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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

#141

Post by andrewchilds »

legitster wrote: post #140

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…

In my experience epipens and generics are easy to come by, and as a parent that has given epipens to a kid, passed out and deep in anaphylactic shock, and hearing ER nurses casually talk to each other about how many epipens they've given to kids that didn't make it, I think you might feel differently if you lived through that first-hand.

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

#142

Post by andrewchilds »

jwstanly wrote: post #29

Exciting to see FDA approval here. Hopefully next is FDA approval for programs like TIP ( https://foodallergyinstitute.com/food-allergy-treatment/ ). I'm a TIP grad, its life changing to be cured versus still avoiding your allergens and only having reduced anaphylaxis risk.

If TIP does work as well as the Food Allergy Institute claims, it should be subjected to a double-blind randomized clinical trial that surfaces the risks and benefits, and then practiced across the US. I'd truly love to see that happen. Until then, I'm deeply skeptical, even with testimonials like yours.

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

#143

Post by mrgoldenbrown »

cpuguy83 wrote: post #136
mlrtime wrote: post #130

Earlier quoted context omitted.

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 it…

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.

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

#144

Post by ender341341 »

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…

> 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)

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

#145

Post by cpuguy83 »

mrgoldenbrown wrote: post #143
cpuguy83 wrote: post #136

Earlier quoted context omitted.

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 it…

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.

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.

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

#146

Post by jwstanly »

andrewchilds wrote: post #142
jwstanly wrote: post #29

Exciting to see FDA approval here. Hopefully next is FDA approval for programs like TIP ( https://foodallergyinstitute.com/food-allergy-treatment/ ). I'm a TIP grad, its life changing to be cured versus still avoiding your allergens and only having reduced anaphylaxis risk.

If TIP does work as well as the Food Allergy Institute claims, it should be subjected to a double-blind randomized clinical trial that surfaces the risks and benefits, and then practiced across the US. I'd truly love to see that happen. Until then, I'm deeply skeptical, even with testimonials like yours.

The skepticism is understandable at least academically. From my understanding FAI isn't prioritizing clinical trials because 1) their individualized process with AI/ML work isn't aligned with classical physician/allergist work and 2) that same time could be spent to grow the program's operation and get more patients off the waitlist.

The individualized work is also why TIP doesn't scale-- even FAI itself hasn't opened offices outside of SoCal yet (east coast patients like myself have been begging internally for years for them to open locations nationwide).

Everyone would love to see FAI be more transparent, but just because they aren't doesn't mean the program doesn't work. Arguing "its not clinically proven, therefore it's not legitimate" feels pedantic when there's thousands of us in remission.

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

#147

Post by cosmodisk »

Broken_Hippo wrote: post #88
cosmodisk wrote: post #67

Earlier quoted context omitted.

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).

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 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.

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

#148

Post by LUmBULtERA »

legitster wrote: post #140

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…

My son has a couple allergies. My anecdote (in the US): it was very easy to get EpiPens for him. Having decent insurance, it was also not expensive.

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

#149

Post by andrewchilds »

jwstanly wrote: post #146
andrewchilds wrote: post #142

Earlier quoted context omitted.

If TIP does work as well as the Food Allergy Institute claims, it should be subjected to a double-blind randomized clinical trial that surfaces the risks and benefits, and then practiced across the US. I'd truly love to see that happen. Until then, I'm deeply skeptical, even with testimonials like yours.

The skepticism is understandable at least academically. From my understanding FAI isn't prioritizing clinical trials because 1) their individualized process with AI/ML work isn't aligned with classical physician/allergist work and 2) that same time could be spent to grow the program's operation and get more patients off the waitlist. The individualized work is also why TIP doesn't scale-- even FAI itself hasn't opene…

You could also say that OIT "works", just from reading a couple success stories online. But the whole story is complicated. I know a family that spent enormous amounts of time and money on OIT, and ended up stopping due to a random anaphylactic reaction to a maintenance dose a few years in. I think it's perfectly reasonable to want to know what percentage of people have had a negative/mixed experience with TIP. If it's as safe and effective as they claim it is, that's truly incredible - and I'm glad to hear it worked for you! But I need real clinical trial data before I sign my kid up for it.

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

#150

Post by JaggedNZ »

spondylosaurus wrote: post #73
modeless wrote: post #46

Earlier quoted context omitted.

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.

> 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

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?
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