Celiac Disease, a Daily Risk Management Challenge

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Living with celiac disease makes eating into a near-constant exercise in risk management.

My friends have seen me subject wait staff to the Celiac Inquisition many times: Was anything else fried in the same oil used for the French fries? Did they use the pasta water for regular pasta before they used it for the gluten free pasta? Do the spice mixes have wheat in them? Does that marinade use soy sauce –which, unfortunately, also usually includes wheat? Did they put the gluten free bread in the same toaster oven used for regular bread?

Even though I ordered the gluten free version, is what you gave me REALLY gluten free or did someone not get the memo? (File this one under seemingly obnoxious but surprisingly necessary.) And then, my favorite: what the hell is that piece of macaroni doing in the bowl of mussels I just finished?

My biggest question is harder to get a good handle on. Is the kitchen staff convinced that gluten free is a “fad lifestyle choice” or do they understand that it’s a real medical issue for some of us?

Is the kitchen staff convinced that gluten free is a “fad lifestyle choice” or do they understand that it’s a real medical issue for some of us? Click To Tweet

After all, if you read enough of those supposed “service journalism” articles that insist ad nauseam that you don’t need to go gluten-free if you don’t have celiac disease, you could be forgiven for thinking that there is a national epidemic of people avoiding gluten. (I won’t validate these ubiquitous articles by posting links, but you can find some easily enough.)

I’m grateful to those fad people for increasing the demand for gluten-free products. That has made it so much easier to find gluten-free foods.

But the media’s misguided “it’s only in your head” narrative has drawn too much attention away from the real threat: that so many so-called gluten-free products don’t live up to their claims. For people with celiac disease, that’s dangerous. It leads not only to headaches, fatigue, and skin and excruciating digestive symptoms, but also to an increased risk of lymphoma and colon cancer.

All of these “disservice journalism” articles about the non-crisis of non-celiacs eating gluten-free reinforces food companies’ idea that gluten free food is mainly a way to charge a premium price. Way too few of them give enough thought to doing it in a way that is safe for the people who depend on their products actually being gluten free.

Whole Foods regularly sticks regular bread in the gluten-free freezer, no matter how many times they are asked to stop it. Shortly after I was diagnosed in 2010, I found that out the hard way when I neglected to look at the label of the bread I’d pulled from the gluten-free freezer.

You may have caught the puff piece that National Public Radio did recently on a company called Bob’s Red Mill, whose products dominate the gluten-free baking section of grocery stores.

Early on in my days of adjusting to life as a celiac, I discovered that Bob’s Red Mill was the go-to brand for non-wheat flours, even though their rice flour was grainy and their flour mixes went way too heavy on the garbanzo and fava beans so had a metallic aftertaste.

I also learned quickly about xanthan gum, which binds together baked goods as a replacement for gluten’s key role in baking. Bob’s Red Mill usually was the only brand in the store.

Xanthan gum is made by immersing a bacterium in a sucrose solution. As it ferments, the solution causes the bacteria to secrete a substance –I’m not sure if this “secretion” is barf, sweat, or poop, and I don’t really want to know the answer—that is then dried and ground into xanthan gum.

The sucrose base can be made from a number of substances –most frequently corn, but also rice, beets, or the last thing you would want to make a gluten substitute from: wheat. Yes, wheat. If you’re having trouble getting your head around that, it’s not just you.

I found this out after months and months of trying to figure out why I was still having symptoms even though I thought I had eliminated wheat from my diet. A batch of Christmas cookies finally pointed me to xanthan gum as the culprit.

Researching online, I learned that many other celiacs could not tolerate xanthan gum either. So I asked my best friend’s brother-in-law, one of the world’s top experts on digestive biology, why that might be.

When he suggested that cross-contamination was the problem, I had a hard time believing it. But I very quickly discovered a blog post on the Bob’s Red Mill website about xanthan gum. That’s where I learned that it used wheat to make the stuff.

It’s perfectly reasonable to think that a company on whose products so many people with celiac disease depend would make sure that its products were safe for them –especially a key ingredient in gluten free baking.

Because its xanthan gum tested at below 20 parts per million –the FDA’s questionable standard for allowing companies to call their products gluten free—somebody at Bob’s decided that it wasn’t important to include that on the packaging. They did include a “certified gluten free” label, which draws into question the whole certification racket as well, but that’s a soap box for another day.

You could only find out about this dangerous ingredient on the company blog, where Bob’s bent over backward to reassure people with corn, soy, and dairy allergies that none of those products were used to make its xanthan gum.

By contrast, it poo-poohed multiple complaints from customers that the product was making people with celiac disease sick. You can see the comments and its responses on this link to the blog from 2017 before they scrubbed the posts from people begging them to stop using wheat in their xanthan gum or at least prominently display it on their package.

Maybe the company really did think they were doing the right thing, and blindly believed the experts. But the number of unhappy customers should have made a light bulb go on much sooner.

Bob’s finally switched to non-GMO corn as a base for its xanthan gum in August 2018. It updated the blog post about xanthan gum –and scrubbed the complaints.

I wrote here recently about Boeing and some airlines’ blind spots to their customers’ risk perceptions. You may have seen the new headlines about safety issues with the Britax stroller and how the company refused to recall it.

These, along with the Bob’s Red Mill story, are clear examples of how companies ignore obvious safety issues at the expense of their customers. They need to stop it.

It makes no business sense. Not only do these companies risk huge fines and lawsuits, but they alienate the people who otherwise could have been life-long customers.

Eating can involve so much drama, uncertainty, and risk decisions that when people with celiac disease find a product or restaurant we trust, it gets our loyalty.

Bob’s Red Mill failed utterly to understand that its toxic xanthan gum created life-long disillusion. I should have been one of its life-long customers. Instead, I refuse to buy not only its xanthan gum but any of their products.

This article is part of my new weekly LinkedIn series, “Around My Mind” – a regular walk through the ideas, events, people, and places that kick my synapses into action, sparking sometimes surprising or counter-intuitive connections. 

To subscribe to “Around My Mind” and get notifications of new posts, navigate to Around My Mind  on LinkedIn and click the blue button on the top right hand on the page. Please don’t be shy about sharing, leaving comments or dropping me a private note with your own reactions.

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Michele Wucker

Founder & CEO at Gray Rhino & Company
Michele Wucker is a global thought leader and the author, most recently, of THE GRAY RHINO: How to Recognize and Act on the Obvious Dangers We Ignore (St Martin's Press, 2016). Learn more about her at http://thegrayrhino.com/about/michelewucker
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Michele Wucker is a global thought leader and the author, most recently, of THE GRAY RHINO: How to Recognize and Act on the Obvious Dangers We Ignore (St Martin's Press, 2016). Learn more about her at http://thegrayrhino.com/about/michelewucker

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