Tuesday, March 4, 2008

Our Allergy Story, Part II: Debunking the Food Allergy Myths

In Part I, I discussed how my son was diagnosed with Eosinophilic Esophagitis (EE) and discovered a little about what it's like to be abnormal.

What follows is either an important advocacy statement, or a personal rant, depending on your perspective.

Most people would consider living with a food allergy to be easy. After all, there are enough food regulations and labeling laws that it should be clear what foods are safe and which are not, right? Well, there are several myths surrounding this issue that even some people with allergies don't understand, and I guarantee that if you put yourself in the position of a person with severe food allergies, you will be angry by the end of this post. Yes, that's a money-back guarantee.

Myth #1: If a food contains a common allergen, it will clearly say so in the ingredient list.

The Food Allergen Labeling and Consumer Protection Act (FALCPA) took effect in 2006. In theory, the act says that any food containing one of the eight most common food allergens must say so in plain English in the ingredient list or an allergy statement. This was a comfort to us when we first read about it.

But then we talked to some nurses at our allergy clinic and a nutritionist who told us that this is not the case. Apparently, companies can get around this law. The following is a list we were given of what could be in the ingredient list without needing to explicitly specify that it contains egg. All of the following indicate the presence of egg protein:

Albumin
Apovitellis
Avidin
Cholesterol free processed eggs (egg beaters)
Egg
Eggnog
Egg whites or yolks
Egg white solids
Globulin
Livetin
Lysozyme
Mayonnaise
Meringue
Ovalbumin
Ovamucoid or Ovamucin
Powdered Eggs
Silici albuminate
Simplesse (fat substitute)
Vitellin
Surimi

And all of the following could indicate the presence of egg protein:

Flavoring (natural or artificial)
Macaroni
Nougat
Pasta
Lecithin
Marzipan
Marshmallows

Yes, that's right: flavoring is on the list, which is in almost any processed food. How can this be, considering the law says they have to say that it contains egg in plain language? This didn't make sense to us, and at first we were skeptical of what the nurses told us. And to be fair, other competent medical professionals were telling us otherwise. So we thought some were just being overly cautious, but to be on the safe side we did what they told us, which means that we had to call the food manufacturer of every product that contained flavoring.

Most of the response was comforting. They would typically tell us "Yes" or "No" on whether the product contained egg, and this information was consistent with what was on the label. We learned to ask also, "What is your companies policy regarding food allergy labeling?" And the answer was normally encouraging, "Our packaging will always say 'egg' if the product contains egg." Great. That's what we thought. That is the law, after all.

But then we came across a notable exception. One representative of a company seemed not as confident as others we had talked to.

Company: "Well if it contained egg, I would think the ingredient list would say egg." (Tip off that they don't know what they're talking about: they use the words "I would think" or "probably").

We pressed further, and they confirmed that the product does not contain egg. As always, we then asked what their general policy was.

Her: "We follow the law, so it will say egg if it contains egg."

Us: "Well actually we've been told that sometimes companies don't have to say egg."

Her: "Let me confirm our policy, please wait a moment"

Her: "Yes, you are right. We use the following words on our packages which may indicate that they contain egg..." She then listed ingredients similar to ones I listed above.

We were both shocked and horrified. It turns out the nurses were right. Companies can apparently get away with it. Which means that if you're allergic to egg, or pretty much anything for that matter, you have to call every company that lists "flavoring" on their product to confirm that it doesn't contain egg.

You'll be even more shocked to learn which company this was. It must be some mom-and-pop shop that doesn't know what they are doing, right? Surely any respectable food company would follow the spirit of the law and be clear on their labels. So which company was this?

My wife says I should say the name, but suffice it to say that if you think of the first large processed food company you can think of, you might have it. If you need to know, post a comment with your email address and I'll email it to you.

(Note: Since we had this experience, our allergy doctor--who is now telling us that his nurse was wrong and that labels do have to say "egg"--told us that the food company representative must have been mistaken. I hope he is right, but who do I believe? We'll probably be putting another call into company X to see if I can confirm their policy again. And this leads me to my next myth.)

(Updated 3/30: We sent another email to the company and they assured as that the product will say it contains egg if it contains egg. So we've received conflicting information on this, which supports my conclusion regarding the second myth.)

Myth #2: If you call the 1-800 number on the package, the customer service representative will be able to tell you whatever food allergy information you need.

I touched on this in describing Myth #1, but there are other examples too numerous to go into here, but I'll mention a few.

Most companies are good, but we've also been made to feel like idiots:

Us: "Hi, we have a son with an egg allergy, and we'd like to know if this product contains egg."

Company: "Well, sir, do you know what the top eight food allergens are?"

Us: "Yes I do, but..."

Company: "Well, are you aware that it is the law that the ingredient list must say in clear language if the product contains one of those ingredients?"

Us: "Yes I'm aware that's what the law says, but..."

Company: "Well let's review the ingredient list together and we'll see if it contains egg."

Arg. I can read, people.

But worse than that, some company representatives have no idea what they are talking about.

Us: "What is your companies policy on food allergy labeling?"

Company: "Well if it contains a food allergen, it will probably say so in the ingredient list."

Probably? Since when to company policies contain the word "probably?" If I play Russian roulette, I'll probably be OK, but sorry, that's not good enough.

Myth #3: If the food contains a food allergen, there will be a food allergy statement on the package, such as "CONTAINS: WHEAT".

This one is just plain wrong, but I have no idea why it can't be true. Why is it so hard for food companies to put this on their label?

But even worse than that is that some food company representatives don't even know that this is a myth.

Us: "What is your policy on food allergen labeling."

Company: "If our product contains one of the top eight food allergens, there will be a food allergy statement clearly stating so starting with the word CONTAINS."

Us: "Really? Because I'm looking at one of your products now and the ingredient list has wheat, but there is no food allergy statement."

Company: "Oh, well that must just be because it's one of the first ingredients listed."

What we wanted to say: "OK. So how many ingredients do we have to read before we can be confident that your product doesn't contain an allergen? Five? Seven? Eighteen? So what you told me isn't really your policy at all, is it?"

Who was this company? Chances are you probably ate some cereal they sell this morning.

Myth #4: If the product contains an allergy statement, such as "CONTAINS: WHEAT", then you don't have to read the ingredients because all of the major allergens will be listed.

This one is one that I think is supposed to be true. But it still isn't. Just today, I ran across this label (highlights added):



Notice that one of the ingredients is "Soybean oil", and it has an allergy statement, but the allergy statement doesn't say that it contains Soy, which is one of the most common allergens.

And this is one of the two companies I previously mentioned.

(Updated 3/30: After some more research online, we discovered that soybean oil doesn't actually contain soy protein, which is why they don't have to say it contains soy if it contains soybean oil. If you are allergic to soy, you may or may not also be allergic to soybean oil, so that's one more complication to add to the puzzle. Fortunately we're not in that boat.)

Conclusion

So why should you care? So what?

A law that is not enforced (or that has sufficient loopholes) is worse than no law at all, because it gives a false sense of security. If we had not done our research, we would have believed these myths.

If you have a food allergy, be aware of these myths and fight against them.

If you don't have a food allergy, be sensitive to those around you that do. It's harder than you think to live in a world that wasn't made for you, especially when you have to deal with competent medical professionals that are giving you conflicting information.

Thanks for reading my story. No, it doesn't have much to do with the main purpose of my blog, but I thought my experience was worth sharing.

3 comments:

colleeeen said...

the whole mess sucks. you are probably going to have to get very friendly with your local hippie/health food store. they have a lot more experience in catering to specific diets and the employees can be very helpful. they will also carry some specialty food brands that are geared toward allergies or other restrictions (gluten-free lines, soy-free lines, etc).

Anonymous said...

Keep in mind, also, that you need to read the labels EVERY TIME. Producers change food formulations, and what was once safe could become dangerous.

BTDT

Mike L. said...

Colleeeen,

Unfortunately our local "natural" foods store is about 40 minutes away. We've gone to it a couple of times, and it's been a bit of a cultural experience--which is neither good nor bad.

And interesting thing about going there is that we did not find much that he could eat (although he's only had positive tests for egg, our doctor has recommended he stay away from nuts as well just to be safe, and just about everything is processed in the same facility as peanuts). The ironic thing is that the natural food stores tend to do a better job of labeling, which means they tell you if there might be cross-contamination. That means you find less you can buy. If you go to the normal super-market it seams like there's a lot more you can buy, until you realized that it's just because the labeling is not as specific.

anonymous,

Yes, that's a good point. We actually asked one food company why they didn't have a "CONTAINS" statement, and their response was that since ingredients change so much, it would be too hard to keep updating the contains statement. Oh cry me a river--I wouldn't want to make their lives harder or anything.