Nut allergy but 2 month wait until clinic appointment - advice, please

[EJ72]

DD9 has recently been diagnosed with a 'moderate' hazelnut allergy (the words of the GP) via blood tests in early October. These were organised after allergic-type reactions to tomatoes, red peppers and paprika (the colouring in Dorritos, fish fingers and so on). The hazelnut was a surprise, but in recent weeks (4 weeks on), the reactions have got worse.

Symptons: red face around mouth and cheeks (up to eyes); some mild swelling of one side of face but not huge - I can't tell if I am imagining it), allergy cough that persists for about an hour, even with Piriton. She says she feels weird and coughing but I don't think it is affecting her breathing. It is just a cough (a sort of dry one, sometimes barky).

This has now been triggered every day for the last few days/ week or two. Culprits seem to be anything with 'may contain nuts' labels on, as in nuts in same factory. Has reacted in last couple of days (birthday weekend!) to shortbread ('may contain nuts') a mini mars in a celebration box, chocolate sauce on an ice-cream and a chocolate hobnob at her choir. None of which 'contained nuts'. Obviously we have stopped them all now.

Have just had my referral through for allergy clinic: 8th February! Seems so far off. Getting in a state that this worsening effect is going to go anaphylactic at some point...

Should I contact GP for advice in the meantime? I don't suppose they will give me much further guidance? Would they prescribe an epipen just in case? I doubt it. I'm feeling anxious and low about it all. All new for me. Are there any experienced mums out there to kindly give me some reassurance / advice on best steps to take or what to expect? Thank you so much! Sorry for long post.

Allergy mam here. It's hard

My little one is younger with different allergies. Unfortunately, the most reliable form of allergy testing is to consume the item and check for reaction. You know she reacts to May contains so I would remove that from her diet. Then wait for allergy clinic. Keep a log of foods eaten and symptoms.

We have had allergy testing come back incorrectly for peanut (no allergy) and egg (allergy).

The symptoms you describe are IGE allergy and you should get a management plan.

I would contact the GP and ask if it's worth following a more nut avoidant diet in the meantime. I think you are right to be cautious about symptoms worsening by exposure.
There's a lot of information (I think) on the Anaphylaxis Society website and some supermarkets have really helpful information on their products.
(I'm allergic to hazlenut too!)
Chocolate is sometimes padded out with hazlenut (and it tastes good). I have to be slightly careful with cross contamination too. I know quite a few kids with severe allergies and with a bit of care and thought, it's manageable.

Ooh. Piriton! Check with the GP about using that. We would use that for some symptoms you describe.

Antihistamines
there is also a stronger medicine - it’s the one between anti histimines and an epi pen. It’s a tablet. Ask the Gp - they should know.
In the mean time avoid anything that has may contain.
As an aside a Covid infection - or fightng off one, can lead to an increased histimine reaction. Just something to consider

Parent of tree nut and fish allergy sufferer. My only caution against trying something to rule an allergy in or out is that the more you’re exposed to your allergen, the more severe your reaction gets, as your antibodies recognise the allergen more quickly.

Bloods can't predict the severity of reaction, skin prick tests can be more reliable, but as PPs have said, most important things are to be vigilant with what she eats, and to be aware that the severity of future reactions is unpredictable but can escalate quickly, you just don't know.

Check the Anaphylaxis U.K. site and make sure you know the signs of anaphylaxis. Not everyone presents typically so it's really important you know the risky ABC signs (airways, breathing, circulatory system).

Thank you so much! Such speedy replies! Wow. Great suggestions here - thank you. I will contact the GP again (to be honest, she was quite dismissive in October when I was called in for the blood results, but perhaps these new reactions might mean I get a bit more support? - she said allergy clinic would just give me antihistamines and tell me to avoid so no point being referred really but she did… maybe allergies are really so common that accounts for her response??) anyway, I really appreciate your replies.

is it normal to react to ‘May contain’ or do you think that suggests it’s quite severe?

Thank you @Yarnosaura and everyone else. I worry that I wouldn’t recognise anaphylaxis if it happened subtly… like the cough… I’m assuming that’s not a severe reaction but could it be? She knows about anaphylaxis from me a bit and from Operation Ouch (!) so SHE was scared when she first got the cough… which worried me.. and worried me I wouldn’t be able to tell the difference either!

GPs are not allergy specialists.

I would definitely avoid all may contains until you're told otherwise.

Bloods can throw up false positives (and often do, my bloods were positive to things I've never reacted to), which is why it's so important to see a specialist who can take a proper clinical history as well as interpret the results.

I would also keep a diary of everything she eats, drinks and any meds.

Were you given an allergy plan?

I'd be worried if reacting to May contain. Is there nothing else those foods have in common? My little one used to react if someone had the allergen and sat near her, without even touching her. This doesn't happen anymore though. Does she react like this?

Also try allergyUK, there's so much information on there. They have a helpline to chat to someone, probably better than the GP.

It's not that unusual to react to may contains.

To add, my son was referred for a less serious allergy (oral allergy syndrome) and the specialist was fantastic.

Thank you again, all. I feel a bit better about it all today. Emailed and talked to the school again today so they’re in the loop about the more frequent reactions. Haven’t got an allergy plan yet, no. Hoping for one when we see the team in February. Thank you @babysharksb1tch for the suggestion of the allergy uK website. Did you also mean that Piriton might not be the best choice of antihistamine? I think I’ll contact GP for a bit more advice. Thank you, everyone, again 🙏

Some GP's aren't clued up on allergies. I suspected my then 1 year old DS of peanut allergy and the first doctor just told me to avoid them if that's what I thought. Next GP referred us to the allergy clinic where his was confirmed as allergic to peanuts, given an allergy plan and prescribed an epi-pen.

TBH if your daughter is having these symptoms daily I would contact the allergy clinic, explain and ask to go on the waiting list for cancellations. My son's skin prick to peanuts was instant and quite a large reaction (forget the specifics) but even he didn't react to foods which may contain nuts so it sounds like your daughter may be more severely affected.

Thanks for this suggestion, @TommyKnocker . Great idea. I rang the clinic today, no cancellations but they said I could call back in a day or so to check. I’m going to call my GP for advice in the morning and AllergyUK as soon as I can.

Tonight she reacted to something in the last hour before bed. Red cheeks, one cheek slightly swollen, cough. We were so careful today - I can only think it was cross-contamination in the powdered hot chocolate she had - that was very stupid of me! But it all seems so mad: she was perfectly ok drinking that a week ago.

My one and only fear is that she is going to have an anaphylactic reaction before I’ve had advice / been seen at the clinic. Does anyone know if this likely or possible? I fear it is. Or would she already have responded with anaphylaxis if she was going to?

I have decided tonight I want to see an allergy consultant privately. I’m going to try to see one of the three consultants who head up the clinic where she’ll be seen in Feb (guys in London). I just don’t feel I can wait until February. Anyone had experience of this?

I saw a specialist from Guys privately for me, through Allergy London, he was amazing.

oh thank you, @Yarnosaura was that either Gideon Lack or George Du Toit by any chance?

Oh I see that that wouldn’t have been a paediatric allergy specialist for you! No worries @Yarnosaura

Haha, yes, I saw Stephen Till.

I've heard very good things about Adam Fox, but I imagine anyone who works with them will be great.

Hello, is that Covid affect just a temporary thing or permanent change to the immune system?

My husband is allergic to hazelnuts and other tree nuts. So he avoids anything which may contain almond, Brazil nuts, cashews, walnuts (potentially deadly for him). He used to be able to have pistacchios but not for the last few years.

As hazelnuts and almonds are the most common nuts in anything sweet, these are the ones which most commonly cross-contaminate, so he also avoids anything sweet that's says 'may contain nuts' as he sometimes reacts to them. Especially anythnig with chocolate, as almost all cheap chocolate and nutella type things (often found in pain au chocolat for example) have hazelnuts in. Savoury things which say 'may contain' are more likely to be exposed to peanuts, which are fine for him.
All this was worked out with various allergists over the last few years.

Are you sure this is definitely the nut allergy and not something else in common between these foods? Dairy maybe or something environmental?

Both blood and skin prick tests are not super accurate. Our consultant will only test for things where there was a previous reaction and wouldn't use the results to diagnose in isolation. They may suggest a supervised food challenge depending on the results.

In case you weren't aware also, "may contain" labelling is voluntary, I'm sure most brands will use it but it's not a legal requirement so it may not always be there in products where the same potential level of contamination is there.
We have found usually may contains products are fine for my son, but it could be that most of the product isn't be contaminated and in some rare cases it would be. I know there is a lot of discussion around whether to avoid or not and I think people have to make a call based on their attitude to risk and the severity of previous reactions.

In the meantime you could read up on a low histamine diet..

I wouldn't suggest doing an entire elimination diet without nutritional advice and guidance.

But low histamine foods will potentially help calm these reactions, if you avoid the high histamine foods and keep a diary.

I think someone mentioned covid can trigger reactions, sorry I can't recall her age, but hormones can also trigger responses as oestrogen kicks in.. and joy, fades out..

So a few other areas to look at.

Thank you very much for the further replies, and sorry for slow reply!

@Justcannot thank you, that's very helpful - especially about the specific risk for hazelnut cross-contamination. Does your husband therefore avoid ALL packaged sweet biscuits, chocolate-based things, etc? Even if they don't specifically say 'may contain'?

(Thank you, @boatyroo, for the reminder that stating may contain is not required by law. I didn't know that until recently, but googled it about a week ago...)

So I am working on the assumption now that ANY sweet product is a risk for cross-contamination for my DD, and assuming all products carry that risk... so far in the last ten days, we have avoided ALL shop bought biscuits and cakes, etc (including at a painful family birthday tea where I had not managed to bake anything for her in time!! - while everyone else ate mince pies, biscuits and chocolate cake, she had a slice of toast and water, poor love!!!).

So for a week we were doing well...

Then yesterday, she ate a tiny mini mars bar from an old party bag she found in a cupboard and reacted immediately - red cheeks, red inflamed lips, slightly swollen cheeks and the hallmark barking cough she gets.

Tonight too, even after packed lunch at school and a slice of nut-free cake we packed for her choir snack, she developed flaming cheeks, red sore lips and barking cough when she got home.

This is getting long... will post again below.

PS Thank you very much for the suggestion re the low histamine diet @greeandpink. Not looked that up yet but will do...

So my main question is - what would you do now?

I have 2 months exactly until my appointment. Is there any way I can access more specialist advice on the NHS? I realise I don't need A and E and I'm sure 111 would simply point me in the direction of the GP.

Did you wait months to be seen in an allergy clinic, or was it swifter because anaphylactic reactions?

About what to do in the meantime? We saw a GP again. He tried to find us a closer appointment online but couldn't, prescribed Benadryl and actually an Epipen for peace of mind...

Neither Benadryl or Piriton seem to work particularly well or very quickly. Piriton is actually better for giving her more speedy relief but it is still not that quick. And the reactions are so frequent, we just seem to be battling a new one every day. Should I give an anti-histamime morning and evening just in case of a reaction, as the prescription suggests? Does it work 'in advance'? Like for hayfever? My GP didn't really help that much with the detail of management, and I don't blame him.

And should we continue to avoid ALL sweet shop-bought food, basically? it doesn't help that she also seems to react to paprika powder and tomato products I THINK in chicken nuggets, fish fingers, fishcakes, tomato ketchup, etc etc but it is the hazelnuts that seems to bring on the cough and more severe widespread red cheeks, red lips...

I am loathe to go down the private route as I really want ongoing support in the NHS and we'd be self-funding, but would you book a private consultation now? I rang a clinic last week to talk it through but not booked anything yet. But surely responses several times a week are not healthy or pleasant... but is it harming her?

Thanks in advance if anyone has any further thoughts. Apologies for the incredibly long posts. Thanks so much for reading 🙏

I think, if you can afford it, and if you can get a speedy appointment, with the number of things she might be reacting to, and the stress and distress I imagine it's causing, I would get a private consult. For me it was the best £400 (or thereabouts) I've ever spent.

If you go to Allergy London and see someone who's from Guys you should get some continuity of care.

At this stage it's not just finding out exactly what is causing her reactions, it's also about getting a decent allergy plan in place, plus proper advice and epipen training too.