Hacker News Reader

Comment by moregrist | Hacker News Reader

As a parent of a child with a severe sesame allergy, you clearly don’t understand food allergies and how severe they can be.

If my child ingests sesame, they go into anaphylactic shock and without an epipen administered in minutes they will die.

There are definitely questions of how to best inform consumers that have severe food allergies. But I’ve been really underwhelmed with the dialog here on this.

It would be lovely if HN could keep in mind that for some people, sesame is a life-threatening ingredient. And those people would also like to safely buy bread.

View on HN

From your perspective, has this shift reduced the number of options you’re comfortable feeding to your allergic child?

I guess what I’m asking is, was the previous situation (label indicating the mere possibility of cross-contamination) enough of a risk that you avoided those foods, before this labeling shift?

And has the availability changed post-regulation as far as brands or bakeries that lean in to being conscientious about this risk?

From my perspective, it’s been a mixed bag.

On the one hand, sesame is clearly listed on major brands so we can buy bread with more confidence. Before, there was always some hesitation when shopping with unknown brands. Even known brands can change formulations, which could make shopping feel very uncomfortable.

On the other hand, some brands have started intentionally adding sesame. That sucks. But it may also indicate that a real cross contamination risk has always existed.

It’s important to note that not all brands add sesame, and that not all store brands add sesame. So it hasn’t meaningfully reduced our choices. And I do hope that brands intentionally adding sesame will reconsider at some point.

> If my child ingests sesame, they go into anaphylactic shock and without an epipen administered in minutes they will die.

Please excuse my skepticism, I am asking this out of a genuine desire to become better informed: how can you possibly know this? Unless you happened to have an epi-pen handy the first time your kid ever ate a sesame seed, which seems unlikely, then if this were true would not your kid have died then and there?

I can’t answer for sesame, but my kid has an allergy to a specific nut, that we discovered after mum picked baby up after handling said nut, leaving bright red welts on their little body. No ingestion required.

Subsequently, immunology department, skin prick tests to identify the specific culprit, “risk of anaphylaxis” posters, and an Epipen - with risk factor based on the size of the reaction, in millimeters, to the skin prick test.

Thanks.

Yep: instead of a bunch of downvotes, that was exactly the right kind of response to your question. Those of us who don't have these kinds of allergies (or kids with them) would have no clue about this kind of thing, and that response summed it all up very well.

Was the nut cashew?

No, it was walnut and pecan (they are related, it turns out). Some other minor reactions but those were the big two.

Good question.

The idea that coming into contact with a seed could kill you seems insane and terrible. Yet where are all the people dying of this? Is the implication that our prevention is so good we are somehow avoiding it? I'm also skeptical.

I'm not denying that it exists, but common knowledge (you literally can't eat peanut butter at school) indicates it's so common. How could this be?

The solution is to stock epipens everywhere.

> Yet where are all the people dying of this?

Based on this metastudy titled Epidemiology of anaphylaxis in Europe, they found the prognosis was:

> Case fatality rates were noted in three studies at 0.000002%, 0.00009%, and 0.0001%.

That's among all cases of anaphylaxis, so the answer is "they are almost nonexistent". It's not even a rounding error. Something on the order of a few dozen people per year for a country the size of the UK and from what I can tell, most of those are due to administration of IV medication where the allergy was previously unknown and much more severe.

[1] https://onlinelibrary.wiley.com/doi/epdf/10.1111/all.12272

I think part of the confusion is that food anaphylaxis isn't automatic death sentence in all cases, but the risk is that it could be. I have a peanut allergy and carry an epipen. I've been exposed ~5 times in my life but it never was severe enough to deploy it, and instead took benadryl and closely monitored it with epipen in hand and 911 on speed dial. I also know people who eat their allergen occasionally because they just get hives and it's worth it as a treat, and I know people who had severe asthma in minutes after a cross-contamination and needed the epi.

It's just game theory. It's like asking how many metaphorical empty barrels do you want to add to your Russian roulette revolver before you are willing to risk it, the reward being basically "ordinary food". Oh and the risk can suddenly one day go from just causing hives to severe anaphylaxis at a much smaller dose.

Most people who learn of a sensitivity (I learned in elementary school after breaking out in hives from doing art involving peanut shells, the horror to think this is something schools just did!) just don't want to know that badly how dire their allergy is and assume it's life threatening, because it's not worth it to be cavalier.

With some allergies, they become more acute on subsequent exposures. Think first time you break out in welts, second time you have a hard time breathing, third time you die.

There are kits now with allergens that you can feed your kid to test for this kind of thing[0]. The idea is that you have them eat it in the parking lot of a hospital and see what happens.

[0]https://readysetfood.com/products/stage-1-2-bottle-mix-in

OK, but surely not everyone does this?

Here's the thing: if there really are kids out there who will drop dead within minutes of eating a sesame seed, surely some of them will discover this the hard way, i.e. by accidentally consuming a sesame seed and dying. But not once have I ever heard a news report about a kid dying this way, and I can't find any data on how many people die this way. I also can't imagine any reliable way that one could possibly learn that your allergy is so severe that a sesame seed will kill you without having at least some people actually die.

All this leads me to suspect that the belief that sesame seeds are potentially deadly in small doses might not be solidly grounded in facts.

Actually, we can estimate odds even with zero deaths.

The thing is regardless of the trigger anaphylaxis is anaphylaxis. The severity differs, the mechanism is the same. We can see the distribution of reactions and estimate the number that will be lethal even if we have no examples.

(And I rather suspect that a fair number of the lethal cases don't get diagnosed. I don't believe autopsy will reveal what set it off unless the contaminant is obvious.)

It’s usually the second exposure that causes the reaction.

There are plenty of anecdotes of close calls. EMTs carry epipens for this reason. And occasionally it’s tragic when one is not administered in time.

But ingestion is not the only way to learn that you have a severe allergy. Skin contact with the allergen with usually result in bad hives. When this happens with a child, it’s scary and tends to result in an appointment with an allergist, who can assess the severity with skin tests and blood draws.

I had an epipen on-hand when my child ate hummus the second time, and started going into anaphylactic shock. They had had a bad hive reaction to spilled milk, so we had already seen the allergist for milk allergies, which were severe enough to warrant an epipen.

It was a terrifying event, and I am very thankful that we had the epipen and that my child did not have a second wave reaction.

Thanks. I'm glad your kid is OK, and sorry that you need to deal with the added stress.

Still it leaves me wondering where is the data on the kids who have this happen to them whose parents don't happen to have an epi-pen on hand. You'd think there would be some deaths, and you'd think someone would be keeping track of them, but I can't find the numbers on this anywhere. Seems weird.

No, you don't have a right to buy bread in your situation. Take responsibility, assume labels lie, and bake all the bread yourself.

If we’re starting going down this path, what if the flour also lie and mix in an unknown quantity of sesame? Should families have to devolve into living in a feudal pocket society?

I think it’s fair for the regulator to be hard on lying on food labels. That seems like a rather low bar for a functional modern society. As consumers, we can also ask companies to provide additional services. There’s nothing irresponsible or entitled in politely asking for accommodation from providers or empathy from peers.

And unless there’s an edit that I’m missing, the person you’re responding to explicitly expressed a desire rather than tried to claim a right.

I would argue that they have the _right_ to buy bread, but they also have the _responsibility_ to ensure that their child does not eat affected (or possibly-affected) bread.

These labels shift the responsibility. And that is a responsibility that the companies making bread just are not willing to take.

And how does this farce of a rule help you child? Not at all!

You think that somehow this will make sesame-free bread. Nope, that's too expensive. They responded to the FDA's garbage by throwing a pinch of sesame in. Apparently some manufacturers didn't manage to throw enough in, or perhaps the detect threshold isn't sensitive enough. Throw that pinch of sesame into enough bread and it might not be detected even though it's there.

If there was an adequate market for sesame-free bread you would already see it. Nothing is stopping a manufacturer from opening a sesame-free bread factory--that is, nothing but a lack of demand.

Honestly, the rule has been helpful to my family. We now clearly know whether a product contains sesame or not. Previously, it wasn't always listed, or had vague potential cross-contamination warnings, which are hard to parse.

So, in my eyes, it's not a farce of a rule at all.

> If there was an adequate market for sesame-free bread you would already see it. Nothing is stopping a manufacturer from opening a sesame-free bread factory--that is, nothing but a lack of demand.

Dude, chill. You must not read labels looking for sesame when you buy bread.

There are manufacturers that make sesame-free bread. I buy it regularly from normal supermarkets in the normal bread section.

If you have a deadly allergy a cross-contamination warning means don't eat it. They aren't hard to parse at all.

You got slightly clearer labels, a lot of people went from being able to eat it to not being able to eat it.

I will admit that I do not look at bread labels--all bread falls into the unpleasant reaction category for me.

Reply on news.ycombinator.com