[DoreenMichele]

It's a 16 to 20 week course of treatment and reduces risk of anaphylaxis for accidental exposure to food allergens. There is at least one other drug that is used to treat peanut allergies, but this treats multiple food allergies.

Given that anaphylaxis can be deadly and staff at food places can be sometimes less than reliable about food allergy concerns, I can see this being appealing to someone with severe food allergies who wants a more normal life.

It would be nice if we figured out what causes allergies and fixed it but, I mean, we may never fully solve that. For some people, "take injections for a few weeks and be able to go out with friends without stressing this will involve another life-threatening health event and trip to the ER" will be of adequate value to endure the course of treatment.

[yosito]

> staff at food places can be sometimes less than reliable about food allergy concerns

As someone with Celiac disease, who often eats at restaurants, this is a bit of an understatement. Even in restaurants where things are marked allergen free on the menu, it is often the case that staff will make mistakes. More often than not, staff aren't even informed about the basics of food, things like eggs and dairy being two separate foods, or that they can't just scrape some sauce off of a bun if they put it there by mistake, etc. If I had a life threatening allergy, I would never set foot in a restaurant. It's terrifying.

[neomantra]

> staff at food places can be sometimes less than reliable about food allergy concerns

In 2000, I was working at an NYC restaurant (Josie's on Third) -- it was a new non-dairy health-focused organic-everything restaurant. The waitstaff was trained in all the ingredients and many of the sources and were highly conscious of needs of our customers. We were tested on it a staff meal.

One day, two friends sat to dine... we brought bread and our non-dairy spread. Customer asked "what is this?" I replied, "it is red-pepper tahini, an alternative to butter". I take their order, tend to other tables and arranging beverages, when I come back around 5 minutes later the table is empty. I ask my manager "what happened?"

The lady had a severe sesame allergy and was rushed to the hospital -- *she did not know that tahini was sesame paste and I did not tell her*. I have no idea what happened to her and I think about this several times per year.

For the last 15+ years, I have been a hands-on operator of complex computer systems operator. This experience has absolutely shaped how I communicate with teams, how I look at how failures may happen, how to expect the unexpected, etc.

I now have a son with peanut allergies. It also influences how we dine. It is not easy and I'm glad there's out-of-band solutions like these drug therapies. We are not there yet, but might consider it.

[emeril]

I remember Josies... nice place back then

Definitely odd that a person with a severe sesame allergy didn't know about tahini - she can't even eat hummus

That said, I suppose decades back such foods were less mainstream and/or she was new to the allergy

[pfannkuchen]

> and I did not tell her

I don’t think you should feel too bad about this. Having a severe sesame allergy and not knowing what tahini is and also not asking about sesame in dishes is quite reckless IMO. They were bound to accidentally eat something with tahini in it eventually.

[neomantra]

Thanks for that :) I don’t beat myself up — I did then! — but I do use it for reflection.

[ender341341]

> The lady had a severe sesame allergy and was rushed to the hospital -- she did not know that tahini was sesame paste and I did not tell her.

I saw similar with corn, my cat was having a severe reaction to something and vet suggested getting food without corn in it, then gave me a list of like 20 different names for ingredients manufacturers use to hide corn.

(though with your's it's not we're trying to hide/obfuscate ingredients)

[cpuguy83]

I am so sorry. I was a server... 20 years ago holy crap... I've been that server. They asked if something was safe for celiac. I had no idea, nobody else did either.

Today, my partner is a severe celiac. Any traces of gluten takes them out for at least 2 weeks. Any hesitation from a restaurant from a restaurant and we are gone.

I think that person ended up ordering. Of course literally nothing in that restaurant was safe for celiac if for nothing else than cross contamination.

So sorry.

[mlrtime]

TBH I don't think a server should be responsible to know all these things.

They should be able to answer specific questions or find out from the Chef. Ultimately it's up to the customer to understand the risks of eating out.

[cpuguy83]

Completely disagree. For the restaurant in question it is a major national chain, so indeed it is harder for the server to have this knowledge on every dish, but at least a book of allergens... really the company should have this available in a friendly manner online.

But even then, the server should absolutely know (and therefore be trained on) major allergens in the kitchen because its not just the food, its how its prepared.

20 years ago I didn't know, I didn't know that I ought to know. I didn't know that I could have caused that person significant harm. I was a teenager. But my managers absolutely should have known and not put me in that position where I didn't know something so fundamental to food service. We were trained on other things.

[mrgoldenbrown]

The staff should be able to answer questions about what ingredients are used in the kitchen and in specific dishes. but they shouldn't be responsible for answering the question as you posed it : "is this safe for someone with celiac" ? Safety is up to you to decide, as only the customer knows how sensitive they are and what the reaction will be.

[cpuguy83]

Celiac is a specific condition, not even an allergy. If someone has celiac, they cannot have gluten without bad consequences. Being able to serve someone with celiac means the kitchen has deliberately chosen to do so and have procedures in place for doing it. Things like changing out gloves, cleaning surfaces or having dedicated space. This also means knowing what cannot be made safe, which often is things like french fries because friers tend to be shared with gluten products.

[cosmodisk]

Our daughter is allergic to a few things,nuts being one of them. When we ask for food information at restaurants, often staff have no clue. We had cases where they couldn't confirm for sure even after checking with the kitchen( we walked away).

[Broken_Hippo]

I'm sorry, but why would you expect someone to know all of the food ingredients on the menu - even if they work there - if they don't personally prepare all of the foods? Heck, in the US, most of the places aren't even paying their staff a decent wage.

Servers go by the menu as well. It isn't like there is a list most places.

If the owners cared about your allergies, they'd make sure their staff could find out easily. Blame the folks that own the place, not the servers.

[cnity]

I didn't read GP as blaming servers so much as demonstrating what is effectively systemic ignorance in the restaurant industry. The inability to 100% confirm ingredients is highlighted as not only being due to servers not knowing the exact contents of all meals (which is understandable), but also the fact that those who prepare and cook the meals as also being uncertain.

[windowsrookie]

The problem is a large portion of the food in restaurants is not prepared in the restaurant. If you order a burger meal, yes the meat is cooked on the grill at the restaurant, but the buns, and any sauce were likely made somewhere else. They might purchase the meat pre-seasoned from the food distributor. And the french fries likely even have a seasoning pre-applied to them before they are delivered to the restaurant.

[ebiester]

But that makes it easier for the restaurant!

You have the ingredients on a package to check. The head chef can do it while constructing the recipe. And you can explicitly order gluten free substitutes that stay in the freezer until needed.

[ifyoubuildit]

Does that make it acceptable? Its like if a dev blames a library for a bug in their product that they are charging money for.

[twunde]

There are some places that are much better about this than others. I remember in Europe several of the restaurants had _books_ containing all the potential ingredients and cross-allergens for each dish. I distinctly remember Wagamama's in London pulling one out and double-checking it due to my spouse's eggplant allergy. Sadly it removed most of the menu that we were excited to eat, but it was damn impressive.

[watwut]

In many countries, the restaurants are expected to know allergens by law. Each food on the menu is supposed to have list of allergens available. Usually they are available right there in the menu, you do not even have to ask.

[vjjsejj]

> Heck, in the US, most of the places aren't even paying their staff a decent wage.

Getting > 20% of the total revenue in a restaurant seems like a pretty good deal though. I doubt most servers would prefer getting the 2-3x Federal minimum wage and no tips.

And in some states like CA, WA, NYC it’s a (relatively) very well paid job.

[cosmodisk]

I don't expect people to know every single item on the menu and all the ingredients they are made of. What I do expect is if a meal is made in a restaurant, the restaurant ( as a whole) to know whether it contains milk, soya,nuts, bananas, whatever. We have fairly strict regulations when it comes to this, but how they are actually applied is a completely different thing.

[beacon294]

Celiac is life threatening as far as I know.

[yosito]

Celiac disease is life threatening like smoking is life threatening. Yes, it can kill you, if you regularly ignore the harm you are doing to your body and continue indulging. But someone with Celiac Disease isn't going to go into anaphylactic shock and die on the spot.

[moneywoes]

hi fellow celiac

any upcoming new celiac tech you find exciting?

[teen]

maybe you're just allergic to glyphosate, not wheat. glyphosate is in pretty much everything now

[shwaj]

This might be true for people in general, but people who have been diagnosed with Celiac disease are definitely allergic to wheat.

[k_process]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945755/ "Glyphosate, pathways to modern diseases II: Celiac sprue and gluten intolerance"

Here, we propose that glyphosate is the most important causal factor in this [celiac disease and gluten intolerance] epidemic.

[dahart]

Don’t forget this awesome quote: “However, a recent paper (Samsel & Seneff, 2013), argued that glyphosate may be a key contributor to the obesity epidemic and the autism epidemic in the United States, as well as to several other diseases and conditions, such as Alzheimer's disease, Parkinson's disease, infertility, depression, and cancer.”

It’s causing all the bad things? That would be amazing if true, unfortunately it sounds unlikely (chiropractic comes to mind) and the rest of the science world doesn’t believe these authors.

If the graphs in the paper seem compelling, make sure to spend some time here: https://www.tylervigen.com/spurious-correlations

[refurb]

Did you read the paper? My guess is no.

Classic HN, references a paper as if the conclusions are fact and all references are equivalent.

This is a paper where the authors did no experiments of their own, just put forth a hypotheses.

The lead author is an “independent scientist”.

Suffice to say I’d be very suspect of the conclusions drawn.

[bigbillheck]

> The lead author is an “independent scientist”.

The other one: https://en.wikipedia.org/wiki/Stephanie_Seneff

[lm28469]

Not wheat, gluten

edit: for the downvotes, https://en.wikipedia.org/wiki/Coeliac_disease

> where individuals develop intolerance to gluten

> Coeliac disease is caused by a reaction to gluten

> While the disease is caused by a permanent intolerance to gluten proteins,[10] it is distinct from wheat allergy, which is much more rare

[HardlyCognizant]

Not even gluten, one of the peptides it is composed of. Prolamins like gliadin, horadin, etc. depending on the grain. This is why gluten denaturing proteases aren't sufficient to protect a celiac, and thus some technically GF foods aren't necessarily safe.

[amluto]

My impression has been that the real problems are:

1. The enzymes are not yet well tested.

2. Most enzymes one might purchase are subject to the extremely weak US supplement labeling laws and thus cannot be trusted.

In any case, there’s an enzyme combo working its way through the FDA process right now:

https://celiac.org/about-the-foundation/featured-news/2021/0...

[yosito]

Interesting! Tell me more! Do you have any sources where I can read more about this?

[yosito]

I have celiac disease. When I eat foods that contain gluten or a similar protein, avenin, it triggers an immune reaction which causes inflammation and damage in my intestines. It's not an allergy, it's not a wheat allergy, it's not a glyphosate allergy. You may keep your uninformed opinion.

[gnicholas]

> It's a 16 to 20 week course of treatment

The study refers to checking patients after this many weeks, but my understanding is that you're supposed to keep taking it forever. From NPR:

> The medication is not intended for use during an allergic reaction. Instead, it is designed to be taken repeatedly every few weeks to help reduce the risk of reactions over time.

1: https://www.npr.org/2024/02/18/1232304606/fda-approval-food-...

[b112]

The medication is not intended for use during an allergic reaction. Instead, it is designed to be taken repeatedly every few weeks to help reduce the risk of reactions

Deep in the bowels of corporate HQ, at a board meeting:

"And the best part is, if people ever stop using it, their allergic reactions become more severe than before they started!"

[DoreenMichele]

9

Duration of Therapy

The appropriate duration of therapy for IgE-mediated food allergy has not been evaluated.

Periodically reassess the need for continued therapy.

https://www.gene.com/download/pdf/xolair_prescribing.pdf

[kelnos]

So that's still not terrible, really.

I've been getting allergy immunotherapy for the past 3.5 years (not for food allergies, for stuff like cat, dog, grass, dust mites, etc.), and I have to go for the shots once a month. It's honestly not that big a deal. I only have another 1.5 years until my treatment is over, but if I had to do it for the rest of my life, it wouldn't be the worst thing, given the benefits.

This is of course assuming there aren't any bad reactions to this medicine... didn't read enough of the article or beyond to get that info.

[thatguy27]

Hi,

Would you mind telling me what immunotherapy you get, specifically for cats? I'm currently on Grazax for grasses etc. I would love to be able to get a cat, but I am quite allergic and get flu-like symptoms after a while. (Also, my blood tests don't show that I'm allergic to cats, so that complicates things).

[amluto]

In the US, most clinics don’t make a point of showing the patient what the product is. They screen the patient (usually a skin test), prescribe either a single antigen formulation, a combination of antigens in different vials, or they mix up a custom vial for the patient, and they keep it in a fridge in the clinic. The antigens come from whatever provider the clinic buys them from.

[hhjinks]

Hypo-sensitization treatments for pollen last for ~3 years and have effects lasting years.

[modeless]

The study lasted 20 weeks, but I believe you have to continue the treatment indefinitely if you want the effects to continue. It's not a permanent fix, and a once or twice monthly injection for the rest of my life is not something I'd like to sign up for.

[kelnos]

I do non-food allergy immunotherapy once a month, and have been doing it for the past 3.5 years. I really don't mind going in that often, and the benefits are well worth it to me. I only have to go another 1.5 years before it's common to see diminishing returns for continuing longer, but if I had to do it for the rest of my life, that'd probably be ok.

[modeless]

I am doing the same and if it was for the rest of my life I wouldn't have started. The burden is just too high to justify it for my level of allergies. I'm kind of regretting it even though it did cure my allergies, I kept getting injection site reactions and having to go through up dosing repeatedly. It's a sunk cost now though.

[spondylosaurus]

> a once or twice monthly injection for the rest of my life is not something I'd like to sign up for.

I take this exact drug for not-even-life-threatening allergies and the hassle is really not that bad. It's certainly less annoying than suffering through ragweed season every year :P

[JaggedNZ]

I have mild asthma, a host of other "mild" (aka. non-life threating) seasonal allergies and oral antihistamines are becoming less effective as I get older. I will be talking to my doctor about this medication. I'm interested in your experience if you don't mind sharing more? Any improvements to contact allergies?

[spondylosaurus]

I'm not positive if I have any contact allergies, though I do have a lifelong tendency for eczema, which has improved a lot on Xolair.

For background: I actually went on Xolair to treat eczema, which is an off-label use, but my IgE antibodies were high enough thanks to 5000 environmental allergies (mold, pollen, dust, more dust...) that they got my insurance to approve it under standard criteria. I also have asthma, which is one of the things it's approved to treat, so that might be a good pathway to approval and a symptom you can reduce.

Prior to Xolair, my skin used to get so fucked-up and dry that my eyelids would crack and bleed and weep some kind of liquid. On more than one occasion I had strangers ask me if I had lupus because it looked like I had the characteristic butterfly rash. And I'd get miserable allergy symptoms whenever it was windy (which is often, since I live in a valley) or I was around environmental triggers (which is also often, since I'm allergic to pretty much everything that grows in this biome).

After being on Xolair, I have pretty much zero problems with eczema (although the TNF inhibitors I started taking for general autoimmune shit share some of the credit there) and my allergies are all but gone. It's wild. I actually forgot about how shitty I used to feel in windy weather until I looked outside, saw that it's windy today, and was like "Oh yeah, that used to mess me up...."

Dust doesn't fuck me up the way it used to; when I vacuum under the bed, I can feel something happening in my skin, like the sensation of breaking out in the mildest of sweats, but otherwise it doesn't bother me. My pollen tolerance is also significantly better—we actually started growing some pepper plants indoors, and it's the same thing where I can almost feel the pollen coming off them when I get really close, but I have to be within two feet to notice and it's not, like, unpleasant. More like a sixth sense.

My asthma might be a little better too, but it's hard to say. I've been able to exercise more easily than I ever could when I was a kid, although I was a pretty wimpy kid in the first place, lol.

So, long story short: I'd definitely recommend Xolair! Other than the requisite insurance hassle and having to spend a few hours every month getting my shots, zero complaints here. One of the best success stories I've heard is that my allergist had a patient who was a professional archeologist with terrible allergies, but after going on Xolair they were able to go on digs without issue.

Also, regarding oral antihistamines, have you tried any Rx drugs like hydroxyzine? My allergist put me on 35mg of that nightly and it knocks down anything the Xolair wasn't already doing. My partner also takes it and it's helped their significantly-less-severe allergies as well, plus zafirlukast for polyp-spurred inflammation.

[JaggedNZ]

Thanks so much, sounds like we have quite similar allergies and symptoms, I can really relate to having weepy messed up eyes and comments from strangers! Funnily enough, I think I should hopefully qualify for it with my Asthma + IgE levels, that it could help my eczema would be a big bonus.

I tried allergy immunotherapy (aka. "allergy shots") but it was very rough and it aggravated blood pressure issues and gave me joint pains, so I opted to discontinue after the second attempt.

On hydroxyzine, I've taken cetirizine (2nd gen, metabolite of hydroxyzine) in the past. 1st gen antihistamines usually knock me out. I'm now on Fexofenadine (Allegra, Telfast) which is mostly covered by my insurance and works pretty good still.

One crazy thing for eczema sufferers, if you get bad eczema on neck and arms during summer don't assume you have a heat rash, patch test your sun screen. I now use zinc based sun screen after a dermatologist patch test identified I was allergic too Oxybenzone's. Never has a clue and I live in a country with very high UV levels.

[looping8]

We can hope it's not for the rest of one's life but only until a better solution is found. For people with deadly allergies, a few years of injections might not be too big of a price, I think.

[bennyg]

Yeah this is one of those perspective things. I’m on a once-a-month regimen of eyeball injections to stave off macular degeneration. I’d trade it in a heartbeat for allergy-reducing injection. But even my case feels “routine” now.

[modeless]

I am not optimistic. The pace of progress in the field is very slow. Barring an AGI-induced revolution in medicine (not out of the question) I think the chances of curing common allergies in my lifetime are not super high.

[MrYellowP]

Why would any of the pharma companies out there want to invent a permanent cure, when there's far more money to be made with a cure that is not permanent? Makes no sense.

A one time customer isn't lucrative.

[twothamendment]

My wife has been on Xolair for about a year, monthly injections (more would be nice, but that is all we can get from insurance). In her case, MCAS (Mast cell activation disorder) her body reacts to everything as if it were a food allergy - even though she isn't allergic to these foods.

They don't know the root cause for MCAS, so they sure don't have a cure or barely a clue it seems.

She lives a very restricted lifestyle, can't go in public places were people have perfume/strong smelling products on, can eat about 25 different ingredients (including a few spices), so eating out is not an option. A ripe banana in the room is enough to set her off and the impact is usually 2-3 days.

Xolair had allowed her to feel like a normal(ish) person - as long as all of the restrictions are followed.

Yup, it sucks to have to inject her monthly to have something that resembles normal and is in no way a cure - but I'll take it. Treating symptoms is far better than treating nothing. But a cure? If shell out quite a bit for that!

Copy paste for those wondering what MCAS does to a person. "MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea."

[lotsofpulp]

>Why would any of the pharma companies out there want to invent a permanent cure, when there's far more money to be made with a cure that is not permanent? Makes no sense

Then why are there permanent cures credited to pharmaceutical companies such as

https://en.wikipedia.org/wiki/Sofosbuvir

[Broken_Hippo]

First things first, pharma companies are OK with cures. Cures bring money as well, and some cures bring them patient trust.

Pharma companies aren't the only factor here either. Insurance companies, patients, and governments are definitely invested in cures. Preventative measures are OK with these groups as well - vaccines are one of these. Not all research is by big pharma either.

You are assuming other things bring magic profit when they don't do that as efficiently as you think.

Curing one disease doesn't cure them all, and there would still be profit to be made off of your other sicknesses. Probably especially those tied to lifestyle.

You are also assuming that we know how to cure the diseases we have treatments for. This is the real reason we don't have more cures - we know a good deal about the body, but there is a good deal we simply don't know.

It isn't that I think these folks are innocent - I have anger towards those exploiting sick folks to make obscene profits and the industry is greedy - but I don't buy your argument at all. It doesn't allow for the nuance that actual life has and only works if you don't look below the surface.

[Madmallard]

The heads of J&J and Pfizer would absolutely love it if their family members didn’t also get and die of illnesses like cancer and heart disease.

[DinaCoder99]

> It's not a permanent fix, and a once or twice monthly injection for the rest of my life is not something I'd like to sign up for.

Seems better than dying of anaphylaxis but what do I know.

[modeless]

The risk of dying from anaphylaxis is almost universally exaggerated. There is a lot of fearmongering about it, especially for parents.

The truth is, even for food allergic people, the risk of death is low compared to other causes. EpiPens are very effective. Also, anaphylaxis is a very temporary condition. If you do get anaphylaxis then after a very short recovery period there are zero long term effects to worry about.

It's questionable whether intensive and risky treatments are warranted in most cases (remember Xolair carries its own risk of anaphylaxis).

[Antipodes456]

Yes but that's not the full story... .It's true that the odds of dying from anaphylaxis are low, IF treated in time.

The sad thing is that the vast majority of all deaths from allergic reactions are preventable.

Things like not acting immediately and injecting Epipen in the first few minutes, not following up with a 2nd shot if no improvement in 15min. Having expired pens. Kids grow, and need larger pens. Teacher panics and uses pen upside down. Kids try foods as a teen or when they leave home as they "used to be allergic"

As the parent of an Parent of anaphylactic 7 year old - the fear is real. Low odds, but catastrophic outcome.

We are lucky that my partner is a nurse and we are knowledgable and manage places we go, but daycare, schools, birthday situations etc are a worry

*edited - typo

[washadjeffmad]

My friend's son went into anaphylaxis while out with his girlfriend, and even though she carried a spare pen, the needle bent when it hit a seam in his pants, rendering it unusable.

She called sobbing that she'd killed him, but someone had an expired pen, and he ended up okay after getting to the hospital. Still, you never know if it could be the one.

[HorizonXP]

I’m in that camp. My kids and I don’t have issues, but my wife does. We’ve had to de-train in Germany once and go to a hospital due to a reaction while on vacation. Last week in NYC, we bought food and were ensured that it didn’t have nuts. But we forgot to ask about sesame seeds/oil. No hospital this time, but she was unwell (vomiting) for the rest of the trip.

We are pretty vigilant. If her anaphylactic reactions were more severe (I.e. airway constricting) we would be much more strict. But this approval seems perfect for us, since it won’t change our routines, but means we’re not punished for accidents.

[ImHereToVote]

There are countries with significantly less allergies amongst children. The difference is so stark as to be visible at the country border level. This is well studied. For political reasons, I'm gonna let you search what those countries are for yourself.

[meindnoch]

Elaborate, please!

[mtlmtlmtlmtl]

Look up the hygiene hypothesis, I believe that's what they're referring to.

[wouldbecouldbe]

It would probably be a good idea to make it a recommendation to start giving allergy prone foods such as peanuts in small dosis to baby's so there is a higher chance for developing a tolerance.

[theNJR]

This is now the recommendation. Companies even make allergen packets to add to your baby’s breast milk / formula / early foods for gradual and systemic exposure.