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 2015 GFE Retreat

Back: Johnna, Me, Shirley, & Linda Front: Valerie, Katie, & Diane Photo from Johnna Perry, used with permission.

Back: Johnna, Me, Shirley, & Linda
Front: Valerie, Katie, & Diane
Photo from Johnna Perry, used with permission.

I just spent an amazing weekend with some of my favorite people. It’s been two years since I last blogged about getting together with friends at Shirley Braden’s for a retreat. It was another year of menus with multiple dietary restrictions, but no one ever felt deprived.

Johnna's Scout Cookies. Chaz immediately wanted one when I texted him a picture.

Johnna’s Scout Cookies. Chaz immediately wanted one when I texted him a picture.

Most of us arrived Thursday. Shirley had vegetarian chili cooking in the slow cooker and Jennifer whipped up her famous salmon cakes. Right before dinner, Shirley baked some sweet potato biscuits and Linda made sure her Chopped Veggie Salad was good to go. There was also wine and Johnna’s Scout Cookies. And how can I forget her sriracha cashews?

No one went hungry and everyone ate easily according to their needs. Notice how healthy doesn't have to be boring?

No one went hungry and everyone ate easily according to their needs. Notice how healthy doesn’t have to be boring?

While we sat in the living room chatting and checking social media, I autographed a couple of books my friends brought. It was an honor since packing space is a premium when we come to the retreat and my book is pretty thick. I enjoyed a Viennese Tea Cookie and a Penguino from Mariposa, a gluten-free bakery based in San Francisco that Diane ordered some treats from.

This is what I finished and published instead of creating new recipes. I wouldn't take back that decision at all.

This is what I finished and published instead of creating new recipes. I wouldn’t take back that decision at all.

Just a few of the Mariposa treats. All gluten-free, most are vegan. Penguinos, croutons, graham crackers, & Viennese tea cookies. Thanks to Diane for ordering & shipping them to us.

Just a few of the Mariposa treats. All gluten-free, most are vegan. Penguinos, croutons, graham crackers, & Viennese tea cookies. Thanks to Diane for ordering & shipping them to us.

The next morning, I made a meatless variation of my Winter Hash, using Japanese sweet potatoes and spinach. We topped it with leftover chili, egg, and avocado. We took our time getting ourselves together for the day and before we left for our trip into Fredericksburg, the goodies I ordered from Annie May’s Sweet Café arrived. Let’s just say some of my friends discovered a new kind of crack in the Mini Oatmeal Cream Pies. We also pulled out the Kite Hill brie style cheese to enjoy on some of the Mariposa batard. I thought the cheese needed to be baked with some preserves. We also had Treeline cheese. Both cheeses are nut based and so much like real cheese that I wished they had been around when I had to be dairy-free. I can still enjoy them now though. They are both great brands to look out for if you miss cheese. (And better than the popular faux cheese with tons of ingredients, imo)

Meatless Winter Hash, leftover Veggie Chili, egg, avocado, and bacon. Great way to fuel up!

Meatless Winter Hash, leftover Veggie Chili, egg, avocado, and bacon. Great way to fuel up!

Brie style cheese from Kite Hill on Mariposa gluten-free, vegan batard.

Brie style cheese from Kite Hill on Mariposa gluten-free, vegan batard.

Treats from Annie May's Sweet Cafe. Ginger Cookies, Lemon Cookies, and Mini Oatmeal Cream Pies. Everyone was happy.

Treats from Annie May’s Sweet Cafe. Ginger Cookies, Lemon Cookies, and Mini Oatmeal Cream Pies. Everyone was happy.

We wandered around downtown Fredericksburg, checking out stores that looked interesting or that we visit yearly. I usually find a Christmas gift or two, but this year, nothing screamed out: BUY ME! We stopped briefly at Kickshaws, a small market run by a friend of Shirley’s whom we met last year. She wasn’t in the store when we arrived, but they are working on expanding and adding a kitchen and they are now serving some pre-made foods and goodies. I spotted a delicious looking egg salad sandwich in the case (I’m a sucker for a good egg salad sandwich), Johnna bought some gluten-free, vegan brownies, and Valerie bought the gluten-free, vegan Peaches & Cream cupcakes. As for me, I bought some local ground coffee (you can never have too much coffee) and a snack package of green olives. I ate the olives on my flight home and they were DELICIOUS.

If only I could take the TARDIS to visit my friends ALL the time. Talk about having your cake and eating it too with all that wibbly wobbly timey wimey.

If only I could take the TARDIS to visit my friends ALL the time. Talk about having your cake and eating it too with all that wibbly wobbly timey wimey.

Kickshaws had a wonderful array of gluten-free, vegan treats on display. The brownies were divine and the peaches & cream cupcakes were pure bliss.

Kickshaws had a wonderful array of gluten-free, vegan treats on display. The brownies were divine and the peaches & cream cupcakes were pure bliss.

When we were done, we headed to Bistro Bethem for dinner where I ordered a delightful Bordeaux Blanc, the chef created two special vegan dishes for our table, and Katie Oliver joined us. While Katie isn’t a gluten-free blogger (or even need to be gluten-free), she is a friend of Shirley’s who introduced the two of us on Twitter a few years ago and it’s been BFF fun time ever since.

Not only did we have the menu items to choose from, but the specials on the board too. They were able to easily modify dishes to our needs. I ordered a Caesar Salad (no croutons) and the Stuffed Quail. I was not disappointed at all. Upon checking out the dessert menu, Johnna and I decided we needed to try the Butterscotch Pots de Crème and the Lemon Parfait. Johnna ordered one of each for the table to share. And Valerie ordered a blackberry sorbet. The Butterscotch Pots de Crème was my favorite. Let me tell you, it is a joy to be able to go out to dinner and pass something around, not worrying about getting sick.

Does this look unhealthy, bland, or like any of us were deprived? You can find great food with multiple food restrictions while traveling. Photos and photo collage by Johnna Perry. Used with permission.

Does this look unhealthy, bland, or like any of us were deprived? You can find great food with multiple food restrictions while traveling.
Photos and photo collage by Johnna Perry. Used with permission.

Back at home, after chatting, laughing, and getting into comfy clothes, Johnna made some milkshakes. We had to check the Basil Hayden’s for quality control first though. It’s required. Bourbon drinkers have to make sure the non-bourbon drinkers are getting the good stuff. Johnna used the leftover raw chocolate ganache in the Vitamix that Valerie made for raw tarts, bananas, ice, bourbon, homemade bourbon chocolate sauce, an avocado, and probably a few other things I missed while my back was turned coating the inside of the mason jars with the chocolate bourbon sauce. She garnished the milkshakes with coconut bacon and the brownies she bought from Kickshaw’s. I wanted to lick the mason jar clean, that’s how good they were. We also had some of Linda’s Chocolate Coconut Candy that she brought with her.

Did someone say chocolate?

Did someone say chocolate?

The next morning, I started off with a Ginger Cookie from Annie May’s Sweet Café with my coffee. While I love ginger and don’t mind a heavy hand with ginger in baked goods and dishes, I know it’s not everyone’s jam. These cookies were perfect with coffee (as I imagined they would be when I ordered them) and had just enough ginger to keep non-ginger lovers from being overwhelmed. Later, Diane toasted some the Mariposa batard and smashed some avocados to top it with, and Valerie made Key Lime smoothies using what was leftover in the Vitamix from the filling she made for more raw tarts. The breakfast was so simple and delicious in that simplicity.

This might have been my favorite breakfast of the weekend. I can't decide yet.

This might have been my favorite breakfast of the weekend. I can’t decide yet.

We ate dinner earlier than usual because Linda had to leave early. It was a whirlwind in the kitchen with Johnna making grain-free, vegan japchae and grain-free, vegan “crab” cakes. I think we all helped in some way or form. Just don’t tell anyone that I added lime juice to the “crab” cakes that wasn’t supposed to be in it. It’ll be our little secret, okay? For us meat eaters, we had real crab to pick apart and pick through.

One of my favorite pics of the weekend. I'm pretty sure it's because of the crab.

One of my favorite pics of the weekend. I’m pretty sure it’s because of the crab.

We weren't the only ones sad to say goodbye to Linda.

We weren’t the only ones sad to say goodbye to Linda.

Later, Shirley drove me, Katie, and Johnna down to Rick’s at Fairview Beach for drinks and sunset. Johnna and I hopped out to the beach for pictures (and I took off my slippers). I saw my first sun dog and we listened to No Green JellyBeenz. Decent band.

A Castaway that tasted like cough syrup because I didn't mix it first. I'm thinking that any alcohol intended for consumption should NOT taste like cough syrup. It was better after I mixed it, but once you get that idea in your head, that's all you think.

A Castaway that tasted like cough syrup because I didn’t mix it first. I’m thinking that any alcohol intended for consumption should NOT taste like cough syrup. It was better after I mixed it, but once you get that idea in your head, that’s all you think.

Grounding...

Grounding…

2015 GFE Retreat 172015 GFE Retreat 182015 GFE Retreat 19

We returned home and had “fourth meal.” The raw vegan tarts that Valerie made (from the Choosing Raw cookbook by Gena Hamshaw), baked Kite Hill “brie” with mango jam on Mariposa batard, and S’mores dip made with Enjoy Life chocolate chips and Dandies marshmallows (Mariposa gluten-free graham crackers and Johnna’s homemade vegan graham crackers). I went a little overboard and warmed up the chocolate bourbon sauce and added that to the S’more on my plate.

So many goodies that we all had a little of each.

So many goodies that we all had a little of each.

The next morning, we made bibimbap pizza using the leftover japchae and topping it with a fried egg. I know it’s technically not bibimbap, but c’mon…a fried egg on pizza! We said goodbye to Katie [insert sad Debi face here], did some art journaling, and said goodbye to Diane, Johnna, and Valerie. We totally forgot to try the Peaches & Cream cupcakes that Valerie bought from Kickshaws, so I got one out. I’m not necessarily a peaches and cream lover, but the cupcake was delicious and really felt like I was eating peaches and cream.

Me & Katie...check out her sass! One of the many things I love about her.

Me & Katie…check out her sass! One of the many things I love about her.

Leftovers on a Mariposa gluten-free, vegan pizza crust. We wound up just eating them with our hands.

Leftovers on a Mariposa gluten-free, vegan pizza crust. We wound up just eating them with our hands.

With everyone gone, I finished the book I was reading, The Ruins by T.H. Hernandez, who happens to be a friend I made when we were both focusing on our gluten-free blogging. We fell out of touch when she stopped blogging and reconnected as fellow authors. Funny how life works, yeah?

Shirley and Mr. GFE (yes, I finally got to meet Mr. GFE!) took me to Dockside at Colonial Beach for dinner. I chose the Norfolk style scallops and pretty much demolished my food. Hello, baked potato! Goodbye, you yummy thing.

I want a baked potato just looking at this photo. I know, I'm crazy.

I want a baked potato just looking at this photo. I know, I’m crazy.

I made some Earl Grey tea and indulged in the Lemon Cookies from Annie May’s Sweet Café Sunday evening. It was a great pairing with the flavors complimenting each other.

Before I knew it, it was Monday afternoon and I was saying goodbye to Shirley, Mr. GFE, and Sonny.

Even though I had an EPIC bar in my bag, these olives that I found at Kickshaws were a tastier treat on the airplane.

Even though I had an EPIC bar in my bag, these olives that I found at Kickshaws were a tastier treat on the airplane.

The weekend was indulgent, none of us was deprived of anything despite our varying needs, and once again, Shirley makes us feel as if we are home away from home.

Returned to the grind as soon as I was at the gate and continued on the plane. The Downward Spiral won't write itself!

Returned to the grind as soon as I was at the gate and continued on the plane. The Downward Spiral won’t write itself!