CSPI Sesame Petition filed!!!

[LinksEtc]

allergists are willing to tell us "Avoid, Avoid, Avoid" but then when I approach them about labeling issues they tell me they either don't discuss them with patients or patients don't come to them with the concerns and it makes me wonder, you know?  It took us three tries to find an allergist that wasn't casual about the idea of anaphylaxis, they had this notion that if you have the epi you'll be fine but I kept saying "I don't wan't my child to react in the first place." 

Just rereading this part.  Sigh.

[lakeswimr]

allergists are willing to tell us "Avoid, Avoid, Avoid" but then when I approach them about labeling issues they tell me they either don't discuss them with patients or patients don't come to them with the concerns and it makes me wonder, you know?  It took us three tries to find an allergist that wasn't casual about the idea of anaphylaxis, they had this notion that if you have the epi you'll be fine but I kept saying "I don't wan't my child to react in the first place." 

Just rereading this part.  Sigh.

Allergists are probably not trained in label reading.  I think being an expert in food allergies in terms of diagnosing and anaphylaxis management is the main thing most do.  I think most parents of food allergic children end up being more expert in everyday food allergic life, which is not a criticism about allergists.  It is just natural.

I do think all allergists and food allergy organizations should make it VERY clear that if you deal with non-top 8 you MUST contact companies to be sure the food doesn't contain your allergen or you can't know.  They should make it very clear that you can not tell just by label reading alone.  That wasn't made clear to me and my son had multiple reactions.  I learned that the hard way.

[lakeswimr]

Please feel free to quote me.  To give you more information about my son's reactions, one drop of a soy sauce caused his lips to swell big and eye swelling and hives and vomiting.  One corn chip that was about 1/4 cm by 1/2 cm caused repetitive vomiting, stomach pain, and hives.  I did not use the epi pen either time in part because according to the label, both foods should have been safe.  Neither one had 'spice' or 'natural flavor' or any ambiguous words on the ingredient list.  I called both companies and they both said that they didn't know sesame was an allergen, did not treat it as an allergen or clean for it and that there was definitely sesame in non-sesame foods.  For me it isn't just about getting sesame labeled but also about getting companies to understand that sesame is even an allergen.  I know labeling laws don't cover cross contamination but companies do actively try to avoid cross contamination with the top 8.

I do think the FDA could be considered right that if you do this for sesame, what is to stop having to do it for all foods.  And it should be done for all foods. People can be allergic to any food and should not have to go through what I did and what my son did.  However, sesame is unique in a couple ways.  One way is the potency of sesame.  Sesame and other seeds are super potent, as potent as peanut. I first read about this, *I believe*, in Dr. Young's 'Peanut Allergy Answer Book'.  I believe it was in the first edition.  I am not sure that the second edition has this.  Apparently the 3rd edition does not from what I hear.  But I have also read about it elsewhere and am asking someone at KWFA about this.  If you do not have a source that talks about the potency issue, you might contact Dr. Young or, one of the allergists who signed the petition might provide a source.

The second thing unique about sesame is that it does seem to have the frequency.  It has long been called the 9th most common food allergen.  While food allergies vary from country to country in their frequency, Canada and the USA almost certainly should have very, very similar, if not identical lists.  Sesame is a top allergen in Canada.  I think Dr. Wood is another good source.  The allergists who signed the petition could cite the approximate % of their patients with FAs who deal with sesame.  We could also do an informal poll at KWFA on this topic.  While not scientific, this would give us a rough estimate of how prevalent sesame is.  Last I knew, KWFA had over 60,000 members so is a big pool poll.  I seriously question the results of the last prevalence study that was tagged onto that peanut study.  The results do not match what Dr. Woods says is true about his patients and it doesn't match was I seem to see at KWFA.  My understanding is that a real frequency study would be very costly.

I think if all seeds were grouped together there would be numbers over many in the top 8 and I think that is probably already true of sesame alone. 

If the only question is whether a food is an allergen then everything should be labeled as all foods can cause anaphylaxis.  I don't think that is what the point of this petition is, though. 

The last thing that might be special about sesame is the types of reactions it tends to cause.  Any food can cause anapylaxis but a study found that certain tree nuts are the most likely foods to cause the most severe of reactions.  I believe but am not certain that the same study listed seeds as a food most likely to cause very severe reactions. 

Other foods, such as egg, certainly can cause anapylaxis and must be treated very carefully, but GI issues like a stomach ache and vomiting are common reactions to egg-allergic children. 

I know this article was published a few years ago (the one about the foods most likely to cause the most serious of reactions).  If you cite that, it would be helpful.  Again, the allergists in the group might know this study.  There is someone at KWFA (well, several people) who are very good about saving such links and studies so if you want me to ask them, please let me know.

Please use anything I have written that might be helpful. 

@lakeswimr - You are so very right on all fronts - I remember calling companies about my daughter's oat allergy and having them say "isn't that gluten free?" and wondering how they could be in the business of food without getting the basics.  I was surprised that after a long period of time talking about the life and death impact of knowing about the presence of a known allergen (they did not deny that sesame was an allergen), they wanted to imply that if FALCPA covered 90% of allergens for people, it would be some sort of slippery slope to cover more.  At one point Brian suggested a "seeds" label that would group sesame, mustard, etc. like the "tree nuts" classification which I was puzzled by but I think it was a signal that the conversation had veered into a question of prevalence.  They wanted data on how many people have sesame allergy but CSPI's representatives accurately (to me, anyway) stated that the only question should be "is this an allergen?" and if so, it needs to be regulated through labeling and to come up on an existing inspection framework.  Potency was one of our big talking points and I think it has to continue to be one.  May I save what you wrote for the next time I talk with CSPI?  Thank you so much for sharing.

[lakeswimr]

Links, I had similar experiences.  People thought I was crazy when I tried to explain that label reading alone wasn't enough.  They would show me new foods and ask if they were safe and I"d try to explain and they would get that look.  We had issues with family not believing or understanding me but that is better now. We had many teachers and social groups not understand.  Other parents didn't understand.  It was very difficult.  If even some allergists don't know that sesame doesn't have to be listed on food labels and the only way to know if a food has sesame in it or not is to contact companies (and that even then, many companies will refuse to give out any info), how could the average person?

i'm sorry you had such a rough time. 

IMO sesame is one of the most difficult allergens to avoid.  DS has had many other FAs and none have been nearly as difficult to avoid as sesame. 

[LinksEtc]

i'm sorry you had such a rough time. 

You were one of the first sesame moms that I met online  .... it was always nice to have somebody to commiserate with ... you "got" the bad-labeling issues, understood them.

[lakeswimr]

i'm sorry you had such a rough time. 

You were one of the first sesame moms that I met online  .... it was always nice to have somebody to commiserate with ... you "got" the bad-labeling issues, understood them.

Yes, ditto.  You were the first other person who really got what I was saying and had the same experiences.   

[lakeswimr]

Homa and Links,
I just send you both a message.  Please check it and reply.  Thank!

[hsw24]

Got it! 

[LinksEtc]

I'm sitting here laughing by myself ... I figure why not share ...



Homa's
https://ohmahdeehness.wordpress.com/2015/05/18/lobbying-for-sesame-labeling-in-washington-d-c/

Finally, I got the feeling that the pending response to the Citizen Petition wasn't what it promised with the term "response."

made me think of this ...



Re: If you were an allergy researcher ...

"Science." You keep using that word. I do not think it means what you think it means.

https://www.sciencebasedmedicine.org/science-you-keep-using-that-word-i-do-not-think-it-means-what-you-think-it-means/

[CMdeux]

Man, I love Dave Gorski.   

{ahem}

Carry on.

[LinksEtc]

I'm going to speak in general terms ... not about any specific org ...

with this on my mind
Re: Docs helping patients to surf the internet

My opinion (which may or may not be right) is that patient orgs get their legitimacy from 2 primary sources:
1) Medical expert backing (medical boards, medical experts verifying org info).
2) Meeting patient needs.


So many top allergists backed the CSPI petition ... so many top allergy experts think that sesame should be labeled in the USA.

Patient need - of course sesame labeling is a huge unmet patient need.

Now an argument could be made by an org that their resources might be better spent on things like research ... they may legitimately feel that is where they will be able to help the most patients.  However, there is a difference between not making sesame labeling a top priority & not lifting a finger to help ... not even sending an email to members informing of the CSPI petition ... not writing a short statement of support (that does not take many resources but shows that they are on our side, it shows intent to support us.)

BTW, these are my own thoughts ... not Homa's ... just my own as I wonder what the orgs will do.

In fact, if Homa or leaders here or my Yoda or CSPI think writing these thoughts causes more harm than good, then I will delete them.



Please don't quote in case I am asked to delete.

[ninjaroll]

Was there a threshold element requiring disclosure in any part of the proposal? Refined oil? At times I get the sense that manufacturers are circling FALCPA with an eye on avoiding recalls through establishing threshold levels after the fact, or mounting challenges to transparency by reserving discretionary power of disclosure on heavily shared lines where cross contact is nearly an undisclosed ingredient.

[LinksEtc]

Was there a threshold element requiring disclosure in any part of the proposal? Refined oil? At times I get the sense that manufacturers are circling FALCPA with an eye on avoiding recalls through establishing threshold levels after the fact, or mounting challenges to transparency by reserving discretionary power of disclosure on heavily shared lines where cross contact is nearly an undisclosed ingredient.

The petition is asking for sesame to be labeled in a way similar to the major food allergens so, for example, no hiding in flavors, must use word "sesame" on labels, use good manufacturing practices, etc.

Thresholds & advisory labeling are not decided for major food allergens, so also not an issue concerning this sesame petition.

For manufacturers, it makes sense that many would not want mandatory sesame labeling b/c that brings issues of $$$, liability, & accountability.  That might explain why a company like GM (in my opinion) voluntarily labels for sesame yet backed the FARRP regulations comment advocating against currently mandating the labeling of sesame.

[hsw24]

I think you've distilled the situation pretty well, Links - I think that looking at the way groups have power is useful because it is almost trying to force people to agree on a given issue instead of letting them all have their own take.  As if the powers that be want people to hone in on a party line - the question is why? 

Sesame oil was discussed at the meeting - the FDA folks asked if sesame oil was like peanut oil in that (in theory) it would be refined to the point of not having the protein.  I think they wanted to know if we were asking that sesame oil be labeled as well but not in a threshold sense, just about the binary proposition of it being allergic (or not). 

I have had a killer week - I really want to sit down and, post meeting, go through FALCPA and the CFRs, etc. and see if anything jumps out at me.  I also want to follow up on my email to FARE, they were busy with their conference this past weekend so maybe I'll email them Monday if I haven't heard back by then.  I have a name of a contact for KFA and need to reach out to them.  I didn't get a chance to reach out to FAACT yet.  I'm not doing any of this in any special capacity, just kind of investigative to see if they have statements about this as it progresses.  Just like you all, I want to help whatever way I can.  Even when the original petition was filed by CSPI I expected the kind of sharing online that would generate support from the major organizations but it didn't ripple much so I hoped that actually going there and "reporting" on the experience might garner support but my wordiness probably caused people's eyes to glaze over!     

 

[lakeswimr]

I hope that whatever happens, companies will not that cold pressed sesame oil (the type use very commonly in Asian foods and salad dressings-the main type of sesame oil used in this country) has its proteins so would need to be declared.

Do companies really use highly refined sesame oil?  I haven't ever seen that for sale in any store anywhere.