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FDA approves first medication to reduce allergic reactions to multiple foods

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Re: FDA approves first medication to reduce allergic reactions to multiple foods

#131

Post by pfannkuchen »

neomantra wrote: post #120
yosito wrote: post #42

Earlier quoted context omitted.

> 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…

> 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... w…

> 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.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#132

Post by nostrademons »

There's also oral immunotherapy, where you give children increasing amounts of peanut (or other food allergens) to desensitize their immune system. Initial studies showed it was effective in achieving desensitization in 71% of patients (vs. 2% of controls) and remission in 21% (vs. 2% of controls):

https://www.nih.gov/news-events/nih-research-matters/oral-im...

It's largely limited to young children (the immune system under age 5 is more resilient than it gets later), but for parents that are willing to front the fairly considerable expense and inconvenience up front, it does offer the prospect of actually outgrowing the peanut allergy and not suffering from it as an adult.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#133

Post by dahart »

k_process wrote: post #82
shwaj wrote: post #61

Earlier quoted context omitted.

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

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.

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

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#134

Post by twunde »

cnity wrote: post #97
Broken_Hippo wrote: post #88

Earlier quoted context omitted.

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…

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.

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.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#135

Post by deinonychus »

jawns wrote: post #105
spondylosaurus wrote: post #15

Earlier quoted context omitted.

Longtime Xolair patient here: as far as cost goes, there are copay programs that knock the price down to $5/mo, but the catch is that you have to be insured (via commercial health insurance, not Medicare/Medicaid) to qualify. A lot of drug manufacturers offer these programs: the bargain is essentially that they'll cover the brunt of your copay cost so long as your insurance company is still paying for the rest of it.…

I'm surprised that the commercial insurance policies would tolerate this kind of copay kickback, since it arguably induces patients to be less discriminating based on their own financial skin in the game. The federal government treats these as illegal kickbacks: https://oig.hhs.gov/documents/special-advisory-bulletins/878...

I’m on a similar expensive (per sticker price) medication. After insurance pays a few thousand, they leave me with a $6,000 bill. But I’m on the manufacturer’s discount plan so I actually only pay $5. However, my insurance still thinks I paid $6,000 out of pocket, which very quickly eats up my deductible for the year.

It feels wildly perverse. I’m incentivized to purchase this “expensive” medication once or twice and then the cost of all of my medical care the rest of the year is negligible.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#136

Post by cpuguy83 »

mlrtime wrote: post #130
cpuguy83 wrote: post #126

Earlier quoted context omitted.

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…

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.

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.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#137

Post by jwineinger »

el_benhameen wrote: post #13
gnicholas wrote: post #7

From what I read of this, it's very expensive (thousands/mo), requires at least monthly injections at a facility, has a risk of anaphylaxis (so the injections can't be done at home), doesn't eliminate the risk of allergic reactions, and has no off-ramp (so you have to take it forever). Not exactly a silver bullet... My first thought was that it could be good for kids, who are less good at checking for trace amounts o…

Right. But the selling point isn’t “start packing pb&js for lunch”, but rather “go to a restaurant for the first time” or “worry less about your kid’s life being at risk from a classmate’s snack”.

We did achieve this with OIT for peanut allergy. Once we reached bite-safe levels, our lives literally changed for the better. We didn't have to worry about interrogating anyone serving us food (restaurants, friends, family), and we could go to some places that were just never an option before where cross contamination is likely or even expected, like ice-cream parlors. There's still a protocol we have to follow every day though, so an actual cure is still a dream for us.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#138

Post by amluto »

HardlyCognizant wrote: post #125
lm28469 wrote: post #95

Earlier quoted context omitted.

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

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.

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...

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#139

Post by amluto »

thatguy27 wrote: post #81
kelnos wrote: post #77

Earlier quoted context omitted.

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 i…

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).

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.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#140

Post by legitster »

I had an interesting conversation with a doctor recently. They suggested that people have overreacted to the risk of anaphylactic shock. We automatically treat it as a life ending event, but I guess even if you go into shock it's a pretty long tail event that causes permanent damage.

All this to say its hard to even get an EpiPen now. People using it unnecessarily during any panic attack and ending up in the ER is a bigger risk than the allergy itself.

It might be fair to say these treatments would be just as much as a psychological treatment - you have millions of people living in constant fear that this could help.

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