The debate regarding “Gluten-Free” Cheerios continues and along with it, my emotions over the matter are escalating. So I find myself addressing the topic again. I have already talked about the concerns regarding production and testing in Gluten-Free Cheerios: Safe or Not? and Part 2 follow-up to that post.
Today I want to talk about the reports of large numbers of people reacting, what to do if you have had a reaction, remind you of and show you the risk involved in eating Cheerios, and tell you why we should all be watchdogs.
Lots of People are Reacting
There have been many comments on social media, on blog posts, and as part of the Change.org petition regarding people getting sick from eating the new Cheerios. And we can be sure there are many more people who have not said anything online. These reports should be a concern to everyone involved.
Some people are responding to those reports with excuses such as the reactions being caused by oats (not gluten), too much fiber, or accidentally picking up a box of Cheerios that is not labeled as gluten free. While it’s possible that those reasons are true in a few cases, it does not make sense that it is true for the majority of instances. There are just too many reports for those reasons to be the only cause.
I know that the value of reported reactions is somewhat limited, but I don’t think that reactions mean nothing. And it’s very frustrating when people (especially people who themselves do not have obvious reactions to gluten or aren’t themselves gluten free) dismiss individual reactions. Many times when I have a gluten reaction, I get symptoms that I only get when I have ingested gluten – not when I have a stomach virus or any other digestive upset. I get a very specific pain in my gut. Yes, other things can cause pain, but not THIS pain. I also get very sleepy, very suddenly. It’s not like tiredness that comes with the flu. It’s one minute I’m fine and the next I have to go to sleep. In the past, I have also had mental reactions, which cannot be explained by the usual excuses.
I honestly believe that people are reacting to gluten in these Cheerios, and I’m not surprised based on what I’ve learned and shared previously (see links at the top and bottom of this post).
Report Your Reactions
If you or your child has reacted to “Gluten-Free” Cheerios (and double checked to make sure the box does say “gluten-free”), then PLEASE report your reaction to the FDA. They are aware of the issue and they are asking that you use their MedWatch Online Voluntary Reporting Form. (You start by clicking a button on the right side of the screen under “Begin report as a:” with the button choices of “Health Professional” or “Consumer/Patient.” Most of you would choose “Consumer/Patient” and that will take you to the form you fill out. You can also contact the FDA via phone (800) 332-1088 (press 4 to speak to a representative).
“I Haven’t Reacted”
For those of you who have eaten “Gluten-Free” Cheerios with no problem (even if you are very sensitive), this should still be a concern to you. You have been lucky enough to purchase safe boxes of cereal, but you’re taking a risk with your health, or worse, the health of your child. (Keep reading.)
The Problems
Since I know that some of you have not read and will not go back and read my previous posts, I’m going to briefly address a couple of the problems here. Tricia Thompson of Gluten Free Watchdog has been in contact with General Mills and has provided us with valuable information.
One problem is that gluten-free oats are not used for the majority of the Cheerios being produced. Instead, a mechanical process is used to separate gluten-containing grains from the oats. Testing has proven that this process is not foolproof.
Another problem is the testing that General Mills does on the Cheerios. According to Tricia,
“General Mills pulls 12 to 18 boxes during a 24 hour production cycle, grinds the contents of each box, takes a sample from the contents of each box, mixes all the samples together and regrinds, tests 12 sub-samples, and averages the results to provide a lot mean.”
The problem is that this averaging dilutes some high values. In other words, some box samples are over 20 ppm but because mixing and averaging provides a lot mean below 20 ppm, all the boxes are considered safe. Below is a graphic to help you see the problem. These are not actual test results, but they are possible values that could result in a lot mean of 15 ppm.
It’s probably not likely that the 12 sub-samples used to come up with the lot mean have this much variation because those samples come from a mixture of the box samples. But we do know that some of the lot extractions have tested above 20 ppm (sometimes well above), and so this kind of variation could be seen among samples from different boxes of Cheerios.
This is simply meant to be a visual to help you understand why some people are getting sick and others are not, and why there is a big risk involved in eating Cheerios.
We Should All Be Watchdogs
I love Tricia Thompson’s blog name, “Gluten Free Watchdog.” She’s a faithful friend who looks out for our safety and well-being. We all need to be that for each other. Look at the graphic above. Does that look safe to you? If it was unsafe levels of arsenic or cyanide, would you take the risk? No!
Gluten might not kill people as quickly, but I for one was slowly becoming malnourished from the damage gluten was causing to my small intestine before I was diagnosed with celiac disease. The symptoms and effects of gluten are many, and they certainly degrade people’s quality of life and health. That’s why we’re gluten free, right? So why take the risk?
I don’t eat cereal. At all. Yet this issue troubles me. I am concerned for all of my gluten-free family, friends, and readers, as well as all gluten-free eaters out there. And I’m letting you know about it because I think that to some degree, we should all be watchdogs.
I believe that facts and reason indicate there is significant risk involved. I’m asking you to look at the risk – the danger – to you and others and be a watchdog. Make some noise, even if it’s just telling a friend. And hopefully, General Mills will hear our barking and take action to make Gluten-Free Cheerios safe for everyone.
Hi Linda. I am with you on this, I do believe people are reacting to gluten and not the fiber in the oats. I am not sure if you saw this, but I spoke to General Mills PR team last week. Here is what they had to say:
http://glutenfreefun.blogspot.com/2015/09/cheerios-update-phone-call-with-general.html
Thanks, Erin. I did read your post last week but forgot to add it to my list here. I’ll do that now.
I am with Linda on this one. I will not take a chance and eat cheerios even if I ate cereal. If had a celiac child, I would not let them eat them either. Celiac is serious – why take chances when we are blessed here in the USA with many options for meals.
Thanks so much for this post, Linda. Your words are definitely words of wisdom and your graphic demonstrates the issue well. Sadly, I don’t think many folks are reading or doing their research; they are simply trusting General Mills and judging gluten content based on their lack of reactions. Eventually some get a gluten-full box and do react, but others keep saying, I’m eating or my child is eating them and s/he’s super sensitive and she’s not having any issues. 🙁 Thankfully, some individuals have read posts like yours and some of our social media posts and finally realize they have been having reactions to Cheerios. When one is told a product is gluten free and the one starts having issues, the product is not the first suspected gluten source. The individual looks at everything other than that. This is such a serious issue for our whole community and, as you say, we all need to be watchdogs. Doing anything less is unacceptable.
I am grateful that because of the reports to the FDA thus far (which is only a small percentage of the total that we’ve seen shared online), the FDA will conduct a review of the Cheerios for gluten-free compliance. That’s progress, but we need everyone who has gotten ill to contact the FDA and we need everyone in the gf community–and those who care about them–to sign the petition.
Shirley