Thursday , 15 November 2018
Home » Stop Diseases » Should Celiac ‘Leaders’ be Promoting Gluten-Free(ish) Cheerios?

Two things you need to know up front: 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.) The Celiac Disease Foundation is probably going to hate me (if they don’t already). If you […]

The post Should Celiac ‘Leaders’ be Promoting Gluten-Free(ish) Cheerios? appeared first on Gluten Dude.

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

gluten free cheerios unsafe

Which 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 Zues’ 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

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

cdf sponsors GM

A few point of interest here:

  • 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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