(Dude note: The following appears in the current issue of Simply Gluten-Free magazine, a magazine that will not take Cheerios’ advertising dollars. Please check them out.)
When I was diagnosed will celiac disease in 2007, I had never heard of the word “gluten” before. And now it’s estimated that the gluten-free market will reach $7B (yeah…that’s a B) in sales by 2020.
How did we get here? Where does the celiac community go from here? How do we know who to trust? So many questions, so let’s get to it self-interview style.
Hey Dude. How’s it going?
I only have 1,200 words so let’s skip the small talk.
Fair enough. What was it like to find gluten-free food when you were first diagnosed?
In a word: challenging. We thankfully had a store nearby (Wegmans) that had just started labeling their own brand of foods with a “GF” if it was gluten-free. Besides that though, it was tough. Restaurants didn’t know what it meant. Most foods weren’t labeled. Your friends looked at you like you had two heads. But I’ll tell you what, in a sense it was actually easier back then.
How so?
Gluten-free wasn’t a fad yet so when you talked about your safety needs, you were actually listened to.
And now?
Now it’s all about the money. Sure there are some great companies doing it the right way for the right reason. But there are WAY too many companies doing it simply for profit.
How about an example or two?
I thought you’d never ask. Let’s take two of the biggest pizza chains in the country: Domino’s and Papa Johns.
To great fanfare, Domino’s released a gluten-free pizza in 2012. The celiac community went nuts; until it was determined that it was not safe for us. As a matter of fact, they still have a disclaimer on their current site that says “Domino’s pizza made with a Gluten Free Crust is prepared in a common kitchen with the risk of gluten exposure. Therefore, Domino’s DOES NOT recommend this pizza for customers with celiac disease. Customers with gluten sensitivities should exercise judgment in consuming this pizza.” The sad thing is that they actually partnered with a popular celiac association as part of their release. Yeah…it was a real s**t-show. Of course they still call their pizza “gluten-free”, my fellow celiacs are still buying it and people are getting sick. Sigh.
Now Papa Johns recently announced a gluten-free pizza, yet they also say it should not be eaten by anybody with celiac disease or a gluten-intolerance.
Then why did they make it and who is it for exactly?
It’s a million dollar question with a $7B answer (yes…that’s a B again!) Look, I always say that the celiac community does not “own” gluten-free and most large companies are in business for one reason and one reason only: to put hordes of money in their pockets. Hey I get it…capitalism at its finest. But when it’s done to the detriment of the people who NEED to be gluten-free, well that just sucks.
It’s a gluten-free minefield out there and since it’s become a bigger and bigger fad, I find it actually more difficult to be taken seriously. I don’t need 13 kinds of gluten-free crackers to choose from. I need for my disease to be treated seriously and with the respect it deserves.
Anything you want to say about Cheerios?
Not without my lawyer present.
Why do you think the fad started? Who do you point to the most?
Celebrities and the media.
How irritating are the celebrities and who has helped or hurt our cause?
Let’s break it down a bit.
- You’ve got the Jennifer Esposito’’s, who go public with their celiac disease and spend their time advocating and trying to help the community. Annoyance scale: non-existent.
- You’ve got the Gwyneth Paltrow’s, who don’t have celiac disease but still believe you can be ultra-healthy by going gluten-free (with cheat days) and are very public about it. Annoyance scale: 7 out of 10.
- You’ve got the Kim Kardashian’s, who are clueless, think it’s a weight-loss tool and promote it to their bazillion followers. Annoyance scale: 9 out of 10. To be fair though, anything the Kardashians do is 9 out of 10 on the annoyance scale.
- And you’ve got the Dean McDermott’s, who actually have celiac disease and could be a great advocate for us, yet still eat gluten and are public about it. Annoyance scale: 10 out of 10.
Why did the media jump on the bandwagon?
Don’t get me started on the media. They are always looking for a story and with all of the media outlets these days, there is high competition. So I expect nothing different from them then what they’ve always done: scrape the bottom of the barrel for a buck.
How about beer?
I’d love one.
No. I mean what is the current state of gluten-free beer?
It’s the same old story of gluten-removed beer vs true gluten-free beer. For those new to the game, gluten-free beer is just that. No gluten ingredients used. Period. Safe to drink. Cheers to that.
Gluten-removed beer actually uses gluten ingredients (usually barley) and through a method that is not scientifically valid (and frankly is pure BS), they say enough gluten is removed to get it under 20ppm. But like I said, it’s not valid. The FDA even agrees and does not allow gluten-removed beer to be labeled gluten-free. But that doesn’t stop the gluten-removed beer companies from still marketing their beer as gluten-free. Yeah…they suck. I guess they’re not too proud of being called “gluten-removed”.
Now the gluten-removed beer companies will tell you that their product is completely safe for those with celiac disease. And sadly, a lot of people in the celiac community are either unaware that their beers are actually not gluten-free, or don’t care because “dammit…I want beer that tastes like beer.” (Dude note: There are now several gluten-FREE beers on the market that are spectaculous. Of course they are not nearly as easy to find as the removed beers. Sigh again.)
Which brings us to some recent new. There is a brewing company called Hepworth, around since 2001, that produces a gluten-removed beer that they say is safe for celiacs. From their website, here is how they make the gluten-removed beers, which of course they are calling gluten-FREE.
We are pleased to announce the launch of a range of beers which will delight beer-lovers who are gluten intolerant, suffer coeliac disease or who wish to avoid potential allergens. We’ve selected a low protein barley – gluten is a protein. Traditional malting and brewing methods, when employed meticulously, result in the breakdown of the protein and then fine filtration removes any residue. The result is an authentic craft beer, gluten free, traditionally brewed, with no compromise on quality, taste or strength.
Well guess what? They recently announced that they are recalling an entire batch of their “gluten-free” beers because…wait for it…it contains EXCESSIVE LEVELS OF GLUTEN (and yes, I’m shouting.) Here is their official statement:
Bottles of Classic Old Ale with a best before date of 20-08-2018 have shown a higher than expected level of Gluten. Accordingly we are recalling this batch of beer, as it is not Gluten free. We apologise, but assure you that the beer is in all other respects a very acceptable brew. Celiacs can expect the next batch to be up to our usual standards.
Let’s break this down, shall we?
- They call their beer “gluten-free” even though it’s not.
- They mess up an entire batch, putting the celiac community at serious risk.
- They say the batch, in all other respects, is a very acceptable brew. Seriously…that is what they said. It’s acceptable, you know, except for that one thing that will attack the intestines of the thousands who will unknowingly consume it. Besides that, hey cheers!
- They tell the celiac community “Hey…no worries…you can still trust us. We’ll be using the same crappy process but it will never happen again.” Uh huh.
I will say it over and over and over again folks. Do not consume gluten-removed beers.
Ok…I’m out of time. Any last words on the state of gluten-free?
I will say this. Where I used to write an article a week about the media and its troubling relationship with gluten, I hardly write them anymore. The Kardashians have been pretty quiet about it lately (although the Jenner’s may pick up the slack.) And the community seems to be coming together and making our voices heard.
So there is hope. And as I always say…”Hope is a good thing.”
Great article! You’re as clear as bell when discussing such a muddled, messy subject!
I was diagnosed in 2001 and I had an easier time then in knowing what really was gluten free. Now that the world thinks it is easy to be GF because of all the food labeled GF, and menus which say the restaurant has GF food, my life is way easier staying at home preparing food from whole food in my safe kitchen than being sociable and trying to explain why I really can’t eat the food labeled gluten free because, well, it isn’t gluten free enough. My family and friends think I am a food obsessed fruitloop and have pretty much left me off the invite list now. Thank you money makers and stock market junkies who look only at the bottom line of their portfolios while dreaming of their retirement in luxury. My time is running out. My hope is too. I have accepted that I will not see our society care about its’ people more than money before I die. As long as people with Celiac believe the labels (which they do) and the menus (which they do) and vehemently protect that belief with misinformation everywhere, things aren’t going to change any time soon.
Great article, as always, Dude. Keep the info f lowing. We are listening.
“Barley” and “malting” does not provide me ANY comfort in their process. That sounds SO scary! I feel ashamed for those with celiac disease that buy into these products. So not worth it. A co-worker tried to tell me last week that I can have a corona because her friend with celiac disease drinks corona. My response? I’d love to chat with your friend about her celiac disease. Clearly has not educated herself enough about the long term consequences. Then makes the whole community look “overdramatic” when we avoid these products. Thank you for always shining a light on these issues and never holding back!
Malting isn’t scary– it’s just the process of taking a grain, moistening it so that it starts to sprout, then toasting it to stop the growth, dry it out, and develop the flavor. When a grain sprouts, it develops enzymes that convert the starch in the grain to sugars which feed the growing plant. It’s what they do with sorghum to make the malt for gluten free beers. Malted barley– poison to us. Malted sorghum– great stuff, and the base for several brands of GF beer.
What’s even better than malted sorghum is malted millet. That is the grain that produces a beer that comes closest to “real” beer. You can brew with this and not know the difference. I brew my own. But your point about clarifying what malted means is correct, as opposed to barley.
Yeah, I was trying to keep it simple to make the point about malting not being a problem, just the grain that’s malted. Interesting to see your comment on millet. (It gives GF breads a good flavor/aroma, too.) Glutenberg says ” millet, buckwheat, corn, quinoa and amaranth are only a few examples of the grains we use on a daily basis”, although from the diagram on their website, it doesn’t look like they malt any of them. Do you know of any commercial GF beers that use malted millet?
Some of the better ones do but they are not available on the east coast where I live and if they were would cost a lot more than I would pay. That is why I brew my own. Those breweries do use malted millet by Grouse malting, the same kind I use. You can order it from glutenfreehomebrew.org
I went into a pizza shop with my husband and kids this weekend and saw a note on the door that they now have “Gluten Friendly pizza.” In my mind that is a huge hint that the pizza is anything but friendly for a celiac!! I do hope that more people can become educated. This is much more than a “diet” and we can’t “cheat!” I love your articles GD, they help so much! Thanks to you I have never given in to trying (not so) “gluten free Cheerios” and I have learned so much about how to avoid cc.
Thanks Gluten Dude for a brilliant article. I appreciate all you do to keep us informed and healthy.
Yes companies are out to make a profit! That’s what companies do. Anyone who starts a business is out to make money, I mean why go through the headache of starting a company if you aren’t going to make money?!. You don’t start making and selling your arts and crafts out of your garage just to break even. Yes, right now it’s expensive. That is to be expected. It takes a lot to start making things truly gluten free. You literally have to build new facilities, you have to buy things from establishments that can garuntee that the product is GF, this means that no equipment can ever be used to harvest or process anything other than GF grains. Plus, with the exception of rice, corn and oats, none of the GF alternatives are mass marketed. Thus only a bare handful of grower supply them. When the demand for these crops go up, so does the price until other growers catch on and start producing them too.. then the price will start to go down. It’s not cheap or easy to churn out a GF products on a mass scale because up until recently nobody wanted it. Like Cell phones. Back in the late 80’s early 90’s cell phones and plans were $1000.00+ a month, but as they grew and the product got more competition, so now it is rare for someone not to have one. This, like technology needs time to grow, as it does, it will be more wide spread and cheaper.
I went for a drink yesterday and asked if they had any gluten free beer? The answer I got was “budweiser”! My response was “budweiser is not gluten free and please do not tell people it is”. Bartender continued to disagree saying it’s made with rice so it’s gluten free.. yikes!
Miss you GD. Thought of you yesterday when i heard I’m in love with a Jersey Girl. All the best to you. You are my favorite advocate for this debilitating disease. I advocate every day-every little bit helps.
Love,
Jersey Girl
“Hope is a good thing, maybe the best thing, and no good thing ever dies.”
Question, you said you only had 1200 words, but it is 1351, 1241 if excluding bold words…