I have anaphylaxis to basically the world. I am allergic to so many things that I require a special drink to ensure I meet dietary requirements.

I can only imagine your parents trying to feed you as a baby with this condition. How were you fed as an infant? Speciality formula or did your mum live a restricted diet so she could feed you? (I spent almost a year dairy, soy, egg and gluten free whilst breastfeeding which I bet is far easier to do now than it was when you were a baby!)

Well, I didn't get breastfed. I had to have a special formula.

So, I assume you allergic to a lot of food stuff. But what can you eat?

ill reply to this later when i can make a decent list.

Btw I have replied(ish) in the sub text of the first post.

Are you able to take honey, unsweetened chocolate, or maybe most vegetables?

Yep

How many times have you accidentally triggered the anaphylactic response and what do you have to do when it happens?

As I can remember I have never had a reaction, but the way my parents found out was when I got fed breast milk and had to be driven in an ambo to hospital.

How do you know you’re that severely allergic to all these things if you never had a reaction?

Prick testing, I can never be 100% sure unless I eat it but it’s most likely I am.

I don't want to give false hope, but I had a nut allergy and prick testing showed I was 100% deathly allergic to it, die on contact.

Turns out I just had very sensitive skin and prick testing was innaccurate. While I certainly can't eat it some of them and will get violently ill, I won't go into shock.

Ye, they do a control with saline. But it’s better to be safe then to be sorry (I’m not a contact shocker only ingesting)

When i do have one i have to stab myself with a needle.

SECOND?! It gets worse?

Some people can get into anaphylactic shock when they touch something they are allergic to.

I have an experience with that actually. I used to teach Hebrew at a religious school at my synagogue that doubled as a private day school during the week. The day school was nut free, the religious school was not. So one Monday morning a kid goes into anaphylactic shock when school starts. His epi-pen isn’t enough, he has to go to the hospital via ambulance, almost dies. It took a lot of detective work, but they figure out that the kid who used allergy kid’s seat every Sunday had a PB&J sandwich the day before. A molecule or two was left behind after cleaning and when the allergy kid touched the desk Monday morning, BOOM, anaphylaxis.

Our entire synagogue is now nut free 100% of the time.

Yep, I’m not that bad I have the ingest it but otherwise yea BOOM.

Can confirm. I’m ANA to alcohol, via ingestion AND contact. Someone decided to be ‘helpful’ and whack hand sanitizer on me when I was in the grocery store, and it put me into anaphylaxis. Last thing I want to do is be in a hospital unable to breathe right now.

So, yeah. Dumbest allergy ever. Have to be careful with everything from the accelerant used in inhalers to making sure my boyfriend brushes his teeth really well (and washes his lower face) before kissing me if he’s been drinking.

Wow ethanol allergy? That must really suck.

The worse the allergy has gotten, the more restrictive things have become. No bars on St Paddy’s Day, only go to concerts with friends I trust well enough to stab me in the thigh with an epi-pen. Warily avoiding certain foods in case people forget to tell me it’s made with a wine sauce (I know it’s meant to burn off during cooking, but there was this one time in a fancy restaurant that’s kind of made me paranoid).

No normal perfumes. Making sure the medical staff don’t automatically reach for alcohol prep pads. Reading every label of cleaning products. Searching for alcohol-free shampoos, skincare, and makeup.

Hmm that sounds really bad, like the alternative for alcohol pads would be iodine, and that gives you a red stain.

Are your allergies related mostly to food or do you have problems with grass, pollen, animals, etc.?

Both

[deleted]

Yeah I am.

Hi there! What is in your special drink?

https://drive.google.com/file/d/1y_xkO-cUao0VTzFuAluegFcSxRGx0y_B/view?usp=sharing

https://drive.google.com/file/d/1NcZUxsU0VOsS2pzXLawTav25uEaOp1uo/view?usp=sharing

"Not suitable for general use" well damn...

Does this mess with your stomach/bowels or are you basically used to it now?

55% corn syrup. I wouldn’t drink that if I got paid.

Ye corn syrup is shit for you, but I could live with only that.

Is that EleCare?

Yep

I know it's out of necessity, but how do you stand the taste? My son was on that for 1 year and it tastes so bad

Eating it for as long as I can remember. It tastes like nothing to me.

So does this pretty much regulate your daily nutrient needs or are there side effect to tbe fact that you can't eat most foods?

I have a really hard time getting nutrients into my body for a variety of reasons (none of those reasons being clinical) and I drink like the regular store bought ensure and similar because otherwise I'm faint and get headaches all the time .

I eat this on top of my normal meals, otherwise If I only had the drink and some snacks I would shit like rocks and always be hungry.

Ensure

No it’s elecare

What do you wish everyone knew about people living with conditions like yours?

If you could remove the anaphylaxis or gain any superpower of your choosing which would you pick?

One main one was when I was in primary school, I got bullied a lot because everyone would think I was contagious. And I would probably pick a superpower as I have never tasted what I’m allergic to so I don’t crave it.

What do you eat on your birthday?

I had a really weird tasting cake made a form like rice flour and cocoa beans.

Is there a food that you’re the most curious to try?

Probs vegemite on toast. (I’m allergic to both)

This had to make childhood tough. How early on did you display symptoms? Were you an infant? What was diagnosis like?

Edit: rogue apostrophe

Almost dying xD. But i don't remember was very young. I have also been seeing a specialist for as long as I can remember.

My 11 year old son has a disorder called eosinophilic esophagitis. It causes pain and swelling in his esophagus due to misbehaving eosinophils. Because of this, he is on a very limited diet and drinks a formula called Elecare to replace his calories and proteins. He has 17 safe foods, and has an anaphylactic milk allergy.

As an older kid with similar issues, what advice can you give my son on how to handle life with so many allergies?

Just be careful, don’t take risks. If you don’t know don’t eat it. And life is crap sometimes you gotta deal with it. Oh ALLWAYS CARRY YOUR EPIPEN. (the formula I take is elecare)

Thank you! He’s actually 11 today!!! I’ll pass on that advice to him. I knew it was Elecare by the back of the can :) Look at it long enough and you just know. He’s been drinking it/ g tubing it since was 8 mos old.

Have they ever talked about feeding tubes with you? Also, have you tried the flavoured Elecare or the flavoured neocate?

Nope with the tubes, I have food intolerance on top of my allergies so they didn’t give me the flavoured version. And np with the advice pass my happy birthday wishes to him.

He has some intolerances too - and Fructose malabsorption disorder. It’s a shame you haven’t had the flavours. If your specialist ever talks about trying it, you should. It’s some variety in the boring life you have food wise.

I’ll pass the wishes on for sure!

Thank you for your answers. It’s a tough life and I know, for my son, it isn’t going to get easier. Any advice on how he can cope with his life as he gets older is great.

They won’t put me on the flavoured elecare. As I was bullied in primary, I’ve allways been tough as nails, but what got me through that were some really good friendships and knowing how bullies think. Not giving them attention is really helpful. Coping with the allergies my train of thought was I never ate it so why would I want to eat it? Making good freindships can really help you though tough times.

Again, thank you! I wish you luck in your life. Stand strong, and live without fear.

Np, you too

Is the root cause of your anaphylaxis known?

No its not known.

What would your Death Row final meal be?

Probs a pork chop tbh.

I mean if I were you and about to die anyway, I would probably go ahead with that vegemite on toast

Lol

I’ve said that if I were on death row, I’d want some kind of stuffed shellfish, and the stuffing would have walnuts and almonds in it.

Btw, going into anaphylaxis as an adult, when you’ve never done it before, sucks. If you haven’t had that joy, lmk and I can describe it for you.

I’ve been told it’s like your Adam’s apple is too big for your throught. I hope to never go into shock tho.

How are you sure that you still have these allergies? Are you regularly tested for everything?

I get tested every year. I cant be 100% sure because I haven't eaten it but I do use prick testing.

Favorite food or meal that doesn’t trigger a reaction?

I love a mean pork chop. (the only meat I can eat)

Are you able to switch up how you season it? Or do you have to keep things pretty bland?

Yea pretty bland just like salt and MORE SALT. spice doesn't sit well with me.

I'm sure you've thought of this, but different cooking techniques will give different flavours. I bet you're an expert in cooking pork chops to perfection!

I assume that means you can use pork fat as a cooking ingredient for frying etc?

Yea

Can you eat a smoked pork chop?

Well, I can eat bacon and ham so I would assume so.

Wait wait, so no beef, no chicken/poultry, no fish? Whoa man..

Well some people say fish is a meat some people don’t but I can eat fish. But none of the others.

Your special drink container seems small, does it cost a whole lot of money, in order to live?

Its on the pbs otherwise it would cost like 2k to live per month.

Ssshh don't tell the Americans they'll get confused.

Ahahah yea true

Ps, sorry about messy handwriting.

Dont worry man, we'd all write like that if we were allergic to pencils

Ahah nice.

Do you get multiple flavors or do you need to eat/drink the same thing every day?

The drink is flavoured the same EVERY SINGLE TIME. (it apparently smells like shit but i have gotten used to it and cant tell.)

What's your favourite food?

Pork

After reading some of your other replies this made me crack up lol im glad you’re able to have pork and rice that sounds pretty good to me

Yeah it’s keeping me alive and sane.

Did your parents have any dietary issues or practiced a specific diet?

nope

Is there any places that is an absolute nope for you? Is there any restaurants that offer you safe food?

Nothing really as long as I'm careful and don't go into like a cheese factory or a flour one. Too risky to eat out parents just cook for me.

What about medical stuff like surgery or medication? Are your also allergic to substances from that area?

Nope, not really. Except for flavouring and stuff, that might set me off.

How often do they reassess how allergic you are to different things?

once a year

Of all the foods you can’t eat, which one is hyped the most?

probs baked goods like cakes and bread and things.

Shout out from Canberra! Cool idea for an AMA.

Any luck with goodberry’s/rubies?

Nope allergic

What are some of your allergies? Are you allergic to water or anything that is difficult to not come in contact with?

I don't have allergies to water or anything that server just ALOT of allergies.

Hey Zach!

Do you know of anyone else who has the same condition- a family member, or people in support groups (if you are part of any)?

Are you able to spend time outdoors?

Nope I’m the only one, I also love going outdoors.

what do you eat for breakfast?

Special Drank

your not wrong there, tho sometimes i have bacon with no eggs.

If you got to magically wave a wand and remove your allergy to just one thing, what would you pick?

Probs gluten or eggs

Is it at all related to MCAS, or something different?

The cause is not known.

Are allergy injections at all effective for you? Can they lessen your allergic reaction to environmental allergies at least, even if they can't cure you?

Never had them

What common over the counter medicines can you not take?

hmm nothing really.

How has travelling been for you? Is it more difficult to find food when you are in other places?

Travelling over seas is hard, I’ve only discovered last year that I can travel overseas on a cruise, they managed to keep me alive and well. But interstate is not that bad.

I heard years ago about a gal who had to drink orange juice cause she was allergic to water, any kind of issues of that or worse level?

Im not allergic to water or the like but I am allergic to a lot.

Have you tried hook worms?

Nope, do they taste good?

Do you drink Ensure?

No elecare

Dude, I'm so sorry. This sucks for you.

Has your Allergist given you some hope that you will age out of this? Just like over time we can become allergic to things. Is it possible that some of those things your allergic to will start to fade. Or would allergy shots help?

I'm sorry if that sounds stupid. I'm sure that I am not understanding this correctly. Yes, we can all have allergies. It's just not to volume or degree you have them, but also it's the severe anaphylaxis reaction that is so rare?

They say I would and kept on giving me ages. But they have given up.

Is it genetic or did something "break" your immune system while you were a fetus (like medicine that's normally considered ok for pregnancy or was she ill with you in your belly)?

Do you react the same if your food is cooked through?
(I have an allergy to carrots, but it doesn't seem to affect me when it's cooked. Seems to be different with hazelnuts though. Nutella recently triggered a slight reaction)

Does hyposensitization work?

I’m not sure about the cause, and no cooking stuff doesn’t help. The doctors won’t let me try new stuff because I’m just allergic to so many things.

What is it like going to restaurants? Birthday Party, date, family outing.

I have to bring my own food.

How many times have you watched the movie Bubble Boy?

Havent seen it yet, XD

How much water do you drink daily?

I exercise a lot so I drink about 10 cups a day.

Do you have to use a special toothpaste to clean your teeth?

Nope

What is the one food you wish you knew how it tasted?

Vegemite on toast (I'm allergic to both)

Are you vaccinated?

Yep

What would you be more allergic to: one horse-sized duck or a hundred duck-sized horses?

I’m allergic to none of them.

Are.... you allergic to sex juices?

Hmm I don’t think so.

What’s the best tasting food you’re allergic to?

never tasted it so don't know.