Nickmom, Bake Sales and Food Allergy Portrayal in the Media

We aren't the first ones to
really, really hate this show...

So I'm trying to get incensed and dig up some outrage over the whole Nickmom allergy video. (The video has already been taken down or I'd link it for you.) But I'm just not feeling it, even after a couple of Red Bulls, despite how good a tirade would probably be for my web traffic.

I watched the video this morning before work so I don't remember everything, but the gist of it seemed to be that the extra demands of FA-aware bake sales stress the moms of non-allergic kids out. There was a table for "milk-free" and one for "peanut-free", etc. etc.

While I was watching it, I thought to myself "What an awesome school! Wouldn't it be great if that were REALLY the way a bake sale went?" 

Which leads me to ask the question: why was this video so very offensive to allergic moms?

Assuming nirvana was actually reached and the school/PTA/after-school group actually accommodated us and made separate tables at a bake sale for allergens, it probably would be pretty stressful for other moms to figure out. Just restricting peanut foods in the classroom or lunchroom has caused a backlash with some parents. As I've posted before, a national study showed that 50% of Americans think food allergy concerns are blown out of proportion.

Backlash...without the laugh track

So...Nickmom took an issue that we know is polarizing and exaggerated it for humor. That's pretty much the formula for cutting-edge comedy these days. Dozens of television shows (including the ones I wrote about in the very first month of this blog) have done the same thing. It wasn't very funny...but it also shouldn't have been surprising.

It's great that Nickmom has already taken the video down. However, removing the video doesn't change the thinking of the young man who wrote the video. It doesn't change the thinking of the moms who related to it and laughed at it. The video is the symptom of the disease, not the disease itself.

If we want Hollywood to portray food allergies realistically and sympathetically, not as a plot device for laughs or as a means to further divide a country that's already divided over food allergies, we have to change the heart and minds of the people who find the video funny in the first place. I think that's happening naturally to some degree (just as it did with AIDS, another disease that suffered from a social stigma) because more and more people know a child with allergies. But I also think the strident tone of some of the FA moms who posted comments works against us.

I concluded a couple of things after thinking about this for a while:

The pictures of the kids after allergic reactions are far more powerful than any words. There's nothing polarizing about a little baby face all swollen with hives, or a toddler in a crib at the hospital with an IV. We tell our kids to "use their words", but as adults, we need to use our pictures more. The stridency of our words can work against us; the pictures are the compelling message.

Dads need to speak up. I saw one dad comment on the site. His comment was very measured, very well done, and it got the most "likes" of any I saw. Why are our children's fathers not out there speaking for their kids? Let's ask them to do more.

I would love to see the energy from today, and those powerful images, preserved on a web page called something like "The Faces of Food Allergy." Anyone have the energy to make that happen? Perhaps the FARE group will make it a campaign someday.

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Harmful Things Food Allergy Advocates Say

If you've read my blog for any length of time, you know I have mixed feelings about advocacy and support groups. I do think there's just no other way to really learn the nuances you need to know to keep a food-allergic child safe. However, I also believe they spread fear, misinformation, ultra-conservative thinking...and, even at times, do outright harm. Let me give you some specific examples of where I think advocacy groups have crossed the line.

1. Peanuts are Poison.

This is like telling your child when their pet dies that it has "gone to sleep." It's a dangerous misrepresentation of the situation that is likely to lead to future problems.

In all likelihood, your child will need to undergo a food challenge at some point. It's possible (likely, in the case of milk and egg) that they will outgrow their allergy. (Remember that as many as 20% of children do spontaneously outgrow even a peanut allergy.)

What's going to happen with the child who's been told, over and over, that peanuts are "poison?" My guess is that they're going to have a very hard time adjusting their thinking and going through a challenge. That's how we end up with kids who refuse challenges, even when their doctor thinks the time is right, and who continue to avoid foods even when they've passed a challenge.

Don't do this to your kids. And, when you see advocates promoting this, don't put up with it. It's both technically wrong (an antigen response is nothing like the body's response to a toxin) and psychologically harmful.

2. Vaccines cause food allergies.

I don't know why I was so surprised to see this one come up in my Twitter feed. As I told that Tweeter, we have literally been having this conversation about the link between adjuvants and food allergies for 15 years. (The link above is to my community's old home. The story of why we left there is an instructive one in the abuses of advocacy groups...but probably better left for another day, although I will say that many of us are still disappointed the dedicated ice cream factory never came to fruition...)

This is an excellent poster if you want to be an excellent poster.

Here's the thing: anything that causes mothers not to vaccinate their children needs to have more scientific evidence behind it than "well, it seems like it might be true, so let's post about it." There is real potential for harm here. I have very strong feelings about this because I know a family who lost a baby to pertussis. Their baby was too young to be vaccinated. The neighboring family was anti-vaccine and their children came down with pertussis. They were fine; the baby died.

I'm not going to get into the overall debate about vaccines. However, the idea that peanut oil in vaccines is somehow magically sensitizing children to allergies has no basis in reality. First off, the adjuvant that's most often referenced in all this is a Merck product that was developed in the 1960s, well before the onset of the wave of food allergies. (An adjuvant is an ingredient, most often a metal or  mineral salt, that's added to vaccines as either a preservative or as a "booster" to enhance immune reaction.) Second, any peanut oil used in these situations would be in a highly-purified form that would be extraordinarily unlikely to contain peanut protein residue. Third, a quick perusal of vaccine inserts (I did this years ago, but did it again now just to make sure) does not turn up Merck 65-4 adjuvant or peanut oil in any form that I could find.

There is a philosophical concept called Russell's Teapot: if I want to believe that there is a china teapot orbiting the Earth, the onus is on me to prove my theory. Expressing a theory is not proof. To date, there has been no epidemiological or research link between adjuvants and food allergies. Remember, folks: many of these doctors and researchers are interested in food allergies in the first place because they have a child with food allergies. There is no reason to believe in a grand conspiracy here.

Advocates: before you start spreading this next round of hysteria on your sites, remember that there's a potential negative outcome here. There are babies that will die as a result of people's choices about whether to vaccinate. If you spread it, you own it.

3. Zero tolerance. Strict Avoidance

I am really sick of the conversation about food thresholds. But, I saw this one on an advocate board the other day and it ticked me off all over again.

I worked in the world of medical device during the time latex allergies became prevalent. The FDA at that time attempted a "zero tolerance" initiative for latex. Basically, every component of every machine — even if the components never had potential to come in contact with patients or medical staff — had to be declared. If even one O-ring contained latex, the entire machine was marked "contains latex."

Is this what we want? Do we want products marked for peanut, even if there's no detectable peanut protein? From a practical perspective, that would mean that any food that is ever done in a factory shared at any time with any other peanut products would be suspect. Since the vast majority of lines are shared, that would essentially mean just about everything would be labeled, other than the largest dedicated factories or those who are already catering to us.

We need to live in the real world. We need to understand the nuances of food manufacturing and the limits of testing. Most important, we need to project a willingness to discuss the issues, not just make a declaration, stomp our feet and leave. Why should food manufacturers work with us if we won't work with them, especially when we punish the manufacturers who are honest (and use "may contain" labels) and purchase foods from the manufacturers who don't?

Are there others that bug you? Add them to the comments! 


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Dr. Burks' Presentation at AAAAI: Related Tweets

So for those of you who are not obsessed with research, this weekend is the annual AAAAI meeting down in San Antonio. A number of immunologists and allergists tweet during the presentations to give those of us who are not lucky enough to attend a glimpse of the presentations.

This morning was Dr. Wesley Burks' highly anticipated talk: Immune Tolerance and Allergy: Can We Produce True Tolerance? Here's what the various tweeters had to say:

Several studies now indicate that food allergy is related to defective T regulatory response” Anne Ellis, M.D ‏@DrAnneEllis

Some studies suggest that when peanut tolerance develops, existing cells do not change, but rather, new populations of cells arise. Peripheral t cell tolerance is key.  Children who have outgrown non IgE-mediated milk allergy demonstrate detectable T regulatory activity. Sakina Bajowala, M.D ‏@allergistmommy

So these are things I've touched on in other columns. Somehow, a child's immune system gets off track when they're first born and develops an immune response that's similar to what the body uses to react to parasites (T2) rather than one that see proteins as harmless (T1).

The $64,000 question is: what, exactly, are these OIT trials (and, by extension, my son's FAHF-2 trial) actually doing? Are they changing the way the body responds? Or are they simply "stretching the balloon" as far as possible, but leaving the maladaptive underlying response intact?

This is important because, if the immune system is really not being changed, then it may be that desensitization and not true tolerance is the best we can hope for.

Allergic individuals form peanut-specific IgE, non-allergic form peanut specific IgG - IgG is a Normal response to a foreign protein. True Peanut allergic patients - their peanut specific IgE continues to rise with ongoing avoidance. Anne Ellis, M.D ‏@DrAnneEllis

Peanut OIT changes antigen specific Tregs and suppresses Th2 response to peanut. Sakina Bajowala, M.D ‏@allergistmommy

So it does appear that these studies are doing something to really change the immune system. That's positive, as there's more hope for true tolerance. It's also important to note that this idea of waiting for IgE levels to fall may not really be the signal for tolerance, as levels generally continue to rise as long as peanut is being avoided. How do the current studies do with regard to inducing desensitization?Assuming it works, how long does it last? Who does it work for?

Burks' studies: OIT for peanut lead to passing a 5000mg challenge while SLIT was only 1000mg. Participants in OIT trials-only 25% passed an oral challenge 4 weeks post treatment discontinuation c/w 75% while still on treatment. Anne Ellis, M.D ‏@DrAnneEllis

41% pts appear to be tolerant after 1-3 years of peanut immunotherapy Matthew Bowdish, M.D ‏@MatthewBowdish

Burks: Peanut OIT - those who developed tolerance had lower baseline PN IgE than those who did not. Dr Melinda Rathkopf ‏@mrathkopf

So there does seem to be a difference in the kids who will respond to the therapy and those who won't. Longer therapy is better. More direct therapy (OIT) works better than smaller doses (SLIT). And, it appears to last for 4 out of 10 kids if it's kept up over time. However, Burks' assessment of all this is:

Critical gaps in OIT/SLIT for food mean its not ready for routine clinical use. David Fischer, MD ‏@IgECPD

A future question to be answered: would starting with younger kids who presumably have more malleable immune systems improve the response? In order to find out:

Impact peanut study. 2000mg maintenance dose for 4 years. Multicenter study. Sakina Bajowala, M.D ‏@allergistmommy

W Burks announces IMPACT study targeting 140 children under 4 with #foodallergy to peanut. Wayne Shreffler @WayneShreffler

Burks' next study "Impact" - peanut allergic kids aged 1- 4 to see if OIT will be more likely to induce tolerance if started earlier. Anne Ellis, M.D ‏@DrAnneEllis

So...something to be on the lookout for if you have a child under the age of four and are just starting out on this fun journey.

What a wonderful glimpse into the #AAAAI world!  I am very grateful to these tweeters for sharing these conferences as they occur.

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How Come No One Paid Me to Blog About Auvi-Q?

The lady was a tramp...

Oh, Sanofi.

I'm so disappointed. I hear from my peeps that you flew a bunch of bloggers out to your headquarters, paid for their trip, wined and dined them...just so they'd have the opportunity to review your Auvi-Q^TM epinephrine injector.

Now I know what Mary Boleyn must have felt like, after giving it away to King Henry for free. Her sister held out for the Queenship and, sure enough, the king bought the Royal Cow in the end. (Of course, that story ended rather badly...but I'm sure the bloggers all got home safely with their virtue mostly intact.)

Maybe you didn't invite me because you knew I had already done my part to review the Auvi-Q. (Milk...cow...free...back in August, for heaven's sake!) Maybe you didn't invite me because I don't have enough readers.

Maybe you didn't invite me because of the (shhh!!!) bitch in my name.

But see? That's exactly why I've kept the BITCH in my name, despite it being offensive to some people. It reminds me, every single day, that I'm not out to make a buck, or a name for myself. I started this column because I was simply frustrated, and the day I start pandering to corporate overlords is the day I really want to stop writing. (That's what my day job is for.) The "bitch" stops me in my tracks before I start lobbying for FARE advocacy awards. It keeps me from taking myself too seriously.

Not that your funding the bloggers' trips influenced them in any way. I'm sure it didn't. Really.

If you had flown me out, I would have told you that, for the most part, I do like it. I think my son will like it. Smaller is definitely better (not that Mary Boleyn would agree).

But — and I admit this is petty — the name is pretty stupid. "U" and "V" are just not letters that naturally go together. I keep calling this thing an "Audi-Q"...and when I search on it that way, you know what I get.

So, yeah, could have spent a little more money with the branding agency to come up with something that doesn't make me think of cool sports cars or jr. high audio-video equipment.

I also think it's tough to figure out how to carry that second dose of epinephrine. Cell phone in one back pocket, first-dose Auvi-Q in another pocket...where does the second dose go? But again, that's pretty petty.

I also think the woman who does the voiceover ar-ti-cu-lates in an an-noy-ing- way. (Petty again.)

Less petty, though, is my fear of medical device failure. The Epi-Pen is a tried and true device with 25 years of history behind it. I hope the Auvi-Q does equally well when it comes to consistently working when called on...but I'll feel better once it has a track record. Until then, I'll probably ask my son to carry both devices.

Which sort of defeats the purpose.

If you had flown me out to meet, what I most would have wanted to tell you is that people who read my blog (or ANY of the blogs where you - um - encouraged positive product reviews with your generosity) are already using auto injectors. You're preaching to the choir. I guess it's good to take market share from Mylan if you can, but it would be better to simply get more people to carry epinephrine.

Perhaps you already read my column about Slacker Moms (and Mylan's "let them eat cake" product positioning failure ) since now you're apparently getting sued by Mylan for claiming that 2/3^rds of the people who should carry epinephrine simply don't. That's great that you're aware of the issue. But, as I said back in August, a cooler device and audio instructions aren't going to be the way into these people's hearts. (And Mylan...really? Meow!)

So, it's probably good you didn't blow all that money to fly me out, because I would have told you something you already knew: the concept of carrying emergency epinephrine is a tough sell. Too many people are willing to play the odds that lightning simply won't strike them.

I think it's great that we have another emergency option. But I can't help wondering what the world would look like if we had poured the money it took to develop and market this new device into research to simply cure this sucker.

It's not a zero-sum game, I know. But I just can't help but think that the $10k you guys probably spent to fly out eight or ten bloggers, just to reach people who are already on-board, is a conspicuous reminder of how much profit is at stake here.

Forgive me for hoping a cure will some day completely dry up your market.

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Why Food Allergy Parents Won't Use Thresholds

So apparently I woke the Tiger Allergy Moms with the "peanut is probably already in your food" blog post.

As I said in my follow-up post about food allergy cross contamination, I really didn't even realize this was controversial...or not common knowledge. After all, the study I cited (that showed 5% contamination with may-contain products and 2% contamination with products that had no label at all) was sponsored by FAAN (now FARE), overseen by Dr. Sicherer and carried out by FAARP, all cornerstones in our little food allergy castle.

However, poke a Tiger Allergy Mom and you're likely to get scratched. The blog post vaulted into my Top 5 for traffic and generated the longest comments exchange yet. I've puzzled over why this is and the conclusion that I've reached is that I unintentionally took away the Blue Ribbon for Total Avoidance. By saying that people were eating peanut they didn't know about, I was somehow apparently also saying their child's food allergy was not as serious. Here's the logic that I think is at work:

If lower threshold = more allergic

     and 

More allergic kid = need for stricter avoidance of foods

     then 

Not strictly avoiding foods means, by extension, that a child's allergy is less serious

I do understand this logic to a degree, since lower thresholds are often associated with more severe reactions. But — since most of us don't have any idea what our child's threshold is, we use our level of avoidance of allergenic foods to signal to others the severity of our child's allergy. After all, if your child is really allergic, super allergic, most allergic, truly allergic, then it's really important to avoid everything. Even microscopic exposures. Right? And if you haven't been avoiding those exposures (due to mislabeled foods), then your child is probably not as allergic...and you're somehow not as good a mom. Blue ribbon denied.

I didn't actually mean to stir this all up with my post, but it points out an important issue here: the logical approach of FARE and the FDA is in direct conflict with the emotional approach of FA parents.

The unintentional consequence of FALPCA was more food labeling, but not necessarily more helpful food labeling. I have commented before on our post-FALPCA experience of having roughly a quarter of all the processed foods we used suddenly sprout new warning labels. These were foods we had used for years in many cases (and called about in most cases). When we called again to talk to manufacturers, we were told that the food formulas had not been changed at all, but that warning labels had been added to give the most information possible.(In many cases, we suspected it was simply CYA, as some companies put the same, comprehensive warning labels on every food they made.) What were we to do? We dropped the foods, and our son's options were instantly far more restricted.

This is the concern manufacturers have with putting quantitative allergen levels on manufactured foods. If they start labeling, we will start avoiding, even if those foods have been safely eaten up until this point. Why would they willingly restrict their consumer base, especially when these foods are being (for the most part) safely consumed today? Why rock the boat?

FARE and the FDA have been studying the issue of food thresholds to see if there's a better way to report out the amount of allergen in foods than cautionary labels. There is also a lot of work going on right now to determine the distribution of thresholds using both direct research and probabilistic methods. Researchers know that there is a distribution of dose responses to allergens, and that only about 10% of allergic consumers (called the ED10 in industry speak) will react to levels at or below 12 mg, or about 1/25^th of a peanut.

There's another important concept that doctors and researchers accept: dose response. The concept here is that there is the start of a reaction where mild symptoms occur and a tipping point where more serious symptoms occur. The ED10 is higher for reactions that cause objective symptoms — things a doctor can actually see happening — vs. those funny sensations in the mouth or throat, or a stomachache. (Hence, the question on the survey about "would you eat a food that would cause only mild symptoms.")

The bottom line, though, is that all this new labeling and data will be useless if food-allergic consumers refuse to use it. Since the last missing piece of the puzzle is a food challenge to determine a child's actual threshold level, and the vast majority of parents will not want to have their child undergo a food challenge, there's going to be limited value to measuring allergens. Without that actual, objective data, food-allergic kids can all continue to be like the children of Lake Wobegon where every child is above average (or, in this case, highly allergic due to a microscopic threshold).

I think many of us parents really don't want to know, as we think quantifying our child's allergy will somehow create a stratification of "really allergic", "somewhat allergic", etc. It's the same resistance I perceived when I talked about the fear associated with component resolved food allergy testing.

I'm not saying this is easy, or cut and dried. But I do think more information is generally better. I hate to see a situation where both food manufacturers and parents of allergic kids really don't want to give – or get – more information. Is ignorance really bliss?


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Congrats! Your Child Passed a Baked Milk Challenge!

Clueless. Get it?

Now what?

I get a lot of questions about baked milk dosing: how much, how long to bake, what foods to start with, what order to give them. It's such a helpless feeling to have to say "I don't know" most of the time.

We are back to doing milk dosing, but things have been a bit haphazard in our house. We try to do the milk dosing right after school so there's time to deal with reactions if we have to. However, I have also recently started an on-site job and my son works most weekends, so it's been difficult to find the time.

About a week ago, I gave him his dose (individual rice puddings baked 50 minutes; approx. 1.5 oz. milk in each, or ~1.5 g protein), only to realize that I was signed up to drive car pool that day and had to leave! A frantic call to my husband, followed by him abandoning his work day to drive home, and at least we were covered. However, this is clearly going to get harder and harder for us to do, so I encourage all of you with younger children (and hopefully stay-at-home schedules) to not wait to pursue this until just before college.

Anyway, the point of this post is to summarize a really great article from AINotes about food challenges and baked milk dosing. Here are the recommendations from Mt. Sinai for challenges/food introductions:

• During the food challenge, give a muffin containing 1.3 g of milk protein (nonfat dry milk powder; Nestle Carnation) baked at 350 F for 30 min.
• If muffin tolerated, challenged same day (2 hours after muffin) with waffle (<0.625 inches thick to ensure thorough heating), containing 1.3 g of milk protein (nonfat dry milk powder; Nestle Carnation) cooked in a waffle maker at ~500 F for 3 min.
• If muffin/waffle tolerated, challenged 6 months later to Amy’s cheese pizza (Amy’s Kitchen, Inc), containing 4.6 g of milk protein, baked at 425 F for 13 min or longer.
• Muffin, waffle, and pizza were administered in 4 equal portions over 1 hour. Subjects were monitored throughout and for 2-4 hours after completion of the challenge.

If the challenge is successful, patients are instructed to ingest 1-3 servings of foods containing milk every day:

• Store-bought baked products (cookies, breads, bagels) with egg/milk listed as the 3rd ingredient or further down the list of ingredients.
• Home-baked products that have 1 egg (or 1 cup milk) per 1 cup of flour or 1-2 eggs (or 1 cup milk) per batch of a recipe (yield 6 servings). If you offer home baked products, feed 1 serving at a time with at least 2 hours between servings.
• Avoid products that do not qualify as baked egg: french toast, scrambled eggs, custard, etc.

There is a special note at the end indicating that, at least in one study, up to 8% of kids who passed a peanut challenge can have a recurrence of the allergy. This may be true of milk and egg as well, especially when these proteins are given in different forms (cheese vs. milk, for example). 

In our case, we've found our son can tolerate virtually any type of baked milk without a problem, baked butter in most instances, and very little baked cheese. This probably makes sense, as the amount of milk protein in cheese is proportionally higher than in liquid milk (which is only about 3% protein). But, the takeaway message is that you do have to be prepared for reactions as you work through this process.

At the very beginning of this article (Table 10:2), there's a note about how often food challenges for milk should be done. I was extremely surprised to see that the recommendation is to test every 12 months, barring history of an anaphylactic episode in that calendar year. By that measure, my son should have been tested for baked milk every year, starting after about age 8 (his last anaphylactic reaction to milk that I remember was around first grade). 

It's a shame that we waited until his late teen years to pursue this. It may not have happened even then, if our allergist's practice had not added a new doctor who had participated in the oral tolerance trial research. I'm heartsick that my son has been so restricted all through his teen years when a simple food challenge might have opened up so many more doors. 

SAFETY NOTE: please remember that I am talking about introducing baked milk only AFTER a child has passed an oral food challenge supervised by an allergist. This is NOT a do-it-yourself project.

That said, I more than encourage any of you with grade-school-age kids to pursue this and press your allergist hard for challenges. Show them the chart. Show them the protocol. There's a brave new world out there! 

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Food Allergy Cross Contamination: In the Trenches

I want to write a quick follow up to the article about the FARE survey and food allergy thresholds. I assumed people knew there are unlabeled allergens in our food. Based on the article comments, however, that doesn't appear to be common knowledge.

A study done several years back by Sicherer showed that 2% of the samples they tested contained some level of milk, egg, or peanut, even though the foods did not mention them on the label at all. The reality is that, if you use manufactured foods, you have most likely used a contaminated food at some point without knowing it.

Yes, this is technically out of compliance with FALCPA. BUT (and this is an important but), the food actually has to cause a problem before the FDA will take action. That means the allergen has to be at a threshold high enough to cause a reaction, a reaction has to occur, it has to be reported, and the FDA has to decide it's important enough on which to act. Since the process can break down at any of those points, the reality is that not many food recalls happen in the real world. (The FDA is so stressed and food inspections so infrequent that the chances of a company proactively being cited are slim to none.)

We have gotten burned by cross-contaminated foods so many times over the years that I assumed this was a common experience among FA parents. I've always assumed no food is 100% guaranteed to be safe, despite the label. (That's why we used to have our son try a little of everything before we went on camping trips.)

Scratch an "old timer" like me and you'll probably find a bunch of subjective coping strategies to try to avoid cross-contamination in foods. Not all of them probably make total sense. But, I'm going to note them here because they can at least add to the discussion about how very bad U.S. food labeling laws currently are.

1. The Liquid, Creamy, Sticky Rule.

Precautionary labels ("may contain", "made in a facility", made on a shared line") are completely voluntary on the part of manufacturers. There's no consistency at all to how they're used, or whether they're used. While I don't ignore them if they're there, I also try to think beyond them and consider the product being made:

Manufactured items that start out as creams or sticky dough are more likely to be contaminated. 

Over the years, we've had two really memorable incidences of reactions from cross-contamination. One involved a sticky candy (where the QA director told me the peanut dust "hangs in the air in the factory) and the other involved a small cookie manufacturer. These experiences have caused me to be very nervous about sticky.

2. Shared Product Lines. 

Sharing a manufacturing line is not always a big deal. After all, most of the small manufacturers in our country essentially rent time on manufacturing equipment. Even many large companies shift manufacturing operations, depending on open capacity.

However, there's sometimes an issue when a company carries two brands that are manufactured on shared equipment, where one of the brands contains an allergen. Examples of this would include almond and soy milks, different flavors of soups, or milk chocolate and dark chocolate. Because the products are similar, the companies will often run one manufacturing process in the morning, and the second manufacturing process in the afternoon. While all companies give lip service to "good manufacturing practices" and clean lines, the reality may be that the new batch is poured into the line after not-good-enough cleaning.

3. Small Companies.

When my son was little, we were excited to find a wholesome cookie that listed safe ingredients for him. However, I also noticed they carried a peanut variety so I called the company. The person I talked with assured me that the lines were thoroughly cleaned between batches and there would be no issue.

There was. My son suffered a pretty dramatic reaction that time. It made me extremely wary of small companies, both because the controls on information can be so poor and because of the issue I mentioned before: they tend to rent time on lines and may cut corners on cleaning.

I see a lot of folks who complain about the labeling practices of various large manufacturers. However, there's simply less likelihood of issues with larger manufacturers because they do not switch lines as often. National brands have enough business to run the same manufacturing batches over and over. The less switching, the less risk.

4. Country of origin.

This one's always a bit of a game because it can be difficult to tell what's really going on in any country. However, consumers protections tend to go hand in hand with economic development.

I am leery of products manufactured in China or Mexico. I trust products manufactured in Canada much more than US-made items. We do use many canned imports, but since many of these products are likely processed at a dedicated facility (i.e., coconut milk), the risk seems minimal. Others I know won't use any products processed outside the U.S.

One important warning: European chocolates have an entirely different labeling standard that U.S. chocolates. We completely avoid these and I highly recommend you do as well.

I'm sure there are other useful rules (and if you'd like to share yours, please add them in the comments). It's a shame we need these at all. But, once bitten, twice shy as they say. Hopefully my rules will help someone in the future to avoid the bite of a reaction from poorly-labeled food.


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How Much of a Food Allergen is Too Much?

There's a new survey the FARE people would like you to take. It's about food allergy thresholds: the minimum amount of a allergenic protein that should be allowed in a manufactured food without cautionary or overt labeling.

Most of the questions are designed to gauge general literacy about labeling laws. However, there was a question at the very end that gave me pause:

"Would you purchase a food that contains the allergen(s) you are avoiding if you could be assured that the amount of that allergen present in the food is only capable of triggering a mild allergic reaction, such as tingly lips or an itchy throat?"

The wording of the question carries a good bit of emotional baggage. Many of us know the stories of kids who died after determining a food was safe because they touched it to their tongue and didn't feel the tingle. It's a terrible and very dangerous way to gauge the allergic content of a food.

So why was it asked in this way? I have a (cynical) theory about it.

Across the table from FARE in these hearings will be the food industry. Anything that adds expense or time to the manufacturing process is going to make these people very, very nervous. If the law suddenly requires them to guarantee a maximum amount of allergen, it introduces a whole new level of product liability. After all, if they say a food contains <1 mg of a protein and a family of a child who has suffered a reaction can prove otherwise, they're suddenly on the hook legally. (If you remember the story of Joshua Ramirez, you know there are basically no legal protections for allergic consumers at all right now, even when foods are contaminated and unlabeled.)

So what's the poor, put-upon food industry to do to stop this from happening? "Hey! Let's just prove that food-allergic individuals don't really want/won't really use this kind of labeling anyway!" 

It's probably true that the vast majority of allergic people will use this new labeling to eliminate foods from their diet (including foods they or their child have successfully been eating). Most people have no clue what their or their child's threshold is for an allergen. Plus, we know thresholds can change with time, and with other environmental factors like pollen load, puberty, exercise or illness. Given all that, it can seem like a crap shoot to determine a "safe" level of an allergen.

The problem is that the food industry may use "no safe level" type comments we make in this survey and elsewhere to argue that the food-allergy community is unreasonably fearful and that labeling foods more clearly would actually cause harm: harm to consumers (eliminating foods they're currently eating successfully) and harm to the industry (lost business from fearful allergic consumers, lost money/time to implement the new rules). If they can show people are unlikely to use the new information and that there's actual harm in providing it, it will be easier to kill.

My guess is that initial discussions have already occurred between FARE and the food manufacturer lobbyists, and that food lobbyists may have influenced the (emotionally loaded) wording of the survey. From what I've seen in on-line discussions about the survey, some people are leaving outraged comments...which will likely delight the food lobbyists, as it's "evidence" the new rules are really not needed or wanted by food-allergic individuals.

All I'm asking is that you not overreact as you take the survey. Consider whether the knowledge about the quantifiable allergenic content of a food (imperfect though it may be) would be helpful. Don't get caught up in the emotions of the badly-worded question, but read it at face value: would you purchase a food...if you could be assured that the amount of that allergen present in the food is only capable of triggering a mild allergic reaction. Of course you would. I would too...if I were totally certain the reaction would be limited.

This legislation has the potential to help everyone in the food community. Quantifying allergen levels will suddenly expose the habitually-contaminated foods our children have been eating. Whether you choose to continue with those foods, or eliminate them, is up to you. More important, though, quantifying allergen levels gives us legal protections we don't have today. Don't lose sight of that objective because of a badly-worded question.

Any other theories on why this survey question was so weird? Add them to the comments please! 


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