WW: Living with Food Allergies — Trust and "The Man."

Name Tag MKFull disclosure: Denise and I both work for government. So, yes, sometimes, we’re “the man.” And, yes, we understand the jokes (we really are here to help), and we fully understand the limitations of working within institutional guidelines. I like to think we inspire trust through competence and, at least in my case, admitting that I don’t know things and will need to look them up.

There are a lot of trust issues that come with having food allergies. You have a lot to learn, and a lot to remember, and a lot to cover in your own advocacy for yourself. You have to place your trust in other people — your friends, family, and co-workers — to help keep you safe, to learn along with you, and to put themselves out to help keep you safe. You have to trust your doctors and other healthcare professionals. You have to trust waitstaff and kitchen staff every time you decide to eat out. In these situations, you are face-to-face with at least some of the people you’re placing your trust in.

But we also have to place trust in nameless, faceless corporations, who aren’t really people, and who we don’t see. We can call them or e-mail or tweet in their general directions, but the amount of faith it takes to trust that entity to be honest on their labels and not to have screwed up? Or to know anything about allergies? Or to, honestly, care? It’s epic. And there is not a lot that builds faith and trust in corporate care for our personal health.

I’m guessing that most of our readers who are also allergic (I know some of you just come for the recipes!) are already receiving FARE recall notices. This is an e-mail service that will alert you of all the voluntary recalls for mislabeled or cross-contaminated or otherwise potentially deadly food products for people who have allergies. This is a really amazing service, as there is no other central place to find out if your favorite chicken and rice soup has accidentally been replaced with chicken noodle soup, but labeled chicken and rice, so you might need an alternate plan for lunch. Great as it is to know these things, it’s also scary to see how often these glitches happen.

Why? Why do they happen? Sometimes there is a mix up with labeling machines. Sometimes certain allergens are left off the label accidentally, or a recipe is changed and the label isn’t, or a line was improperly cleaned, or an allergen was accidentally added to a product, or the product got labeled with another product’s label entirely. If you don’t have allergies, this would be, at worst, kind of annoying. When you do have allergies, it’s more than a little scary to see how often our industrial food systems fail us. All these provisions for labeling, for allergy labeling, for cross-contamination prevention best practices? They fail sometimes.

And there is the fact that what needs to be labeled isn’t as comprehensive as we’d like — a topic which we’re planning to tackle, but has involved more research than either Denise or I thought. Allergen labeling is partly mandatory, partly voluntary, and just generally inconsistent. It doesn’t cover anything involved in “processing,” doesn’t cover allergens that are considered to be denatured by the removal of the protein (e.g. soybean oil need not necessarily be called out as “soy”) and other things that, if you’re lucky enough to not have allergies, you have never needed to know.

You very likely occasionally need medication, produced by massive pharmaceutical companies who use all sorts of random and wonky “inactive” ingredients. Want to experience frustration? Try finding out what is in your drugs. Then try finding drugs that do not contain your allergens — even the pharmacists do not know. They can likely tell you what is IN your drugs, but not give you other options that do not contain your allergens. There is no database for this, and inactive ingredients can change at any time.

Other times, it’s a failure of knowledge. It’s a small place that bakes gluten-containing and gluten-free breads in the same kitchen, using the same mixers and tools and pans. It’s the local cafe that doesn’t understand that toasting the gluten-free bun in the same toaster as the gluten-containing buns in the same toaster equals cross-contamination. It’s the doughnut shop that uses the same tongs for the nut-covered doughnuts as for the plain doughnuts. Some of these things you can see happening, some you can’t, and can you remember to ask all those questions each time? As I think we’ve said before about restaurants — if you can honestly tell me you cannot safely feed me, I respect that. That’s why I’ve usually got a snack in my bag.

Maybe you think you can avoid it and just never buy any prepared foods anywhere, or any kind. You can eat entirely raw or vegetables only or become a fruititarian. And maybe those are options for a few of us. Frankly, my list of allergens makes it hard enough to feed myself without any other restrictions I’d choose to impose upon my diet; my rule is “if I can eat it, and I want to eat it, I eat it.”

And anyway, that won’t necessarily protect you. We all buy ingredients. When there was a story last year about some of Bob’s Red Mill gluten-free flours in Canada having been cross-contaminated with gluten, I was frankly terrified. If you buy gluten-free flours, you’ve bought Bob’s, as they are the only company who sells single-ingredient gluten-free flours (not just blends) at most major grocery chains. If we can’t trust them, can we trust anyone or anything?

It isn’t that these companies are bad. In fact, many of them have great, socially responsible business practices, and many of them seek to do right by their customers as well as their employees. But safety for food allergens sometimes goes far beyond basic good food safety. Finding the balance comes differently to each company.

Trust is a really difficult issue for people with allergies. It is definitely more difficult when you aren’t able to see your food produced, know the people who produce it, or trust the companies who make it and the agencies that are supposed to monitor them.

Name Tag DeniseI’m just going to be upfront and say that a combination of my life and work experiences (having experienced a fairly dysfunctional childhood and having previously spent ten years as a divorce lawyer) have resulted in me having a pretty pessimistic view of humanity as a whole. I thought I was suspicious, hardened cynic before the food allergy apocalypse hit. Now I’ve hit new heights of paranoia and contempt for corporations (especially those in the food industry), some regulatory agencies particularly those regulating food and the environment, our political institutions, and our medical institutions, that I didn’t think were possible. Yay me, way to overachieve! I’ve always been a bit Type-A. 

Trust. With what I’ve been dealing with on the corn issue, I don’t have any left. Using Bob’s Red Mill as an example since Mary Kate brought it up, their products are rife with corn cross-contamination because corn is run on the same lines. So I could be fine with one package and not fine with another package, which means I’m going to avoid Bob’s Red Mill products because it’s like playing Russian Roulette. Bob’s Red Mill isn’t doing anything wrong because corn is not a top 8 allergen so they are not required to label it, it’s just for me cross contamination can cause a major problem. There’s nothing on the label to tell me there might a problem, and without someone contacting the company, I wouldn’t have had enough information to make an informed decision about whether or not to use the product. I’m bummed about the whole thing because I really liked their products before the whole corn thing went down. 

One of the people in the Corn Allergy & Intolerance Group on Facebook tells a story about how her mom found some English muffins that didn’t have corn on the ingredient list, and when she opened them, there was corn meal all over the bottom of them. When she called to complain, she was told that was just part of the manufacturing process and they weren’t required to label it. 

The other thing that cracks me up are the companies that state their product is corn free, and then it turns out that half the ingredients are derived or grown on corn, but allegedly “all the protein” is processed out of it. I am no longer an adherent to the “protein processed out of it” theory. Because there’s a whole crap ton of corn ingredients that should be “safe” for me, and they aren’t. I’m pretty damn sure that I can’t make myself get psychosomatic blisters all over one foot from an exposure, or make my face and body blow up like a balloon, or get cystic acne. Of course, those are just the symptoms that I’m pretty sure the medical community couldn’t blame on a hysterical or emotional response, not counting the other nasty digestive and insomnia reactions. 

Now on to the FDA and labeling. Basically, I’m screwed. Even if I assume that a product has not been contaminated in the “manufacturing process”, there are currently 336 items that I have to look for to make sure I’m avoiding all my allergens. Because corn is not a top 8 allergen, that means I have to speifically look for the 185 corn derivatives. I have a spreadsheet on Google Docs that I can get to with my phone, but practically speaking this means that any food product with more than two or three ingredients doesn’t make it into my shopping cart. If I don’t recognize it and can’t search for it on my phone, I don’t buy it. Even meat and fresh fruits and vegetables are corn contaminated with the cleansers and the waxes and polishes they put on them. And if I buy organic fruits and vegetables, that just means the waxes and polishes are made with organic corn. Even if you contact some of the companies, the people that work there don’t really know how stuff is made and you have to exchange a bunch of emails to find out that you probably shouldn’t eat it anyway, or be told that they can’t give you the information because it’s “proprietary.” You know what? I think I should have a right to know what’s in my food and personal care products. Period. No matter what it is, no matter how it gets there, whether it’s just part of the “manufacturing process”, whether it’s “proprietary”, or whether it’s a GMO or not. But I’m pretty sure that the lobbyists will make sure that that doesn’t happen, because when you’re really forced to take a long hard look at what’s actually in your food, you stop buying a lot of processed stuff because you (a) can’t and/or (b) get sort of grossed out. This means that the processed food put out by really large corporations have a lot of market share to lose, and won’t make as many campaign contributions, so the system doesn’t work to help those of us eating the products. And given human nature, unless you’re really forced to deal with this because of your health, most of us take the path of least resistance and just throw stuff in our carts that looks like it tastes good. 

Although I was not terribly trusting of the medical establishment before the food allergy apocalypse hit, now I just don’t trust the system at all. If you do not fit into the mold of the “normal” patient with “normal” illnesses, you can pretty much forget having your medical professionals look for anything outside their comfort zones. I’ll go, but I have little faith now that they will actually figure out what the problem is and know how to treat it, if it’s anything outside the norm. I’m now prepared for doctors to discount or dismiss my symptoms if they can’t make it fit into what they think they know about food allergies. And if you need specially compounded medicine, your health insurer will make it really expensive and difficult to get because they don’t want to pay for it. You are pretty much on your own to do your own research because you can’t trust a poor primary care physician or nurse practitioner to find time to research patient issues when they have to see as many patients as they can to make the organization they work for as much money as possible. 

So after that thoroughly depressing elucidation of my lack of trust in everything, what’s the point of it all other than getting to whine about it in a blog post to you guys? The point is you have to take control and do your own homework and do what makes you healthy. Because you can’t trust anyone else to do it for you. I’m not sure if this is an empowerment pep talk, or just the cold hard reality. 

 

What are your experiences in contacting companies to ask questions about your personal health needs? Does anyone have good news to share? Anyone got a favorite company they deal with or buy from?

    Talk to us.