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Petition for Clearer Food Labeling
Food Allergy

An Open Letter About Food Labeling and FAST's Role in Changes

Dear FAST visitors,

Much of the information on the FAST website (including this page) relating to US labeling is now (as of January 1, 2006) officially out-of-date. I hope this letter will help briefly explain what occured in the time since this outdated information was written.

In 1997 I became very ill from ingesting unlabeled allergens. This led me to do an extensive amount of self-directed research regarding United States labeling, and come up with a petition on October 25, 1997 for FAST members to send to the FDA. This petition pointed out important gaps in labeling laws which allowed any allergen to be present in a food label quite vaguely, including in the terms "natural flavorings" and "spices," but also in terms such as "modified food starch" (although this specific gap was more widely known). After making these discoveries, I wrote to other allergy groups and asked them if they would like to be a part of this labeling campaign.

Sadly, most food allergy groups did not even respond to this plea, but a couple of websites did join and either post the petition on their website, or a link to it.

The FDA acknowledged the petition (May 13, 1999), e-mailing me that, though they were receiving it, it did not meet their requirements for an acceptable petition. Lucy Shriver of the Gluten-Free Kitchen and I teamed together to come up with a petition that was ultimately accepted, as demonstrated by its "docket number" and inclusion in PDF format on their website.

Despite the fact that other allergy groups soon started their own similar campaigns, a Harvard Law Student did her final massive research project on this in 2005, discovering FAST's petition was the first one that brought this important issue to the attention of the FDA. according to Laura Derr, the "FDA cited this ground-breaking consumer effort as one of the reasons it was calling for the 2001 Public Meeting" (419).

Unfortunately for those with multiple and uncommon food allergies, the newer campaigns, started by other groups, focused on only the top eight allergens needing to be listed. The petition by Gluten-Free Kitchen and FAST focused on every food, since every food has the potential to be an allergen and to cause harm or death to an allergic individual.

Certainly, other groups had better organization and more realistic goals. It is delightful that such incredible changes have been made that will benefit and hopefully help save the lives of those with the top eight allergens.

However, it is nevertheless disappointing that a campaign our groups worked so hard and for so long on has been changed so vastly from what we first envisioned. Lucy and I have discussed this and, since neither of us has been contacted by the FDA or any other group regarding labeling, we are keeping up the old petition. We do not know if hope is gone for inclusive labeling; we do know that we do not want to give up hope that such a goal is attainable.

In the meantime, it is important to acquaint yourself with the most recent and reliable labeling information, since this website's labeling information is now out-of-date. Visit http://www.FoodAllergyInitiative.org (outside link) for more information. While ultimately not of benefit to those with lesson common allergies, these are nevertheless monumental and hopefully even life-saving changes for those with life-threatening reactions to only the most common allergens. This is no small feat, and we must be exceptionally grateful to the organizations and Congressmen who worked so diligently to see these changes take place.

Melissa
January 15, 2006


Common Labeling Misconceptions


Because most of the labeling information on this page is now out-of-date and online only for educational purposes, the following article, entitled "Common Labeling Misconceptions," is hopefully up-to-date information. It was last updated February 19, 2007.

All ingredients are listed on a label.

Unfortunately, this isn't so. Beginning in 2007, common allergens should appear on a label. However, this does not benefit individuals with allergies other than the "common" eight--most FAST members have indicated they have allergies outside of this sphere, so the new labeling is of little benefit to such individuals. There are still many terms on labels that should be treated with caution. Three of the most common are "artificial flavorings," "natural flavorings," and "spices."

"May contain" listings on labels are mandatory.

No. These labels are voluntarily put on labels by some (not all) manufacturers. It is legal for incidental food ingredients in small amounts to be in other food. To put this into perspective, think about your home kitchen and how easy it is to cross-contaminate something, just by using the same equipment.
Manufacturers may leave out incidental ingredients on the voluntary labeling (for example, it's not likely they would list "corn," as it is not currently deemed a "common" allergen), and also don't need to have this type of labeling on the product at all.
Many food manufacturers don't use "may contain" labeling. A lot of people with food allergies think this means the food doesn't contain any incidental ingredients. That is a mistaken assumption.
In reality, this labeling may often be a way for a manufacturer to protect itself from lawsuits, rather than to benefit the consumer.

Kosher labeling will help me avoid my allergens.

False. Kosher labeling is also voluntary, and really only refers to a few foods, with only one of them being a common allergen.

What I don't know can't hurt me.

Many FAST members have reported reacting to unlabeled ingredients in foods. It's possible to react to minute amounts of allergens, whether we know they're in the food . . . or not.

The following information is now outdated. It has been left online for educational purposes. You may be able to find archives of non-functioning websites at www.archive.org.


Background
Welcome Message
Petitions
Common Manufacturer Responses
FDA's Words
Petition Important Dates
Discouraging or Encouraging Words
Why is this a Heated Issue?
How Do I Know if I (or My Child) am Reacting to an Unlabeled Ingredient?
Personal Experiences
Why the Campaign Began
In the Media? Need an Interview?
How webmasters can help
Medical Disclaimer
Petition Information


Links of relevance


[Offical statement: Although FAST is the pioneer in addressing this situation (1997), we acknowledge that it is extremely unlikely that one group can make a difference, especially a group with no funds, corporate headquarters, PACs, or publicity, and only a relatively small selection of the allergic populace in membership. For that reason, we have assembled a list of groups and webpages that have more political pull/exposure who have since also addressed this issue. The more exposure this issue has, the more likely something is to change. We urge you to visit these sites and look into the efforts they have made.]

* Link to another food allergy petition to the FDA (although it does not include lesser-known allergens)
* Read about the ins and outs of the flavoring industry (thanks to Ray Hannas for this link)
Links sent in by Richard:
http://www.hgtv.com/hgtv/ah_personal_care_allergies/article/0,1801,HGTV_3143_1390463,00.html
http://www.supermarketguru.com/page.cfm/239
http://www.ific.org/foodinsight/2001/mj/allergylabelfi301.cfm
http://www.usaweekend.com/99_issues/990321/990321allergyfood.html
http://www.mhlw.go.jp/english/topics/qa/allergies/al.html (Labeling in Japan)
http://www.inspection.gc.ca/english/corpaffr/foodfacts/allergense.shtml (Labeling in Canada)


Background

Many of us are "living in the dark," unfortunately, when it comes to labels. We trust the manufacturers to list all ingredients, and to list them accurately. However, the FDA's current rugulations on the books provide for vague labeling, specifically 21 CFR 101.100(a)(3) and 21 CFR 101.22(h)(1) (CFR stands for "Code of Federal Regulations"). These rules are worth acquainting yourself with. Before further investigating this page, please visit http://vm.cfsan.fda.gov/~dms/flg-4.html and investigate the above mentioned federal regulations.

Upon investigation you will see that ingredients are allowed to go unlabeled if present in a minute amount (not lending a change to the finished food), or to go listed collectively (example: spices, natural flavorings).
This can be very dangerous to those with multiple, and especially with multiple severe and less common food allergies (for example, manufacturers are getting quite acquainted with peanut allergies and are listing them on labels more often if possible cross-contamination has occured -- the same may not be true for less-common allergies). Worst of all, most people don't realize that it is completely legal for manufacturers to leave food ingredients off a label.

Welcome

Welcome to the food labeling petition campaign! Whether you are reading this online or picked it up from your local support group, allergist, or health-food store, I want to say welcome, and tell you a little bit about this campaign.

The campaign was started October 25, 1997 due to complaints on a food allergy mailing list about vague labeling (which has resulted in anything from small allergic reactions to non-fatal anaphylaxis). At first it began as a campaign directed toward the FDA...however this provided discouragement to most people since the government has known about this problem for literally years and has done almost nothing to combat it.
Now to answer some common concerns. First off, this campaign is 100% free. There are no ulterior motives. It was started by a group of mothers whose children have allergies and adults who have allergies themselves. A concern for better labeling and safer, easier grocery shopping, is the only "ulterior motive" here. Please e-mail if you have a question or correction -- include specifically that this page is what you are questioning.

Grab those petitions!

If you are online, you will need to go to separate pages for the following petitions (click on the link):

FDA Citizen Petition Please note that, as time goes on, changes might be made to this petition, per FDA request.

Representatives petition

Send manufacturers a letter asking them to have clearer labels.


Common manufacturer responses

We can all relate to the following scenarios when calling a manufacturer to find out what hidden ingredients are present. Usually the customer will receive one of the following replies (in no particular order):
1) Quick answers. Be wary of these. If the person on the other end of the phone is not acquainted with food allergies, they may do no more investigating than you do. Thus they may not know what "natural flavoring," etc., can mean. On quite a few occasions they have "messed up" in my case.
2) Inability to name product's ingredients (often due to purchasing natural flavorings (or said ingredient) from a distributor. To combat this type of stale-mate, write down contact information BEFORE buying a product and let them know you won't buy it until you know what's in it.
3) Suspicion of caller being from a rival company, trying to learn their secret ingredients, and/or claim of it being proprietary information.This has happened to us, one company was quite rude and thought we were trying to steal their ingredient list! The proprietary information line is also a common one.
4) Saying they will call back and never returning call. How frustrating! And it DOES happen!
5) Reply within a few days after call (some manufacturers are helpful and will try their hardest to find out the answer to your question).A HUGE thank-you to companies who do this for us and go the extra mile -- even when it means that we can't eat the food due to the unlisted flavorings.


In the FDA's words

If you aren't concerned yet, you should definitely delve in to the FDA's food labeling guide. Available for readers at http://vm.cfsan.fda.gov/~lrd/qa2.html, this guide shows how foods can go unlabeled. For example, "However, the standardized flavor may simply be declared as flavoring, natural flavoring, artificial flavoring, as appropriate." Another link from the page says, "First, section 403(i) of the act provides that spices, flavorings, and colorings may be declared collectively without naming each one. Secondly, FDA regulations (21 CFR 101.100(a)(3)) exempt from ingredient declaration incidental additives, such as processing aids, that are present in a food at insignificant levels and that do not have a technical or functional effect in the finished food."


Petition important dates

October 25, 1997
Petition campaign began, directed only toward FDA. FAST is reportedly the first allergy group to bring this subject out in the open.

March 16, 1998
Labeling petition to our representatives in Washington began.

Spring 1999
Sully's Living Without magazine included information in their magazine about this petition campaign.

May 13, 1999
The FDA e-mailed me to let me (FAST support group leader, Melissa) know that the petition is in need of some format changes. I will update the petition (and indicate so on this page) as soon as I hear back on what those needed changes are. This is encouraging in some ways, because it shows that the FDA is receiving and reading the petitions.

May 18, 1999
Changes were made to the petition, and it is back online now. I want to thank the FDA for their very quick reply on this!

Summer 1999
Sully's Living Without magazine included information about vaguely labeled ingredients. This is the third time the campaign has been mentioned in the magazine (the premiere issue letters section (Lucy Shriver's letter) and Spring issue were the others). Thank you, SLW!

Fall 1999
Bella-Online article by Donna Stone featured an interview with Melissa Taylor (co-founder of FAST), and was about efforts for inclusive labeling. Viewable online at http://www.bella-online.net//health/allergies_feature_01a.html (Note that the quotes are confusing because they do not contain quote-marks -- this exclusion is not the fault of Melissa or the author.)


Discouraging or encouraging words (?!)

The FDA has a site regarding notes they have received from people with allergies, the most recent update being 5/30/97 (about five months before this petition campaign began). Although it is directed toward manufacturers, those who have sent a petition to the FDA will be happy to know that they are being heard. Visit http://vm.cfsan.fda.gov/~lrd/allerg7.html (or, if you are reading this as "hard copy," it may be appended (stapled) in this kit). You may like to print/photocopy this note from the FDA and send it to food manufacturers, along with a note about your experience. In other words, you can carry the campaign a step further, into contacting manufacturers about labeling laws and your personal experience. This page also offers encouragement to those who feel they cannot make a difference. We are being heard -- so please participate! The discouraging news is that the FDA has known of this labeling defect since June of 1996 and has really, so far, not done anything about it. They know about the problem, but they need to hear from you!


"Why is this a heated issue?"

Editorial
Unfortunately, I have noticed that many people consider petitioning to change labeling laws as a little impractical or "militant," for a variety of reasons. I would like to address the complaints I have heard in this editorial.
1) People don't believe it. A lot of people simply don't believe that it's legal for manufacturers to leave off ingredients. I was once like you, until I got seriously ill from a legally unlabeled ingredient (I have many times since, including vomiting, throat closing, etc. -- I have been diagnosed with severe food allergies four times by traditional medical blood tests and food challenging). In addition, the FDA admits that this is true, that it does exist, and has a page on their website addressing manufacturers of this problem. So, to answer those who don't believe it, it's true. Follow the links on this page to find more information on its validity.
2) Impracticality of inclusive labels. It seems unbelievable that manufacturers could list all of their ingredients, and I do see the validity of this statement. However, at the same time, a change in labeling regulations would also mean that manufacturers would have to be more careful with what they do allow in foods. In addition, sometimes when we have called about a vague term, such as "spices," it turns out to be "only garlic oil." What is the point of putting "spices" on a label when you can just write "garlic oil" instead? When we called about natural flavors, it turned out to just be a milk product! It doesn't take up much more room to write out the "real" name, does it? So, to answer those who think it is impractical, yes...maybe at first. But in the long-run it should be beneficial.
3) "Out there." I can tell just from some "snubs" I get that it may seem like those who support labeling changes are "out there," "militant," or a little unrealistic. Many of us choose to ignore this problem rather than to face it head-on. If you would rather keep calling a manufacturer for each individual product you buy, then that, to me, is a little more "out there" and unrealistic. ;o)
4) It's too much too soon. I can almost agree with this one. That's why it's a good idea to try to work with manufacturers as well. Ask them to be more specific. Ask them to list cross-contamination possibilities. Call them regularly to see if ingredients have changed. Since labels are vague, you should diligently do this to ensure the food you or your child consume is safe.
5) Our family just purchases/eats organic, so we don't have to worry about unlisted ingredients, and none of this applies to us. This is a common belief that I have heard more than once. However, it simply isn't true! Organic foods can also have non-inclusive labeling. For example, say you make all of your own foods from scratch. You buy organic rice flour. Well, the company you bought the rice flour from may grind wheat or other flours with the same machinery, or in the same building. If a bit of wheat flour accidentally gets in, it does not need to be labeled. Therefore, even if you purchase organic whole ingredients, you may still find allergens present. Non-inclusive labeling impacts all people who have food allergies, whether they eat organic or not.
My main point is that it's not crazy to want to know what is in the food you're eating. I remember before I was diagnosed with food allergies (sixteen years late), I never even read labels. Now when I go to the grocery store and look at labels, I wonder how many people think I am weight-conscious and am checking out the nutrition label! If a huge nutrition label, which requires studies to find out what type of nutrition is in a product, can be on each and every package, why not a few more words of ingredients?
Doesn't sound too out there now, does it?

How do I know if I (or my child) am reacting to an unlabeled ingredient?

Although I would suppose the information has been available for some time about unlabeled ingredients, FAST was the first to bring it into the forefront and regularly remind the food allergic community of its validity (1997). How did we find out? My personal experience. I have personally had anaphylaxis from this on one occasion; and my most common symptoms from an unlabeled ingredient are severe vomiting with diarrhea and stomach cramps (I would equate these to be about ten times worse than the average stomach flu). My first experience with unlabeled ingredients is recounted on page 16 of Sully's Living Without, Summer 1999 issue.
There are a few ways to determine whether or not you are reacting to unlabeled ingredients. The following questions may help:
1) Are you eating a new manufactured food (in essence, one you have not tried before), and your symptoms started relatively close to the first time you ate that food (not before)? Many people say allergic reactions can begin 0-72 hours after ingestion. My unlabeled-ingredient-reactions generally start within four hours of my ingestion of the product, but everyone will vary.
2) Has the label changed on a food you have previously eaten? It could be that you just didn't notice a new ingredient has been added or has changed; however, on labels they can also just add a new vague term for an ingredient (example: modified food starch if they add wheat; spices for garlic oil). Sometimes things don't need to appear on the label AT ALL, such as cross-contaminated ingredients; this may pose a concern as it would not be easily detectable.
3) Does the label list vague words? Call the company. See if they will tell you what they are. If not, you may want to stop eating it, if you want to be on the safe side, especially if you have been getting sick.
4) Are you not eating anything else that you may be allergic to? Maybe you are reacting to something else? Or have a real virus?
5) Check for kosher, does it say something like U-D? That could be a hidden dairy product. I don't usually use kosher symbols -- in fact, I quit as it only accounts for dairy in my case -- but some people do. Remember that Kosher symbols are voluntary and will not be on all products.
The more questions you answer "yes" to (other than #4), the more likely it may be an unlabeled ingredient. If you have a fever or are becoming dehydrated, or are extremely sick, please don't hesitate to have someone take you to the hospital.
If you DO get sick from unlabeled ingredients, it may be a good idea to send off a letter to the manufacturer and let them know about it (after you have determined it was definitely an unlabeled ingredient -- you can call and ask first). Your diligence in doing so may keep another person from getting sick.

Personal experiences

"I had to call companies and actually ask people who worked there what was in their food. Some people were nice, and some laughed at me, and some were just plain rude. I didn't call about ingredients near as much as I should have..." - Kelsey
"I have had very severe reactions from unlabeled ingredients (calling afterward has verified their presence). I wish it were only psychosomatic, but the truth is, I want to expand my diet and try new foods! If all ingredients were labeled, I would definitely try new things more often." - Melissa
"Better food labeling would make for easier shopping. If I am comparing 3 brands of pizza sauce, for example, and two of them have "natural flavorings" and the other brand lists all ingredients, then obviously I'm going to pick the one that I don't have to call the manufacturer! Usually I want to use the product right away and won't bother to even buy it if I'm not sure what is in it. Reactions to unknown ingredients are hard for me to figure out because with my son it is night waking and vomiting and I don't know how soon those symptoms show up. If his reactions were life threatening we would never use ANY product with unknown ingredients, and probably wouldn't use much of any commercial products." - Becky
"In this case, what you don't know CAN hurt you. If I'm unclear about the ingredients in something, the manufacturer misses out on a sale and I miss out on some potentially delicious food. I may be a bit naive, but what do manufacturers have to lose by being a little more specific? (I mean, except for Colonel Sanders, who obviously doesn't want to tell us what his eleven secret herbs and spices are....)" - Shari
"If I happen to eat something unknowingly that contains nuts I have a nasty rash, severe, abdominal cramping and diarrhea, plus difficulty in breathing, swelling of the eyes, throat and mouth. My daughter also had similar signs starting as early as age 2. I do not understand why it is so difficult (or threatening) for food manufacturer's to list ALL ingredients on their labels. Honestly, if someone really wanted the exact recipe they could figure it out over time, trial and error! Maybe if a friend or relative of the people making the labeling decisions was affected with a life-threatening allergy they would be a little more understanding (not that I would wish this on anyone!) It is a shame that we live in a country so consumed with money and greed that the very simplest things are overlooked. What's even sadder is that not only the general public but health officials sometimes think that allergy sufferers are just sick in the head and that we are making up these symptoms or over-exaggerating them. I wish we, the allergy sufferers, could get our point across that we NEED this information for our health's sake! It has already been proven that peanut allergies CAN and HAVE killed but yet there is still resistance from manufacturer's to disclose all ingredients, no matter how minute. Where are their consciences?" (Denise R. Blogna).
"I've always had many problems from my food allergies that could have been avoided if there were better labeling laws. The most recent serious incident involved [a name-brand] ice cream. I e-mailed the company and was given an 800 number to call for information about the product. When I called, the woman I talked to was evasive, and said the ingredients were proprietary information. I asked if she would at least tell me if my allergens...are in the ice cream. She became very hostile, but finally did say that if corn was in it, it would be on the label. Corn is my worst allergen, and although I could not find out about the other too ingredients, I took a chance and ate a few spoonfuls. Big mistake! My pulse speeded up immediately, then I developed hives, and angioedema, I had gone into anaphylaxis. Fortunately, my throat didn't close up entirely, and after a while the reaction lessened. The next day, I again e-mailed the company with a very strongly worded letter. I got a reply from them, with a list of the eight most allergic ingredients, and the only ones the company puts on their labels. Corn was not on the list, so most likely was in the product. I feel that the woman I talked to, when I called the 800 number, lied to me just to get rid of me. That could have cost me my life. Corn is so widely used in foods products, that it is impossible to avoid it. It is a very common allergen, but will never be recognized as such, because it might inconvenience the food companies if they had to label it as being in their products" (Donna Hoaglin).

A lot of us write and complain about companies that have given us a hard time. But don't forget to write and thank companies who help you! Right now, all food allergy-helpful labeling is voluntary. For example, "may contain peanuts" is a voluntary warning on labels. You may wish to write to, and thank, companies who include this on their labels. Even though this warning might keep you from purchasing their products, remember that it may also help keep you or your child from getting sick!


Why the campaign began

The story of how this campaign began is a very personal one, as I would have never started it had I not reacted dangerously to an unlabeled product.
I have had symptoms of food allergies all of my life , beginning as a newborn. However, these symptoms manifested themselves into legitimate illnesses, or what appeared to be. If I had vomiting and diarrhea, the doctors diagnosed me with the flu. I also got frequent ear and sinus infections and bronchitis (despite the fact that I am never around smokers). Other symptoms were responsible for my diagnoses of acidic stomach, a soon-to-be ulcer, possible bacteria infestation in my intestines, and chronic fatigue (all of which I do not have) by traditional medical doctors.
I was finally diagnosed with severe food allergies at the age of sixteen, via a traditional blood test and food challenges, and have since been diagnosed three additional times, also via traditional medical testing.
Before I was diagnosed with food allergies, you'd never find me reading a label, unless it was to read the back of a cereal box for the games. I was never concerned with what was in a product, and needless to say, I didn't think I had to be.
If I did glance at a label, I never understood what vague ingredient listings meant. I remember specifically (perhaps even after being diagnosed) looking at a soup label and seeing that it said "natural flavors." I just figured that when the ingredients in the soup had been smoked, they had absorbed smoke from the fire, and had thus achieved a "natural flavor" (not true).
The first time I realized that vague labels didn't mean what they appeared to mean was when I became seriously ill after eating an enchilada that supposedly had ingredients I could have. I was sitting on a chair in my room, watching TV, calm and unsuspecting as could be. Immediately while eating the enchilada my throat felt very constricted, and it was hard for me to breathe. I also became very panicked and didn't know what to do. That was when I realized that all ingredients don't have to be on the label. The company never got back to our family, but the "chili powder" in the product would, most definitely, contain garlic, which is one of my top severe allergens.
Since then, I have reacted to "natural flavors" and other unlisted mystery ingredients numerous times. My worst reaction since then has been severe vomiting and stomach cramping and diarrhea, usually within four hours of ingesting the product.
After discussing this problem with other concerned consumers on the FAST mailing list in 1997, we decided to start a labeling campaign toward the FDA. Since then it has branched out somewhat, and is now a petition formulated by Lucy Shriver of The Gluten-Free Kitchen. Sully's Living Without has given this campaign media coverage in three issues of their magazine, the FDA has contacted us, and other webmasters have become interested in helping with this cause (some are in contact with other agencies that are also interested in helping to curb this problem).
I hope my personal story will help convince you to participate.

In the Media? Need an Interview?

Melissa J. Taylor grants interviews to the press on this topic. Magazines containing articles about vague labeling containing an interview with Miss Taylor include Sully's Living Without and Bella-Online. This is a completely FREE interview, in an effort to get the word out and increase public awareness. Contact Melissa -- http://www.angelfire.com/mi/FAST/inputform.html -- (with the subject line: "FAST visitor e-mail") to schedule an e-mail interview. If you know someone in the media, please ask him or her to consider this important story.

How Webmasters Can Help

If you have your own webpage -- food allergy related or NOT, you can help! Even if it's just a little family webpage that doesn't get many hits, you can still help by linking to this campaign. (This is no longer needed, since the petitioning has stopped. Thank you to those who participated!)
If you have a medical question about food allergies, please ask your allergist. It could be that unlabeled ingredients won't harm you or your child (especially if your allergies are mild). The best person to ask if you are concerned is your board-certified allergist. In addition, please note that the information on this page may be out-of-date, as regulations can be changed or reworded. It is best to follow the links and visit the FDA's webpage to find the most recent news on this subject.


This campaign was started by Food Allergy Survivors Together in 1997 -- the first food allergy group to tackle this issue, due to mailing list member request. It is not officially "endorsed" by any one group (i.e., there is no money or profit involved), and thus may be linked to from any webpage. Please do not charge people for the petitions.


Back to FAST
This website is for personal support information only. Nothing should be construed as medical advice.