Obsessive fear of anaphylaxis

[Ceriane]

I have angioedema which was related to my body being run down with vitamin deficiencies, I had all allergy tests and have never had anaphylaxis. However, over the last year I have had an increasingly obsessive fear about anaphylaxis. I used to go wherever I liked and eat and drink whatever I liked but now I’m scared to go anywhere or eat when I’m out and it’s affecting me on in days at work and socially. The anxiety and panic attacks are off the scale. I feel like all I can do is stay home and eat (and increasingly short list) of things I feel safe with. I don’t know what to do. I carry an epi pen but my panic attacks are so severe I wouldn’t know if it was that or anaphylaxis and I know I would just flap about panicking if it happened. I just don’t know what to do for the best and am in quite a state with all this.

Well, you need to go back to your GP as this is something that is affecting your everyday life.

Has anyone else ever been like this?

Sorry to hear this.
you’ve developed anxiety and need to get help.

You’re right. I am starting high intensity CBT therapy soon as it’s got out of hand. I really hope it helps.

Best of luck. It’s very understandable that your brain has connected 2 and 2 and made 5…..

I think it has. I have never had anaphylaxis and am probably no more at risk of it than anyone else but the angioedema has heightened my awareness of allergies.

I'm surprised you managed to get an epipen prescription without previous anaphylaxis (I assume you carry 2 as they should always be prescribed in 2s?). Have you actually seen an immunologist/allergy specialist?

I was given an epi pen because of the angioedema. I have also had rashes after eating quorn and prawns and I have had allergic reactions to a couple of medications (without swelling), so I don't carry them for no reason and yes I have two.

Ok, there's a really good book by Ruth Holroyd called 'The Reluctant Allergy Expert', which, if you can get hold of a copy, is really good on the anxiety side of things.

I wonder if seeing an allergy specialist dietician would help? I was offered this when I was diagnosed with mine, but as my allergy is to wheat gluten it's fairly easy to get info because I have to follow the same diet as someone with coeliac disease.

Eating out can be really stressful though, I do understand that

Thanks. I am under an immunologist and have been tested for allergies.

OP it’s apparently common to fear anaphylaxis more if it’s never happened to you.

That’s interesting. I feel that if I had it and I was out somewhere I would just flap about, panic and not know if it was a panic attack or anaphylaxis and I could end up not taking the right action. I just imagine it to be overwhelming and terrifying.

I'm the same OP. I don't have any diagnosed allergies, but when I was pregnant with DS, who is now 23, I developed an irrational fear of a nut allergy. Then it included sesame. To this day I won't eat any nuts or anything with sesame seeds or oil in. Not even if they have allergy warnings on for possible traces.
Then about 15 years ago, I put sliced cucumbers on my eyes and they swelled up, so cucumber is off limits too.
I wish I wasn't like this and it does affect socialising, but at the time the doctor wouldn't offer me any allergy testing to put my mind at rest, just said impatiently, "You're not allergic to nuts" and hoped that would fix me, so I really do empathise OP

Thank you. Let’s hope we can both get past this. I’d love to be able to go anywhere I want and eat whatever I want when I’m out. It started out with avoiding nuts and seafood and now I worry about things like cocktails in case there’s a chemical in there I might react to and now I’m scared to eat anything when I’m out because I don’t know every ingredient that’s in it.

This is interesting. When my son got diagnosed with nut allergy it was striking how the advice consisted of “be afraid, tell everyone, be hyper vigilant” type advice.
And as we all know, anxiety looks for new areas to colonise….

Op are there support groups for the condition that you DO have?

I have an anxiety condition that comes out when I fly. It’s too complicated to explain to the stewards in-flight. So if it kicks in I tell them I’m scared of flying in order to get the support I need.

i wonder whether you are doing something similar?

”I have also had rashes after eating quorn and prawns and I have had allergic reactions to a couple of medications”

hang on -you ARE at slightly higher risk. It might be wise to eat prawns only at home
i feel you are under-supported medically. The book “understanding allergies” is good.

Oh @Ceriane your OP was me at 18. Constant panic attacks when I ate. Then not being able to distinguish between the panic attack and an allergic reaction. And then having panic attacks about having panic attacks. Mine was a PTSD reaction to having had an anaphylactic reaction at 17 (I'm allergic to nuts) but for me it was more about the fear and the fact that I felt as if the ground beneath me just wasn't certain anymore. I couldn't evaluate what was safe.

I did seek help and one thing that was said to me was that I had to find my level of 'acceptable risk'. Everything we do in our life has a measure of risk to it (like getting in a car!) but my reactions were out of sync with the actual risk. That acceptable risk phrase really resonated and I clung to it like a life raft, so I'm sharing it with you in case it helps.

Severe allergy anxiety is an increasingly recognized issue for both sufferers and parents of allergic children. The guy who runs the maycontain Instagram account talks about it a lot and has interviewed others about it. Worth checking out.

Thanks all.

I’m not eating prawns or quorn at all not but it’s the fear of eating anything when I’m not at home.

That's how I was. I was terrified. I was in Uni but living at home with parents. I'd take a packed lunch to uni every day so I knew what was in it and all the labels etc. And then I'd still get to lunchtime and be terrified to eat it. I'd be scared if eating alone in case I had a reaction and scared to eat in front of my friends in case I had a panic attack. More often than not I'd just throw it in the bin. I lived on bananas because there was no chance the food inside could be 'contaminated' but I had to be really careful that the outside of the peel didn't touch the inside or my hands didn't.

I honestly felt like I was going mad. I was losing weight, was unwell and developing some.kind of eating disorder I think.

It's so hard. I really get it. It's not about whether a reaction is likely or a genuine risk.

I'm not sure what I can say that's helpful but I did seek some support with it and I did come out the other side. I kept breathing through panic attacks and trying to get them under control.

It'll get better. But know that you're not alone in the meantime. It's common enough for people who've had allergic reactions.

Thanks. It’s just so scary isn’t it. I tend to be okay eating at home and things I know I’m safe with. I mainly work from home and on in days at work I just take a really boring lunch, but get anxious as they tend to have a lot of being and share days. Going out for meals I’m okay with close family and places I’ve been before and things I’ve had before but new restaurants and out with friends who always want to do sharers, order cocktails etc have now sent my anxiety through the roof. I tend to panic in general at symptoms and have anxiety and panic attacks regardless of what I have ate when I’m out and not close to home. I really hope I come out the other side. I have friends who always seem to want to do the large heavy and order loads of sharer stuff etc so I avoid nights out like that at the moment.

I would eat next to hospitals ….. you can control things by being near to help.

i would eat on, say, a plane.

I’m not always going to be near a hospital though. That’s like saying I can’t go on holiday or go out socially etc.

Not sharing food when you've got an allergy (or even an intolerance) is completely sensible though. I won't share food or eat from buffets. I don't see that as problematic at all, and I don't care what anyone else thinks as it isn't their life on the line. It's definitely worth considering the notion of 'acceptable risk'. So when I eat out I research, I check in allergy groups I'm in, I'm conscious of the sort of foods they handle and how likely cross contact would be. I'm still twitchy about things I thought were causing my years of reactions (it took me over 20 years to get a definitive diagnosis as my allergic condition is weird/rare) but that's ok, and I'm slowly expanding what I class as acceptable risk. But I will walk out of somewhere if I'm not happy with their allergy info or procedures.

I think I’m allergic to prawns (possibly) and quorn. I’ve never had a reaction to anything else it’s more a fear of having a reaction. I do have skin reactions to certain chemicals though and that’s made me worry about allergies to food drinks eg I won’t drink things like fruit squash.