Are Gluten-Free Cheerios Really Unsafe for Celiacs?

Less than 20 ppm is NOT gluten-free. I affirmed this years ago, by binging on allegedly "gluten-free" [not!] Chex when they first came out a few years ago, which incited a severe skin reaction. [i have DH, and consider myself a canary in the coal mine of gluten contamination.] I called in the FDA to test , but with their limited resources they were unfortunately unable to detect traces of gluten below 20 ppm. But, the evidence was clear: empirically, Chex was not "safe" for me. The symptoms were unmistakable, and directly related to the ingestion of Chex. I have never purchased another box, and refuse to trust General Mills "gluten-free" product line. Once bitten, twice shy. Caveat Emptor!

Sorry, but the FDA makes the rules in America and the standard has been established via numerous scientific studies, and extensive consultation and commentary by leading scientists, doctors and even people with celiac disease. There is no good study data to support reaction levels below 20ppm gluten. You said yourself that you "binged" on a processed cereal product. Perhaps your problem has more to do with binging?

The issue with Cheerios is the mechanical sorting of the oats. That process still has some gluten remaining... it's not a uniform process so some boxes could have more gluten than other boxes. It's not just General Mills using mechanical sorting of oats... many companies use mechanical sorting- that is what should concern people with celiac. No one has to label if their oats were mechanically sorted either. It's important for people with celiac to consume oats from a dedicated oat field.

General Mills employs a proprietary optical sorting system for which they are applying for a patent. For them to get a patent, the process will have to work. I'm guessing they put a bunch of money, study, time and effort to arrive at their final process. They have much to lose if they get it wrong, like being sued by merciless trial lawyers representing angry celiac disease patients. Stay tuned.

Wow, I am just wondering if you managed to talk with Samantha Maloney to verify your own accusations against her. You seem to be accusing her of the same thing that you're doing. And if she is wrong then I would think General Mills are the people who should be coming out with a statement such as this, if in fact she's totally wrong. Knowing that they recalled so much of their own product leads anyone to think that they must take extra precaution if you want to eat their cereal. As we all know, nothing is infallible. Being an extremely sensitive celiac there is no way I'd eat anything from a company that also has wheat in their manufacturing facilities. I've been the recipient of cross-contamination far too often. I say good on Samantha Maloney for warning people of the possibilities. You have to remember, many people are new to this diagnosis and have no idea what is good for them and what isn't.

CCA didn't "warn people of possibilities," they said the product was unsafe for celiacs and that General Mills had "problems" with their sorting process. Those are strong claims that require good supporting evidence. We have suggested that people proceed with caution, use individual judgement, and report any problems. So far, I'm unaware of any problems, or reports of problems with any actual supporting evidence. If you know something we don't, then please share. Otherwise, it's one thing to suggest caution, entirely another to say that a product is unsafe.

If one credible highly gluten sensitive person gets sick in a way that they only get sick from gluten, and then they stop eating the product and they get better, that proves that the product is not really gluten free, and it should not be consumed by highly gluten sensitive people. It is not enough proof to make an accusation against the company. So, warning people is good. Believing that there is no doubt that the product is not gluten free is also good. But, accusing the company is premature. Not because there is not enough proof, but because the proof is not the type that the public will accept as proof. Eating the product and keeping the box for testing is not being cautious, because keeping the box does not stop you from getting sick.

Agreed. People who think they are getting sick from this, or any, gluten-free product should 1) stop eating it, and 2) report it to the FDA, the company, or other appropriate authority. If enough people actually complain with box information, etc., then there might be evidence to support a claim that the product is not safe for celiacs.

Why would you say that it is irresponsible for someone to think General Mills is using a faulty system? What IS irresponsible is taking gluten-filled oats, trying to remove the gluten, then not providing sufficient testing on their products. Cheerios are a "gluten removed" food. What is also irresponsible is how General Mills handled the recall - ignoring comments from sick Celiacs and claiming that they were sick because of the high fiber content. They also refuse to answer questions outside of their general statement about the recall. Nothing that General Mills is doing is responsible. You said in a comment above that this article is in response to what Samantha said on CBS - have you ever been on the news? They largely control and edit what you say for time constraints. There is always more to the story than what is briefly said in a news program.

"Gluten filled oats?" I'm not sure what you mean. Pure oats are gluten-free, although some celiacs are also sensitive to oats, and oats sorted to 20ppm or less are also gluten-free, and meet the FDA standard for gluten-free products. Also, if General Mills is knowingly turning out gluten-contaminated products, don't you think their likely to be sued by hungry trial lawyers?

Mr. Adams, I take issue with your mocking tone and disregard for the possibility of gluten contamination. Let's remember when the incident happened of a train car load of gluten grain was introduced into their flour, that it wasn't until celiac patients started complaining of reactions that GM never bothered to TEST the bad batch. That tells me that they lack a good process to keep me safe. I have a neurological condition caused by celiac disease. If I get any gluten I am bed bound (Ataxia, neuropathy, brain deterioration, etc) for at least six weeks and I never recover fully to where I was previously to this episode. I don't get any gut symptoms. Mine are all neurological in nature. It's called Gluten Ataxia. It seems you've even written an article about this manifestation of celiac disease. Until GM and other new to the game corporations are willing to submit to outside testing on a regular basis and not just trust their sorting system, I would be a fool to trust GM.

Gluten ataxia, or no, calling a product "unsafe" for celiacs without actual evidence is wrong, especially for an organization with a mission to promote awareness. It's one thing to say that people should use caution, as GM's sorting method is new, and that people should use their best judgement, regardless of gluten-free labels. However, many people, including many sensitive people report eating Gluten Free Cheerios and other gluten-free GM products with no adverse effects whatever. Until there is actual evidence to support a challenge to GM's products, it is irresponsible and unscientific to call them unsafe.

Not all with celiac are the same, that's why diagnosing it is so difficult. You can have 10 people with celiac eat the exact same meal and all ten have may have different reactions. But we do know is this, NO AMOUNT of gluten is safe for someone with celiac and damage can actually be occurring without you or I even knowing it. Everyone with celiac should be supportive of each other, that's what will make a successful support group and make for strong public advocacy.

"But we do know is this, NO AMOUNT of gluten is safe for someone with celiac..." The vast majority of people with celiac disease have ZERO problems with gluten content below 20ppm. That is supported by peer-reviewed science, which is one of the main reasons the FDA arrived at the standard.

I wasn't sure if I should put a poor or excellent rating, because I'm glad the info is being put out there, but to cast doubt on the veracity of the claims is a bit troubling. I bought a box of regular flavor gluten free Cheerios (I have celiac), and had 1 bowl, and was sick for days! I gave the box to my co-worker, who is gluten sensitive and she also got sick! She fed the rest of the box to the birds in her garden, so I don't have a sample to send in. But I was pretty miffed because I'm SO careful.

Did you report it to the FDA? Or even General Mills? You just need to report the lot number. They don't need the Cheerios, just the lot number. They can find product problems with very simple information. Please do report such problems in the future. It's the only way to discover issues.

Although it is a timely topic, the more important point is developing celiac in the first place. I have the genetics for celiac but did not develop it until my late 50's. I ate many wheat products with no problem, but when I ate Cheerios (regular) and Ritz, I developed a particular GI reaction. I subsequently developed the same reaction to all gluten products. As a result of Cheerios and Ritz, my immune system now reacts to all of them. It is interesting that Meg (prior post) eats Cheerios regularly and that her daughter developed celiac. Her daughter probably ate Cheerio's often, following Mom, and got the disease early. I bet a lot of people with celiac were Cheerios and Nabisco fans. Maybe it's some additive, might have something to do with why they are having problems with their gluten-free variety.

This is not exactly correct. Celiac disease was discovered and named in the 1950s, the condition and the genetics have existed for a very long time.

What's irresponsible is the "innocent until proven guilty" perspective taken in this article. It does a great disservice to celiacs who need to know beyond a shadow of a doubt that a product is completely safe for them before using it. The use it, see if you react, and then we'll discuss it approach is just as bad as: if it were really dangerous, people would be reporting it. It doesn't work that way. Hubby reacted to these gluten-free Cheerios, and the box was NOT from the re-called batch. He didn't see the point in reporting it, so your logic doesn't hold up. Me? I chose not to go anywhere near the stuff because of the way they test. I'm a super-sensitive celiac who reacts to levels far lower than 20 ppm. I already have several autoimmune diseases, so to me, it's simply not worth the risk of getting more.

Once again, some people claim to have adverse gluten reactions to these cereals. Other people with celiac disease claim they, and/or their celiac children consume these products with no issue. Without actual evidence, which side do we promote? Answer is neither side. Would you be happy if we said: Lots of people with celiac disease have no trouble with this product, therefor, it must be safe. No, you would no be okay with that. Your position is no different. We must have actual scientific evidence to support either claim. Until then, we simply advocate caution and individual evaluation of these products. We also advocate reporting any suspected gluten contamination. That´s the responsible position.

This article feels written with bias. When you write about her "stories" that she's "hearing" and use quotation marks like this, your bias clearly shows. It certainly doesn't feel like both sides of the argument were thoroughly researched. I personally feel like it's the gluten free testing that is flawed when it comes to Cheerios. We will stay away from them until they adopt a safer testing procedure.

Those words appear in quotes, because those are the words that were used. It's one thing to urge caution until the dust settles. It is entirely another thing to state that the GM sorting process has "problems" and that their product is unsafe for celiacs. That has not been proven, and no actual evidence is offered. By all means, use caution and trust your own reactions. Just don't claim something is unsafe when no evidence exists for the claim.

I was so excited to eat Cherrios again. I bought a box and ate a bowl. Was sick for 2 days. Didn't save the box or call the company. After 25 years of gluten free eating, I have learned to not experiment with my body. If I get sick once - that's it. So nothing from General Mills. I do not believe that they will ever take the proper care to ensure that their products are truly gluten free, because that is not their primary interest as a company. Better to buy from companies who have gluten free food as their primary food.