Life with a cashew nut allergy?

[WhateverSoup]

After a severe allergic reaction (but not anaphylactic) a couple of months ago my two year old had an allergy test, which confirmed that he is allergic to cashew.

We suspected it of course after his reaction but for some reason I thought the allergy test wouldn't show anything. I remember even wondering whether I could trust a negatively result.

I know food allergies are common and deaths from anaphylaxis are rare but I'm so upset right now. I feel like he's got this dark cloud hanging over him for the rest of his life. He'll never be able to just eat anything again, always having to check ingredients first, always having to carry his epi pens around with him. And once he grows up what if he isn't responsible enough to do that or gets drunk or feels awkward to check everything? What if I forget to check the ingredients? What if something is wrongly labelled? What if someone at nursery or later at school messes up?

Please share your stories with me of how a food allergy has affected your life or that of a loved one (both positive or negative stories are welcome). Or if you have any tips. Thank you

My 13 year old has a cashew and pistachio allergy (invariably the two almost always go together - was your son tested for pistachio too, if not I'd ask for that along with testing for other tree nuts).

DS carries an epipen but has never had to use it. We don't have cashews and pistachios at home, and we advise him not to eat any nuts when eating out and to ask/ let servers know. Given these nuts are expensive they tend to be advertised on menus, and not used as filler. We've not found this to be limiting in any significant way.

The biggest issue for us is cashews being used in pesto and in cereal bars so we check those carefully. As a toddler we also trained him to check all food with us before eating if given to him by someone other than us. School has always been strictly nut free and we made sure anyone else looking after him knew about his allergy and what to do.

A particular challenge if young when diagnosed is getting children to recognise a reaction if it happens, especially if they don't frequently come into contact with the allergen. DS ate a bite of a cereal bar containing cashew last year and didn't recognise his reaction symptoms immediately - vomiting, hives on torso, itchy throat. That was his first reaction since diagnosis at 13 months given our care in avoiding. I'm not mad that he now knows what a reaction feels like and knows what to do.

But don't panic! This all becomes second nature and really not a massive deal after a while.

I'm allergic to most nuts. I don't actually think an allergy to cashews will be too detrimental as they aren't actually in many food items... the use in pesto is a pain as I have to examine every jar for the ingredients.
I've had my allergy since ....well forever I think though I remember being able to eat pecans once upon a time.
Luckily I've never really had a severe reaction....though 2 dodgy ones fairly recently when I mistakingly had something with walnuts in. I just had to make sure I drank a lot of water and then was fine an hour or so after.
You may find he grows out of it but if he doesnt....just keep checking those ingredients.
It's fairly easy in the UK due to the laws on providing a list of ingredients in food when eating out bit overseas can be a lot more difficult.

I 2nd getting tested for pitaschios, my dd has a relatively slight reaction to cashews years ago (puffy eyes) and her results suggested low allergies for those 2.

@Lovelydovey That is interesting, I didn't know that! DD is 14 and has had a cashew nut allergy for several years, then earlier this year she had a nibble of a pistachio cookie and said "Erm, I think I'm allergic to pistachios too." She is fine with all other common nuts. DD knows to check all packaging and to ask when being served food by others.

I agree that it's generally not too hard to avoid cashews, as they are often proudly advertised on the packaging. The two mostly likely places they sneak in are pesto (they replace the even-more-expensive pine nuts) and some curries (they create the thickness and creaminess in the sauce).

My four year old DS is allergic to cashews and pistachio and had an anaphylactic reaction before he was tested, very scary!

That was 2 years ago and since we've never had to use his epi pen but we do take it with us everywhere. Most places will disclose nuts in food as it's a common allergy and he's great at telling people he can't eat nuts because he's allergic.

It is scary but it's part of life now so we just crack on. He's definitely not missing out on anything as a child because of it :)

Thanks so much for the replies everyone!! I guess at some point it will become second nature and just something we have to do,* *maybe similar to how we now naturally check.fof chiming hazards, baby proof, etc.

The allergy test included pistacchios. It was negative but the pediatrician said we should avoid them anyway as they have the same or similar protein, which is what causes the reaction. He also showed mild reactions to other tree nuts but below the threshold for allergy. The pediatrician said it might be worth giving him tiny amounts of something like nutella (hazelnuts) and see how he reacts but I'm too scared to do that. I'm sure he's had Nutella before though. Not often as I've tried to avoid chocolate for him in general but dh has definitely given it to him once or twice.

There was no reaction to peanuts as expected. He has peanut butter almost every other day ever since he's been weaned. I wish now I'd made sure to give him tiny amounts of other nuts as well. Unlike peanuts I didn't consciously give him other nuts but I can't imagine he hasn't had any. My fil is from India and uses lots of cashew nuts ajd powder in his cooking but I don't remember if Ds has had much of his cooking.

By the way I totally recommend wagamama for allergy safety. I was a bit worried as I thought their food will he full of nuts but they have a really thorough and clear system of checking for allergic ingredients and take it very seriously. I was very impressed.

Random grinny smiley. Can't seem to delete it. I feel like I should write something funny to justify its existence but I can't think of anything. I know I'm being dramatic but I Still feel like just crying.

Oh well...what is green and sings?

Elvis Parsley😁

Another two questions:

1. The number associated with the size of the reaction apparently doesn't give any indication of the severity of a possible reaction. I think it gives an indication of sensitivity but I'm not sure. For cashew nuts the number was 8. Does anyone know what this means? I tried to look it up but didn't find anything that used the same scale. I don't even know what the scale is or what the threshold for allergy is.

1. He also tested sensitive for dust mites (5). Does anyone have any experience with this? I'm really bad at changing our bedding. He does get repeated virally induced wheezes and some doctors have mentioned he might be diagnosed with asthma laster. Could dust mites have made him more susceptible or more sensitive?

My ds has allergies to milk and egg (airborne to egg as well)
if he’s going out we pre dose with antihistamine

It is a constant source of anxiety but we make sure we always have his allergy kit on us

It will be ok. 💐

Cashew is easy to avoid. If you want pesto, ‘Pesto genovese’ is most likely to be cashew free in my experience.

most schools and nurseries are completely nut free. Restaurants will take it seriously.

Get him into the habit of telling people when he arrives somewhere. Get him to check again when he is given something. If he hasn’t seen the ingredients, drill into him not to eat it unless it is fruit based. I’d suggest he avoids all nuts when not with you until he is old enough to properly read ingredients. Have a spare snack with you just in case what is available isn’t edible. As PP have said, cereal bars are often a problem.

always carry a packet of antihistamine with you, and have one in the car, the kitchen.

I have an anaphylactic peanut allergy, and carry at epipen. When I am eating with people, I tell them both that I have an allergy, and where my epipen is. I also wear a medical bracelet. Checking ingredients is just a part of my day now.

My son was allergic to both cashew and pistachio and latest round of allergy tests seemed to suggest they were now outgrown, so it may not last long anyway.

We live with this, only a wider range of nuts and some other foods too. It often goes along with asthma, as is the case for my DC, and eczema too. Dust mites too, we have zip up cases for duvets and pillows that are anti-allergen and really helpful.

I thought it would be an impossible fear to live alongside, and sometimes it still overwhelms me. I have the same fears as you about my child growing up, the teenage years, drinking and so on.

One thing that comforts me is technology: I wonder if any apps are available - maybe if when the child is responsible for carrying their own epipens everywhere, they could have an air tag or similar on the pen and an alert go off on their phone if it goes out of range to tell them they've forgotten it? That would be reassuring.

For going abroad, you can have allergy information cards printed in multiple languages to hand to staff wherever you eat. It means we're more likely (sadly) to go to big chain restaurants and hotels where staff have allergy policies and training (Hilton is very good!). We don't go and stay in remote places off the beaten track (abroad or UK); we make sure we are somewhere we could get to a hospital if needed.

The thing to remember is that the medication works. Antihistamines and epipens and inhalers work. So if your child has a reaction, you have what you need to make them better. You are trained and prepared, and he will be too when he's old enough. It does make the world scary, but you have a defence in place and you can trust it.

Research is always ongoing and one day they might find a cure for allergies. It's something which is sharply on the rise so many people have to live with them, and awareness keeps getting better. It's probably more manageable now than it has ever been. That said, it puts a huge amount of stress and anxiety on you and sometimes it will be so hard and daunting to carry - I'm very sorry you're going through it.

Thanks so much for kind replies everyone. Really appreciate it. Just had to tell his child minder. She was super nice and understanding about it but I feel really guilty about making her life (and the kids of the other kids) more complicated.

My son has a nut allergy - primarily Pistachio, Cashew and Peanut, although he avoids all. Previous posters are right, pistachio and cashew tend to go hand in hand

I had a childminder refuse to take on DS due to his allergies (17 years ago)!

Ds1 has a peanut allergy and a dust mite allergy. We check everything and he carries Epi-Pens, anti histamines and inhalers everywhere he goes. It's just become routine to check things now, what annoys is the most is when recipes are changed on some products, we've drilled it into him to always check, not to be complacent that something he had before is ok to eat now.

Like your dc, the sensitivity number doesn't correspond with the reaction. Ds scored very high on his RAST test for was dust mites but only a 2 for peanuts, his first reaction to a smear of peanut butter on his lips was severe, fortunately we lived very near to the hospital and he was ok.

DC3 has an egg allergy but allergy testing also showed a cashew allergy.

She was only 2 when diagnosed so had never really had cashews but she had had pesto (and never reacted).

Now we just avoid her allergens. She wasn't given an epipen as it wasn't deemed necessary.

Both my children have serious allergies and it's scary but you do manage. Eldest is now 19 and most certainly hadn't outgrown her milk allergy. My youngest has multiple allergies and it is harder for her. You have to learn to be prepared. There's also a really supportive online community of allergy families - the Natasha allergy research campaign is really helpful as is anaphylaxis uk and allergy uk. Allergy companions has restaurant recommendations- and I'll also plug my own site Lucy's Friendly Foods for reviews on restaurants and holidays and lots of recipes (and my allergy friendly cookbook, The Friendly Baker) 😊

You will get used to it, and things are much better re labelling and eating out etc than they were 20 years ago when I first started dealing with allergies. Both my DSs have allergies and the younger one has a very long list of food and environmental allergens. Yes, at first I felt like you do now, but now it's not something I even think about a lot, it's just an automatic thing.
It's never stopped him doing anything that any of his peers do. I was very anxious the first time he went on a school trip without me and even more so the first time he went abroad with school but it was fine.
He's only had one significant reaction in recent years and to be honest in a strange way it was a useful thing to happen. He couldn't remember any of his serious reactions as they were all when he was under 3 years old and he, as teenage boys are prone to do, had got a bit lax about checking things and carrying his EpiPen so it gave him a wake up call and he has been really good in the years since then. But that is the only time he has had an unplanned visit to hospital since his initial diagnosis - we've avoided multiple allergens successfully for over 15 years otherwise.
It's hardest at first, when the child is too young to understand and you are just learning yourself. You do need to have eyes in the back of your head and triple check everything initially. But it gets easier as they get older and you get more experienced. Of course I wish my sons weren't allergic to anything and could eat whatever they like - nobody would choose this - but it hasn't stopped them getting on with their lives and it no longer dominates any of our lives. Yes, it's always there in the background but that sense of it preying on my mind all the time that you are currently experiencing disappeared a long time ago. It's normal to feel how you are right now, but in my experience at least it will improve with time.

I wonder how they make the decision whether you need an epi pen or not. When ds had his allergic reaction to cashew, he developed hives all over, threw up, started wheezing and his voice became weak. We gave him piritone. By the time we went to A n E, all his stats were fine, breathing fine and hives had come down as well. They said that his reaction sounded like a moderately severe allergic reaction and we "could see the GP if he has repeated reactions like this". Us being dramatic worry warts, we went to the GP immediately who prescribed the epi pens mostly to put my mind at rest I think. He did recommend seeing an allergy specialist privately asap and the allergy specialist has confirmed that we need to be very vigilant and carry epi pens with us everywhere.

So in a way I still wonder if I'm over reacting and maybe this is nothing because they didn't seem too concerned at A n E. But then from everything I have heard and read you never know when a reaction might be anaphylactic and require immediate intervention. The pediatrician said yesterday that nut allergies usually evolve with time, which I take it to mean that they become more severe.

So shouldn't everyone who tests positive on an allergy test really carry an epi pen? Or is that overkill because allergic or not anaphylactic reactions are just so rare?

We were given epipens after an asthma diagnosis was confirmed

@WhateverSoup would you mind if I ask what the allergy test was like please? My dd has had an allergic reaction to nuts but is needle phobic and refusing to get tested. Complete nightmare. If I can tell her more about the test from someone who’s been through it it might help to reassure her.

Hello

I have a cashew nut allergy as well. I have anaphylaxis from them.

I haven't been hospitalised since the initial time 20 years ago. However I do get a reaction from talking to people who have been eating cashews and also from being in rooms where people cook with cashew nuts.

The best advice I can give is avoid Thai restaurants and restaurants that are specifically vegan. The rise of veganism might be great for the planet but it is awful for cashew nut allergy sufferers.

I don't eat any nuts at all just to be on the safe side. You can use your discretion as to whether or not you want to do that too.

I carry an epi pen as well. I always take the opportunity to show people how to use it as most people don't know.

The other hot tip is to keep an eye out for 'naked bars'. They are a common vegan snack that has become really popular. Lots of places offer it as part of the meal deal so I've come across them a few times. At a conference they were being given out and I had to leave because being in the same room as them made me unwell.

The other thing is lots of places say there is a risk of cross contamination on kitchens. If you avoid those places you won't be able to eat anywhere. So I'd say they are fine normally. For example nandos serves cashew nuts that are pre cooked. It's fine to eat at nandos but make sure nobody on your table orders them for example.

This was just a skin prick test. (You can also do a blood test but I'm not sure what the difference is). The skin prick test doesn't use needles at all.

The pediatrician had liquid samples of the most common allergens. He drew a grid with ten squares on ds arm with a pen. He put a drop of each samplw (and a control) into each square. He did ten drops for ds. He then had these tiny little prickers (look a bit like paper clips) with which he made tiny little pricks in the drops. Ds was screaming throughout but I'm pretty sure it's not because it was painful but just because he's fed up of doctors and being prodded. The pricks are so tiny that you can't even see them later. I had an allergy test done when I was a child and I don't remember it being painful at all. Then we waited for about twenty minutes. He then measured with a measuring tape the dimensions of the hives that had appeared on the grid.

How old is your DD? I don't think it's unpleasant at all for the child except that they need to sit still for a few minutes (so not popular with most toddlers I assume)

Ds (3) has peanut and hazelnut allergy. Peanut he reacted to peanut butter when weaning, hazelnut he’s never eaten but it came up on allergy test after peanut reaction.

He had full blood test that tested 300 known allergens ie food and things like dust or grass.
apparently the score Is out of 100. He was 20 for peanut, 2 for Hazelnut. Anything over 18 they issue an Epipen here.

He gets re tested annually to see if it’s decreased ( hasn’t so far). Will be tested again this summer. When he’s 4 next year he’s eligible for a peanut desensitisation program to try and reduce allergy risk. It’s relatively new. There might be something similar for cashew also

Skin prick tests aren’t very accurate, blood test better. The problem with skin prick is it has no actual level just yes/no, and also our consultant said you can only show reactions to something you have already been exposed to, so if they haven’t ever eaten something on test, if wouldn’t show an allergy

Thanks for sharing.
That's the thing with not knowing how severely allergic he is. The pediatrician said we could have cashew and pista nuts still at home as long as he doesn't ingest them and we shouldn't worry about cross contamination or when the ingredients say "may contain" or there is a possibility of cross contamination. And he said that maybe we should try giving him very small amounts of other tree nuts but I'm too chicken to do that.

Everyone in my family has loads of nuts so I really worry that others eating it or cooking with it won't set off his allergy.