The State of Gluten-Free Advocacy

Annie's 6

February 1st marks my sixth blogoversary for Hunter’s Lyonesse. Much has changed in the gluten-free community through the years, but it’s not all good. We are in a crisis right now and most won’t admit to it. Microcomplaints get more attention than our fellow Celiac/NCGS people who are sick because of companies dealing in shady practices to fit within FDA regulations. Advocacy is by the wayside. People would rather jump on a brand loyalty bandwagon than stand up for our fellow gf community members sick from “gluten-free” products when science shows the products aren’t safe. Vilification of victims and profit is now more important – and more comfortable – than everyone’s health.

No one knows what advocacy is anymore. Not all bloggers are advocates. Bloggers doing only sponsored posts and monetizing their blogs, push product and call it advocacy. That’s not advocacy, that’s an oxymoron.

You get a lesson on advocacy. And you get a lesson on advocacy. EVERYONE GETS A LESSON ON ADVOCACY!

Advocacy is the public support for or recommendations of a particular cause or policy. In my twelve and a half years working in mental health, it also meant speaking for those who didn’t have a voice, ensuring clients had needed services, and that service providers were providing services.

As a blogger, my readers became my clients. When I spoke up on an issue, it was on their behalf – either to educate them or to effect change for the community. Service providers became the organizations and food companies. Even though I fight for my readers, I also fight for those without access to all this information so they don’t get sick. Those with less resources than we do have less recourse and that’s not fair to them. None of us asked for this chronic disease or way of life.

Maybe it’s the natural advocate in me that was honed through my career, but I refuse to be a bystander when people are being misled outright lied to all for the fattening of wallets that are not our own.

Several weeks ago, I asked Beyond Celiac (formerly NFCA) a pointed question about the GFCP (Gluten-Free Certification Program, endorsed by BC) allowing self-declaring of gf ingredients in response to an issue with ALDI’s gf chocolate chip granola bars – gf malt extract is listed in the ingredients that is actually derived from barley.

BC question

What I got – along with a handful of others asking the same question – was canned answers and links to Beyond Celiac’s Q&A page. The answers we sought were not on that page.

This happened two days after Gluten Free Watchdog put the word out about the granola bars and a full day after Tricia updated readers that the malt extract was sourced from barley. So not only are they not giving straight answers, they aren’t informing their followers of serious issues in a timely manner. It’s like getting a tornado warning after the fact.

Unacceptable. We have a reasonable expectation to receive straight answers. I see through the rhetoric and it’s frustrating to watch everyone accept it without question. We deserve better. This is our health at stake.

Self-declaring certification is like when Post announced their Pebbles cereal was certified gluten-free. Who certified it? Themselves. Certification means nothing without third-party verification. Next time you pick up a box with the GFCP logo, think twice because anything derived from wheat, barley, or rye is allowed to be an ingredient under that “certification.” Yet, it happened because there are not enough third-party checks and balances.

Thanks to the advocacy of individuals in the community, the granola bars were pulled from the shelves. However, when it comes to Cheerios and Lucky Charms, heads hide in the sand and the erroneous belief is spread that the recall in October took care of the “problem.” Only a handful of us wants to advocate for General Mills to source purity protocol oats and change their mean testing method to individual samples so the continued glutenings stop. Tests of Cheerios not involved in the recall showed a wide variance in the ppm, along with results over 20ppm. This shouldn’t be happening, but everyone’s silence and denial allows it to continue.

When BC was still the NFCA, they gave Domino’s an amber designation for their gf pizza, but told those with Celiac that it wasn’t safe – no dedicated area or toppings for making the gf pizza. Many bloggers saw how dangerous and confusing this was and we voiced our displeasure on our blogs and social media, effecting change for the good of our gluten-free community.

In the case of “gf” Cheerios, the big picture was laid out before me and my friends when GFWD reported the facts – if GM got away with mean testing and not using purity protocol oats, other companies would follow suit. Through all the advocating, Tricia went digging and compiled a list of suppliers and manufacturers of purity protocol oats. To our surprise, other companies were already doing what GM is doing. I urge you to go to the list (link at the end of the post) and bookmark it to reference when you’re looking for gf oats.

Where is BC when those in our community report getting sick from “gluten-free” Cheerios, and now “gluten-free” Lucky Charms? What were they doing between GFWD announcing the gf malt extract ingredient and when they did? Why is GFWD doing all the reporting to the FDA on these illnesses and issues and not them? Or Celiac Disease Foundation for that matter? Or Celiac Support Association?

Why aren’t these advocacy organizations stepping in to advocate for us and saying, Enough? Why aren’t they spreading the word to food banks so those in the community without access to the internet can be informed if they go in and want a box of the newest gf product that really isn’t safe? Why aren’t they advocating with the FDA for labeling regulations that benefit us, not the manufacturers?

Why aren’t bloggers standing up to say, “This is wrong. We want better from you or you don’t get our dollars.”? Why are they so quick to run off to a company for biased information about a new product and then present it to us like it’s the best thing ever without even giving readers the whole picture? Why aren’t they telling readers to whom and how to report their reactions to processed foods labeled gf? Why are we accepting this from them? Why do we keep reading blogs who only do sponsored posts, receiving some form compensation from companies? How is this really helping us as individuals? Where is the education? Where is the advocacy?

Cheerios 3

Does the Celiac Disease Foundation really have our best interests at heart now that they are being sponsored by Cheerios?

The CDF’s logo is on all the gf Cheerios boxes. That tells me that they’re more interested in money than fulfilling their mission statement. They can’t improve our quality of life while accepting money from a company that has made/continues to make our community sick. That’s not advocacy.

Six years ago, my fellow bloggers and wanted to create great recipes with silly/interesting/poignant stories to tell with them. We wanted to be a wealth of information for our readers, especially those new to the diagnosis. We did what we did for the readers. When problems like Domino’s came up, we rose together to tell everyone, “We aren’t going to take it.”

You can’t serve two masters. Bloggers, organizations, and magazines need to refuse money from the companies making our community sick. Taking money and calling themselves advocates is contradictory at best. They need to take a stand when we are wronged. They need to speak out more on our behalf, acting in our best interest. We are in this community together because of health needs, not for arts and crafts or feel-good-hippie-vibes. Our health is the priority. Bottom line. Period.

They need to point their readers in the right direction when they report getting sick instead of, “Maybe the next box.” Fuck that. If something makes me sick, I don’t go near it again – even before going gf. I haven’t bought anything from Food For Life since their brown rice tortillas made me six five and a half years ago. That rotisserie chicken that my mother loves so much I refused to ever eat again after getting violently ill in high school. Brain fog might have messed with my memories the last seven years, but things like that stick with you.

Cheerios heat sink map 92915

Heat sink map of 169 illness reports from “gluten-free” Cheerios on the Change.org petition as of 9/29/15. Note how the majority of reports are on the opposite side of the country as the Lodi plant and that this was BEFORE the recall. Map by In Johnna’s Kitchen, used with permission.

Sharing recipes and information for readers shifted into worshipping and selling gf processed foods to the detriment of our community. Instead of taking advantage of this new life without gluten and opening the doors to the wide variety of fresh foods available to us, some refuse to the cut the emotional ties to the processed foods of our former gluten-full life. Marketing specifically tugs on our heartstrings so we’ll open our wallets and scream, “TAKE MY MONEY!” That’s what marketing is supposed to do – and we buy it, every single one of us. When you do that and then rigorously defend your choices about buying a product that makes many others sick, you put everyone at risk. I recently saw someone comment that every kid needs Honey-Nut Cheerios. No. No, they don’t. Every kid needs a safe place to grow. Every kid needs good parenting to feel secure. Every kid needs to blow bubbles, laugh at silly jokes, and make mud pies. Every kid needs to know they are loved and that their loved ones believe in them.

We, as individuals, need to be more discerning about where we donate our money, which magazines we subscribe to, which blogs we follow, and what’s really in our food – don’t stop reading labels. We need to use our critical thinking skills. We need to watch the advocates as they report news, help them spread the word, and take note of those who come late to the party.

Anyone using the disclaimer that a product may or may not be safe for Celiacs/NCGS or that you should use your own judgement is doing two things: 1) selling you something, and 2) covering their ass because that product is definitely not safe for anyone who needs to be gf. Remember first and foremost, gluten is gluten and will do what it does to all of us who can’t have it whether we feel it or not. It takes up to 72 hours for symptoms to manifest – if they do. Eat enough of the food making everyone else sick and you’ll have an accumulative effect while wondering what is making you so sick.

Would you allow a doctor push medication on you that you know you don’t need? Would you pick the croutons off a salad and still eat the salad? If not, why would you buy any product that amounts to the same thing, or give your time/money to any blogger, organization, or magazine promoting said product? Why would you find any of that acceptable to continue to do so?

It’s our health.

Right now, Cheerios, Lucky Charms, Quaker, and ALDI aren’t the only issues facing us. Multiple gf products are on the market with malt extract listed. Schar is using “gluten-free” wheat starch in some of their products and opening the door for other manufacturers to do the same. There are gluten-removed beers on shelves mixed in with the gf beers and listed as gf beer on menus – again, removing croutons from the salad. There are no effective tests to show how much barley is left in these beers. If you never noticed before, these beers are not labeled gf – they can’t be per the Trade & Tax Bureau. No alcohol made from a gluten-full grain can be marketed as gf.

I want to challenge you to put advocacy to action.

  • The FDA is taking comments on a proposed regulation on the gluten-free labeling of fermented and distilled products. You can go to In Johnna’s Kitchen’s recent Call To Action post for a sample script you can use for your comment.
  • Stop buying the products that you see making others sick. Offer these people your support and empathy, and educate others on why the product is not safe.
  • Question bloggers, magazines, and organizations you see not taking reports of illness seriously or simply pushing product instead of advocating for our safety. Call them out on their motivations being money before people.
  • Buy only purity protocol oats. You can reference the list Tricia compiled of suppliers and manufacturers.
  • If you get sick from a gf labeled product report it to the FDA Medwatch online or call (800) 332-1088. Choose option #4 to speak with a representative. You will be asked for information from the box, so save the box/package. If you see someone report they were glutented, please pass this information on to them.
  • Sign the Change.org petition to effect change with the sourcing and testing of oats for “gf” Cheerios.

I stopped buying all General Mills products until they can do gluten-free the right way. I did not buy much from their brands, but Muir Glen, Cascadian Farms, and Haagen-Dazs were go-tos for me. Not anymore. GM brands are as follows: Annie’s, Betty Crocker, Big G Cereals, Bisquick, Bugles, Cascadian Farms, Chex, Diablitos Underwood, EPIC (recently bought out by GM), Fiber One, Food Should Taste Good, Frescarini, Fruit By The Foot, Gardetto’s, Gold Medal, Green Giant, Häagen-Dazs, Hamburger Helper, Immaculate Baking, Jus-Rol, Knack & Back, La Salteña, Lärabar, Latina Fresh, Liberté, Mountain High, Muir Glen, Nature Valley, Old El Paso, Parampara, Pillsbury, Progresso, Totino’s/Jeno’s, V. Pearl, Wanchai Ferry, Yoplait, Yoki.

 

The Gluten-Free Cheerios Deception

Sign the petition here to help us ensure that gluten-free labeled Cheerios really means gluten-free for all.

If Cheerios made you sick, please go here and follow the information given by Tricia Thompson to report to the FDA.

Does the Celiac Disease Foundation really have our best interests at heart now that they are being sponsored by Cheerios?

Does the Celiac Disease Foundation really have our best interests at heart now that they are being sponsored by Cheerios?

You are being deceived.

All the bloggers sharing the news about General Mills’ gluten-free Cheerios are feeding you what you want. You see the headlines about the new Cheerios and gloss over their statements of, “This is what Gluten-Free Watchdog has to say. You’ll have to decide for yourself.”

Yes, we all have to decide for ourselves, but that little statement they make in the midst of their shiny happy posts gets lost on so many people. If you catch it, you might think, “Oh, yeah, cool. I have the power” and you most certainly do. What it’s really there for is to serve as a CYA clause. Haven’t heard of a CYA clause? That’s the fancy legal jargon for cover your ass. I’m not kidding. It’s there so you can’t eat the Cheerios, get sick, and go back to them accusing them of steering you wrong. They can point to it and say, “Caveat emptor.” They get to wipe their hands of the mess.

Those who are sharing the posts from The Gluten-Free Watchdog, either haven’t read Tricia’s posts or read them and choose to ignore the facts. Because how can you have that information, disseminate it to others and then comment, “I wonder why that is” when someone leaves a comment on their post or page, reporting they got sick. If they have to ask that, something is very wrong. To have Tricia’s information and not know the answer is incomprehensible to me. There is no mea culpa with them.

Erin Smith of Gluten-Free Fun recently shared her phone call with General Mills marketing representatives in this post. The insistence that the product is gluten-free when the sourced oats are not grown under a purity protocol is ridiculous. All of us blogging and advocating for the gluten-free community should know that this is an immediate red flag. Oats are naturally gluten-free, but they come into contact with wheat, barley, and rye in the growth, harvesting, and transportation and they can NEVER be truly gluten-free because of this. The marketing of this cereal to the gluten-free community as being safe, the lack of transparency, and the excuses for why people are getting sick (rather than accepting responsibility) violates the American Marketing Association’s Statement of Ethics.

Every box of Cheerios you open and pour into your bowl is a gamble with your health. There’s no way to ensure that all the gluten is removed in this process. How is this better than sourcing oats that are grown under purity protocol? One is gluten-light while the other is gluten-free. Someone used “mitigate” to explain (and defend) what General Mills is doing with gluten-free Cheerios. That word right there should tell you everything you need to know. To mitigate means to make something less severe, serious, or painful or to lessen the gravity of an offense or mistake. Everything done in the production of this cereal is a mitigation, not a true production of a gluten-free product. There is no way to mitigate the effects the cereal has had on our community though. The damage is done.

Would you gamble with your life and drink one or all of these knowing there is a high risk that one or more contains poison, but you wouldn't be able to tell until after the fact?

Would you gamble with your life and drink one or all of these knowing there is a high risk that one or more contains poison, but you wouldn’t be able to tell until after the fact? Would you allow your child to?

Do you still want to eat these Cheerios? Yes? Let me ask you this, would you accept a salad at a restaurant that forgot to leave out the croutons and you can see from the visible crumbs that they picked them off? Would you take chips from a bowl after people eating sandwiches/pizza/etc. just stuck their hands into? Would you drink Omission beer? Would you drink from one or more of those shot glasses in the photo, blindfolded, knowing only that each one contains a colorless, odorless liquid? Maybe they’re all water. Maybe some are water and some are poison. Maybe only one is poison. Maybe they’re all poison. Would you take that risk? Would you allow a loved one to chance it? I don’t know about you, but I’m not Westley and I’m not immune to Iocane or gluten.

There is an unprecedented amount of people in our community getting sick from gluten-free labeled Cheerios. Instead of compassion for these people who mostly likely didn’t know how the cereal was being processed or tested, I’m seeing gaslighting and condescension. “I didn’t get sick so it’s not a problem.” “Some people with Celiac can’t tolerate gluten-free oats.” “You should only eat organic, unprocessed foods.” These are the same people who won’t support the Change.org petition even though this is a community-wide issue and could affect how Big Food does gluten-free processed foods in the future if General Mills is allowed to get away with this. I’m reading comments from people who reported to General Mills that they got sick and got responses that every box is below 20ppm or “that’s unusual.” Gaslighting when they could be giving callers a simple apology and assurance that they are working on it.

Food giants like General Mills only have one thing they care about. They want profits. They only did this mass change of Cheerios because they thought it could increase their declining sales. If you think they care about you, ask yourself why they didn’t pull this from the shelves voluntarily when they started getting call after call from consumers who had gotten sick. Or go back further in the timeline and ask yourself why they didn’t do this right from the get go.

“People are actually walking away from cereal because they are avoiding gluten,” says Mr. Murphy. At a time when cereal sales, including Cheerios, are weak, “we can’t afford that.”

Cheerios Will Now Really Be ‘Gluten-Free’, The Wall Street Journal website. Posted February 11, 2015

If you’re reading blog posts and comments on said posts and on social media, the same people saying Cheerios are safe and cheerleading for them are using the same excuses for people getting sick as General Mills gave Erin on the call. As bloggers, we all have a responsibility to our audience and not turn a blind eye to this situation and any others like it.

Advocating for celiac disease and the gluten-free community is #1 priority for those of us promoting ourselves as “authorities” and “experts” in this field. We cannot ignore the number of individuals becoming ill from this product and we must pull together, tell the truth and demand change from General Mills.

Gigi Stewart, petition comment used with permission

We’re supposed to be looking out for each other and we’re not. Gluten-free magazines are taking ad money from Cheerios when their product is clearly not produced in a manner that is safe for us. They are sponsoring the Celiac Disease Foundation, a resource I’m sure many of us turned to in our early days of going gluten-free.  I will not be renewing my subscriptions for any gluten-free magazine, using or referring other people to resource, or attending any gluten-free conferences that are taking money from General Mills. In my opinion, they have compromised their integrity much like the NFCA did with Domino’s.

Someone commented that I shouldn’t have started the petition because I didn’t try the Cheerios. Why would I try them when I had enough information to know they aren’t safe? Why do I need to try them to see our entire community is at risk here? When I was still in the mental health field advocating for the well-being of my clients, I didn’t need to be abused by their abusers to do so. I don’t have to experience something to know that wrong is being done.

I have nothing to lose by advocating for our community. Nothing. I should be working on my next novel and instead I’m fighting an uphill battle with like-minded bloggers because everything about this situation is shady. There are people in our community who don’t have our resources, who don’t have access to the internet and this information. They are buying the cereal, trusting in the gluten-free label. I cannot, in good conscience, let it keep happening.

Our community needs products they can trust. Celiac/gluten-sensitivity doesn’t care about socioeconomic status. Not everyone who needs to be gluten-free can afford to eat organic, unprocessed foods. There is a need for cheaper more accessible processed gluten-free foods for those who are on public assistance. Some kids may be on the spectrum and for them, their cereal is a sensory issue and they know when their parents try to switch brands on them. This isn’t about one diet being the right diet. We all eat gluten-free and do so differently, but it has to be safe. We rely on the new labeling regulations to keep us safe and trust manufacturers to do right. This is not happening here and it’s why General Mills needs to change the way they do gluten-free Cheerios.

We need to stop gambling for the sake of our community. Hundreds are/were glutened and the reports that seemed endless on social media are what prompted me to start the petition because we deserve better. We deserve to know that if we pick up something labeled gluten-free, that the company is processing and testing it properly to ensure our safety. We deserve to buy something for a loved one, knowing the look of glee on their face won’t change to one of pain.

We deserve better than the rhetorical, deceptive bullshit being served to us.

 

Gluten Free Watchdog Cheerios News:

Manufacturer Use of Regular Oats in Gluten-Free Foods

General Mills “Gluten-Free” Cheerios

More thoughts on gluten-free Cheerios

Gluten-Free Cheerios: Take Two

Gluten-Free Cheerios: Take Three

Updated Position on Gluten-Free Cheerios

Sick After Eating Gluten-Free Cheerios?

 

My previous posts:

Pissing In The Gluten-Free Cheerios

Effecting Change

 

Gluten-Free Homemaker

Gluten-Free Cheerios: Safe or Not?

Gluten-Free Cheerios: Safe or Not? Part 2

 

In Johnna’s Kitchen

Five Things You Need to Know About “Gluten-Free” Cheerios

Effecting Change

Cheerios

Please sign and share the petition on Change.org.

We are divided.

On one side of the gluten-free community who have gotten sick from the so-called gluten-free Cheerios, those who have seen them get sick and are refraining from trying them, and those who are aware of the processes and testing General Mills is employing and refuse to go near them.

The other side of the gluten-free community are those who have eaten the so-called gluten-free Cheerios without overt symptoms and those who have been compensated in one way or another to be cheerleaders for gluten-free Cheerios and are leading unsuspecting people into the the void.

You cannot ignore the reports of all the people who have said they have gotten sick when my post Pissing In The Gluten-Free Cheerios was shared on Facebook or on the Change.org petition I started. It’s there, in black and white. This is a high rate of reporting on something labeled gluten-free.

You would think that with all these reports, there would be more compassion from the community as a whole. That we would unite to make sure more of us in the gluten-free community don’t get sick.

Right?

I’ve seen comments from those who ate the gluten-free Cheerios, say they didn’t react, then wonder why people are upset. Or they are asymptomatic and say they’ll keep eating them.

Did we all forget that lack of symptoms doesn’t mean no reaction? That lack of symptoms could mean gluten is doing silent damage to your body? That enough silent reactions could lead to bigger health problems down the line?

How about those who are being rewarded by General Mills? The ones who  were flown up there and have been singing gluten-free Cheerios praises ever since?

Many of us got into blogging to share our stories and recipes. We do it without pay or any type of compensation. Eventually, some find sponsors who compensate the bloggers for their posts in favor of their product(s). I think there are only a handful of bloggers who can walk the line of advertising a product and maintaining the integrity of their blog.

Yes, I said integrity.

If you have integrity, how can you keep cheering on a product like gluten-free Cheerios and encouraging people to buy it when so many are falling ill?

As a former advocate in the mental health field, seeing wrong and wanting to make it right comes naturally. When a vice-principal sits across from me telling me he’s sure another student isn’t bullying my client because “he wouldn’t do something like that” when I know my client would lie to me, I don’t sit there and say, “Okay, if you say so.” No. I tell him he better take care of the situation or if I get another report of bullying from my client, I’ll make sure it will be the last.

Integrity, once lost, is hard to regain. Those of you beholden to General Mills need to re-evaluate what is more important: your integrity and the safety of the gluten-free community or monetary gain?

I don’t mince words. I don’t sugar coat. I don’t blow smoke. My former clients know this. While it stung being held accountable in the moment, they appreciated me because they knew my actions meant I cared.

This situation of people getting sick is unacceptable. After reading so many comments from people about their physical reaction, I started the petition. Action needed to be taken.

We need to unite. We need to stop thinking that just because “I didn’t react” that everyone else is wrong or out to get a food giant. We need to put aside personal gain and support those who are suffering.

This is a community issue and we need each other to effect change.