When I started blogging I told myself I was never going to post one of those "I'm sorry" posts after a long period of time without posting. Saying I'm sorry implies that there are people that are offended. I'm assuming no one was offending by me not posting for over two months, so I don't feel the need to apologize.:)
As I've mentioned earlier, my son was diagnosed with Eosinophilic Esophagitis (EE), a rare (but increasingly diagnosed) disease which can cause people to be allergic to a wide variety of foods. Often, EE patients cannot eat any food or only a handful of foods. These patients, like my son, are kept nourished using special total nutrition formulas which usually need to be taken via a feeding tube. Fortunately, the disease is not fatal. However, it is chronic and can significantly impair quality of life. To learn more about it, view this video produced by the American Partnership for Eosinophilic Disorders. It is touching, and for my family it hits close to home.
This has been a trial for my family, and as things came to a boil I could no longer sustain regular posting here. I'm not sure what the future of this blog will be. For the few of you still reading this blog, let me tell you that I would not trade our trials for any of yours. I'm grateful to have a son that teaches me that you don't have to be "normal" to be happy. I try to keep a positive attitude, because I don't want my son growing up feeling like a victim. If we want him to be strong, we must show him how.
Showing posts with label Eosinophilic Esophagitis. Show all posts
Showing posts with label Eosinophilic Esophagitis. Show all posts
Saturday, August 2, 2008
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.
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.
Saturday, March 1, 2008
Our Allergy Story, Part 1: Learning to Be Abnormal
Mormons like to think of themselves as abnormal. In general, we take pride in stepping away from the mainstream. In every other way, my family is pretty average. We're white; married with two kids; middle-class; paying off our 30-year fixed-rate mortgage; and have two legs, two arms, and two eyes for each person. Yet, I thought I knew what it meant to be abnormal because of my religion. I don't drink coffee or beer and don't swear. Wo is me, my poor persecuted soul! But in the last few months I've learned that I really had no idea what it means to be truly abnormal.
That was until my son was diagnosed with Eosinophilic Esophagitis (EE for short), which is a somewhat rare chronic disease that manifests itself through inflammation of the esophagus. The symptoms are brought on because of exposure to allergens. Most people with EE are allergic to multiple foods and/or environmental allergens, so naturally we were concerned. Later we found out what he was allergic to: egg. Phew, what a relief. Just egg? We can handle that. Our life of normalcy lives on!
But who knew that egg is in a lot of foods, and many ingredients most people would not associate with egg are derived from it (see Part II). Our lives quickly changed as we became the "food police" to investigate every ingredient in every food that came even close to going into our son's mouth.
But of course there are worse things that could happen. Having a food allergy isn't the same as being blind, losing an appendage, or getting cancer. Yes, of course there are more difficult things. But this was our first glimpse of living life in a world not made for us.
So what? Our society looks out for the less fortunate, right? Every building is wheel chair accessible. Braille is everywhere, including drive-through ATMs (yes, drive-through). But what I've learned is that the things we do to help the less-normal are really just gestures to make everyone else feel better about being normal.
Stay tuned for Part II: Debunking the Food Allergy Myths.
No, it's not the hottest of topics, but I think after reading it you might be a little bit angrier, if that's what you're looking for.
That was until my son was diagnosed with Eosinophilic Esophagitis (EE for short), which is a somewhat rare chronic disease that manifests itself through inflammation of the esophagus. The symptoms are brought on because of exposure to allergens. Most people with EE are allergic to multiple foods and/or environmental allergens, so naturally we were concerned. Later we found out what he was allergic to: egg. Phew, what a relief. Just egg? We can handle that. Our life of normalcy lives on!
But who knew that egg is in a lot of foods, and many ingredients most people would not associate with egg are derived from it (see Part II). Our lives quickly changed as we became the "food police" to investigate every ingredient in every food that came even close to going into our son's mouth.
But of course there are worse things that could happen. Having a food allergy isn't the same as being blind, losing an appendage, or getting cancer. Yes, of course there are more difficult things. But this was our first glimpse of living life in a world not made for us.
So what? Our society looks out for the less fortunate, right? Every building is wheel chair accessible. Braille is everywhere, including drive-through ATMs (yes, drive-through). But what I've learned is that the things we do to help the less-normal are really just gestures to make everyone else feel better about being normal.
Stay tuned for Part II: Debunking the Food Allergy Myths.
No, it's not the hottest of topics, but I think after reading it you might be a little bit angrier, if that's what you're looking for.
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