoo at GMills, who thinks the “mean” testing is a good idea, to spend a week living in my body…can’t ever eat out, can’t eat anything processed that’s not GIG certified, can’t take vacations, have to cook everything from scratch when I am exhausted and spend at least two hours a day emptying my insides into the toilet. The food industry solution for celiacs must be to kill us all off so they don’t have to worry about us anymore. As for the celiac defenders of this stupidity, Shame on them. They make the rest of us look like whining babies. It’s no wonder no one takes the celiac community seriously.
To me it is a game of Russian roulette. General Mills is perpetrating a lie on consumers. Each box has the word “gluten free” clearly printed which BY LAW means it is below 20ppm.
Nowhere is there a provision that allows for supplying boxes that are OVER 20ppm to be legally labeled as “gluten free”.
Let’s compare to something that can make others very ill – say rat poison. IN small amounts it just makes people sick. Are manufacturers allowed to “average” the amounts of this danger and claim each individual as safe?
Would the general public accept such risks?
Then why are Celiac’s, NCGS’s and others with gluten issues being expected to accept it?
Research the Lead in paint issue. You will find that well respected members of medical society blamed the children, the parents, and environment, anything other than the lead for many years. Seems pretty close to gluten for Celiac’s today.
Once again, Dude, you are bringing the real truth to our community. As a support group leader, I am passing on your article to my members as I am getting many questions about Cheerios. This will definitely put things into perspective for them as you not only have your facts, but you also write very well! I grew up on this cereal and wouldn’t touch it with a ten-foot pole now, no matter what they say! BS, BS, BS! That’s what it is, and all in the name of a money grab!
Thank$ Jane. I totally agree.
Thanks again for being a voice of reason in the face of so much frustrating BS. Things like this make me so glad I was diagnosed years before the GF fad. It was hard enough to figure out what was safe (mixed in with a lot of denial at first), but if I’d had to wade through marketing garbage like this in the beginning while trying to figure out the diet, I’m not sure I ever would’ve gotten better. This disgusts me.
Personally, after having lived for years with oats being on the forbidden list, I’ve never been willing to introduce them into my diet, no matter how they are labelled. I’ve read enough conflicting things — different strains of oats (even certified “clean”) might provoke a reaction, that even some “clean” oats might not be … I can’t fathom why I’d take that risk for oatmeal or boxed cereal (!) when there are so many other options available.
Good to know. I’m not a celiac, but I have MTHFR and anything with gluten usually comes with folic acid.
People who are diagnosed with celiac, gluten-intolerance, etc see it as a death sentence, thus when they see headlines screaming “gluten free cheerios” their last little glimmer of hope starts sparkling… It’s sad though. Have an intolerances is not a death sentence, it’s actually a shiny door to new life! You can find new and interesting foods/recipes that work for you. It should be exciting trying to figure out how to BETTER yourself.
When processed foods start screaming “gluten free,” when really… There is hardly a way they actually could be… That’s when you know, they’re once again just trying to TRICK US!
And on that note… Oats typically have GLUTEN in them. Gluten-free oats scare me. That’s a HARD NO.
Here in Australia, and New Zealand, People with coeliac disease, do not eat oats, unless we have done an Oat Challenge, with a biopsy at each end. Because a good percentage of us react to oats, they are considered one of the grains to avoid. As a consequence of that , and our “no detected gluten” in gluten free products, we heal a lot quicker than the rest of the world. I don’t understand why you would risk eating oats, with a chance of them being one of the grains that cause damage. Here we use the BROWN to remind us, Barley, Rye, Oats Wheat, Never.
Maybe we should stop referring to this product as “gluten free Cheerios”, but rather “Cheerios that have been labelled gluten free”. It would be more consistent (and descriptive) of what they are and the message you are trying to send Gluten Dude!
Thanks for the update glutendude! I have celiac and have had about 5 boxes of the honey nut cheerios so far however haven’t gotten sick so far will start paying attention more to how i feel after i eat them now .
GD,
I wish an executive at GM could actually feel what it feels like to be `glutened`…..but ya know none of us, in the gluten concerned and educated community, is that silly to work in a company who would `label`in this way.
All in the name of profit…..Cheri-o!
Not passing through these lips!
So despite all the warnings I was an idiot and tried them and reacted in about 20 minutes. It wasn’t as bad as the time a stupid waitress WITH Celiac forgot to put down my sandwich needed to be made with gluten free bread, but still a definite reaction. My question is who do I report it too? This scares me, and is a lot of why I don’t let people cook for me. They act like we are all over reacting. I started telling people it’s as serious as a peanut allergy. For some reason that makes sense to them, but gluten is a bunch of hypochondriacs having a hissy fit. I’ll get off my soap box now. 🙂 For the record Omission beer always seemed suspicious to me too. Glad it isn’t just me!
Angela – you can go to this link and read Tricia’s post about how to report your incident:
https://www.glutenfreewatchdog.org/news/sick-after-eating-gluten-free-cheerios/
Hi All…
I left a message on the first blog I found on cheerios. I bought my first box this week. After 2 bowls I’m in agony. I was diagnosed with Celiac in 2002. I have Systemic Lupus, Rheumatoid Arthritis, Fibro, and a bunch of other fun auto immune diseases. When I became symptomatic (2000) my rheumatologist kept telling me it was the meds I was on.
If not for a friend I had gone to graduate school with who did a small study on removing gluten to see if it helped individuals with SLE, I never would have tried eliminating all gluten. Didn’t help my Lupus but all my GI problems vanished!
I have been 100% gf since 2002. Then Friday I bought cheerios- as I mentioned in my other note when I read the box and it mentioned something about Oats being GF…I knew better. They didn’t say they were using GF Oats (which are the only oats I use- and am ok with them). But I bought the damn box. 2 bowls in and I am SO ANGRY (and in a lot of pain).
Now maybe if you are just Gluten Sensitive you will be ok (should you decide to risk it) but I am miserable and it will take a few days to get this out of my body and I’m angry. My advice- if you have Celiac DO NOT RISK IT- it’s not that one bowl might kill you, it’s that one bowl might make you FEEL like you are dying (IMHO). But everyone is different…but this Shrink with Celiac is passing on the O’s.
GD-
Holy Hell. They’ve screwed us again. The analysis of ppm should be every box. Every single bleeping box. And I want to see data. A nice little lawsuit might be needed to sue their ass. We need a commercial that says, “Have you been a victim of honey nut cheerios?? If you have then call I-800-you suck. Call in the next ten minutes and get a complimentary pair of depends, cause you’ll need them.”
Grrrrrrrrrrrr.
Jersey Girl
I’m very interested to see which way sales go for Cheerios. We Celiacs don’t the Cheerios because they’re not gluten free enough. But I see on Twitter that the gluten eaters are complaining because they are (labelled) gluten free. (And all things gluten free are disgusting, right?!) So has Cheerios inadvertently ended up alienating both sides of their customer base? Time will tell….
I’ve had a genetic test, two endoscopies, and a colonoscopy to confirm the celiac diagnosis. GF Honey Nut Cheerios are not causing any symptoms, just as GF Chex hasn’t caused symptoms. Everyone has a different reactions to GF products. I can’t consume coconut flour, flax seeds, any GF flour blend containing corn flour, etc. It’s an individual thing, but if any company has the resources to make sure that Cheerios are truly GF, it’s surely General Mills and not some little-known producer like Holy Crap or Envirokidz.
I just use Nature’s Path cheerios to give to my dog. They are gluten free and she loves them.
Before we got them, my mom wanted me to actually touch regular wheat cheerios to give them to my dog, and when I complained, she said I was being paranoid and could wash my hands afterwards. My mom always thinks I’m being paranoid about gluten. I refused, and gave her gluten free cereal. When I found Nature’s Path cheerios, the whole family (finally) gave her them.
You write, “So theoretically, ten boxes could be at 15ppm and one box could be at 80ppm, but when you mix them together, it will test under 20ppm.” This is not correct.
10 x 15 = 150
1 x 80 = 80
150 + 80 = 230
230 / 11 = 20.9
What this comes down to is that because of our flimsy labeling requirement in US….any processed product bearing a GF label means sh!t. As an educated person…this leads me to complete distrust of anything that was intended to make me safe. I think my daughter pushing this vegan cred is gaining more momentum…