Triggers in non-allergic asthma

[Lysistrata]

So, I'm pretty sure I have non-allergic asthma given I can never muster enough IgE for Xolair and also kept getting negative allergy tests. Most of my triggers I would consider non-allergic - weather-related, smoke, scents and sprays, viruses etc - things which tend to act directly on the airway rather than being mediated by an allergic reaction.

However, I've just found I have a new trigger - mango, and it seems to act more like a food allergy. I had a tiny lick of a mango fruit pot thing (wasn't mine, my friend was eating it and I was curious) and boom! instant asthma reaction. It was all asthma too - no hives, swelling or anything like that. Not fun but got it under control with lots of ventolin in the end.

This is also what happens when I encounter rose, lavender, violet and some other flowery/fruity things in pretty much any form - smell it or eat it, it will give me asthma pretty quickly and with very small amounts (one time: sip of cocktail with one ingredient containing a bit of rosewater - I hadn't known till I reacted and we looked it up).

I am curious to see if anyone else has this, especially with non-allergic asthma? It seems more like an allergic trigger to me especially with things I eat, but then if I catch a whiff of rose etc in handcream or whatever it will have the same effect, and that acts more like me getting in the way of perfume or aerosols which is not considered to be an allergic reaction (see above re effect on airways).

Just to add to the confusion, I also have hayfever - apparently this is possible with non-allergic asthma, I looked it up though my consultant finds it odd. Definitely hayfever though and I need my fexofenadine and Avamys spray - I tried stopping the other day and my nose objected after a few days of no Avamys! I suspect the allergy tests weren't telling the whole story as my nose is reacting to something even if my lower airways aren't!

Anyone else? I am currently rather fed up with being a freak and having the ongoing 'trigger roulette' thing, though there are much worse allergies I know as these aren't that common.

[lejaya]

Hi, I have non allergic asthma and food allergies I am allergic to chilli, shellfish and technically dairy products (lactose intolerant). When I eat chilli or shellfish I cough alot and my breathing gets worse but nothing else. I also have allergic eczema so it is possible to have both. I have a severe allergic skin reaction to nickel to the point where I cant wear most jewellery.

Lejaya

[Lysistrata Administrator Community Ambassador in reply to lejaya]

Always nice to know I'm not the only one... Does dairy give you asthma or is it a stomach thing?

[lejaya in reply to Lysistrata]

if I eat dairy products I get stomach problems and eczema but the others are just asthma. Im also allergic to coloured alcohol makes my asthma really bad

[Lysistrata Administrator Community Ambassador]

I forgot about the chilli! Once had an asthma reaction from my boss's lunch - not sure what was in it but smelt of chilli. I didn't actually eat it (stealing boss's.lunch is bad career move lol), it was enough to be in the same room it seems.

[strongmouse]

Hi if you are not exposed to an allergen them your IgE at the time of a blood test will probably be normal. This doesn't mean you are not allergic simply that the test isn't showing an allergic reaction in the way it might for someone say who has a blood test for grass pollen at the time when grass pollen is high. As I understand it, and I am no expert, IgE is specific to what they are testing for rather than a generic allergy.

You can have tests for specific allergens if you think you are allergic and need treatment. Many doctors have little training on this so you would need to find an allergist near to you. Allergy UK has a helpline or Action Aganist Allergy if you want more information.

I have food allergies, pollen allergies, inhalant allergies (such as dog fur or mould) and I react to many chemicals, sometimes with asthma type symptons sometimes migraine. The latter are not true allergies and there are no blood tests for them. It is complicated. Plus I have asthma which tends to be mild unless I am reacting to pollution (such as traffic pollution) or inhaled pollen or perfumes. These are recognised triggers or excerbators of asthma symptoms (see Asthma UK website). There is another organisation "Multiple Chemical Sensitivies" and they have a website and forum and are very helpful. No, you are not alone in finding you have muliple triggers.

[Lysistrata Administrator Community Ambassador in reply to strongmouse]

Hi, thanks for your reply. I have had the total IgE blood test plus skin prick and blood tests to measure IgE response to specific allergens- all negative though I have been told that they are not perfect by a respiratory allergy specialist. As far as I know, total blood IgE is a marker of allergic asthma and can remain high in the absence of a specific allergen - total IgE is one of the criteria for Xolair (which targets IgE) along with response to one or more specific allergens (I got tested a lot To see if I ws eligible, because my asthma is troublesome).

I do have multiple asthma triggers which are fairly typical.ie paint,perfume, smoke etc, and most are not allergic-mediated. I was confused by these food triggers because they seem to act both like an allergen (eat it) and like the respiratory irritants (smell it). Maybe it's just that when eating I smell it up close so it's that direct airway effect still rather than an allergen. Thanks for the links but I suspect allergy tests wouldn't change much- just need to avoid them!

Always interesting to hear from.others with multiple triggers of different types!

[strongmouse in reply to Lysistrata]

Thanks that's interesting. I take an antihistamine daily but it doesn't seem to make any difference to asthma reactions, only food. I find the chemical triggers, perfumes, scented products especially are very difficult to manage day to day. It's a very smelly world! New plastics also cause me breathing difficulties and we have to air them off before I can go anywhere near them. I often wonder about "the hidden" ingredients or contaminants.

Hope you find some additional help / information.

[Lysistrata Administrator Community Ambassador in reply to strongmouse]

Ugh yes - I constantly get surprised by perfumes etc - I wish shops wouldn't do that thing of having perfume by the till as I've been caught out by that a few times (though I can see why they do it from a commercial POV). Perfume departments in large shops are also not fun. I find my whole day can be derailed by a chance perfume/paint etc encounter though luckily those usually do resolve. My unknown trigger/weather-based attacks actually tend to be more severe in the end but it's still really annoying to be so easily ambushed by all the scents etc!

[Kiiam in reply to Lysistrata]

Absolutly : you walk past boots In The large shopping malls these days , with no doors , the perfume section grabs you firmly as you walk by. I’m all eyes these days if anywhere new : and if i don’t see them , my daughter drags me over the other side of the shopping mall like a criminal , or deranged mother , and shouts loudly ‘wheeze alert ‘she really cracks me up 😂😂😂😂

[Kiiam]

Hi Lysistrata , I always read your posts and breath a sigh of relief, because your symptoms so resonate with mine so felt like really should respond , instead of just sitting here . My asthma is non allergic , responsive to some smells, weather heat\cold humidity, virus/bacteria : and yes I do get mild hay fever in the summer, but non reactive, and I recently seem to be reacting to different foods , and get itching occasionally, fir which I take portion . Recently been attending difficult asthma clinic , and it’s looking like my asthma is also non - eosinophilic too : but still providing blood tests and on reduced steroids ....... airways are hyper responsive , and also bring assessed for VCD ...... a simple answer would have been nice, I think they were hoping just to quickly assess and put me in the new injection, but looks like I’m sharing the long road of don’t knows with you : so your not alone out there ..... and thanks for writing as you do ..... it has made me smile a few times, relief I’m not just crazy , weird and imagining that this all happens xxxxx

[Lysistrata Administrator Community Ambassador in reply to Kiiam]

It's always nice to hear from someone else who's a bit odd asthma-wise! When I was first on this forum about 6/7 years ago (different name) and new to non-mild asthma, it was a huge relief to know I wasn't alone as doctors kept telling me it couldn't possibly be asthma and that I was imagining it all.

Knowing people with confirmed asthma had the same definitely helped me feel less weird! It still does given I think my difficult asthma team want to help but even they think I am weird with how I am lol - pretty sure they also thought initially either that I didn't have asthma or that they could stick me on the new injections, and I had a few letters at the start saying I could get mepolizumab as soon as I produced some eosinophils. So far they consistently fail to turn up but all credit to the team, they are still looking lol. I do think that's not going to be the solution and hoping we can explore other options.

I do get glimpses into how there may be other oddballs in the clinic - I am seeing the asthma psychologist now who actually seems to understand the stresses of dealing with the system as an oddball and doesn't just go on about how not being able to breathe is scary. I'm not trying to play that down for others but my main fear is actually not being taken seriously and turned away, and the limitations the asthma places on me, rather than the physical sensations of being short of breath etc - though I'm really not keen on those, they don't make me anxious in themselves. I really find it hard how the complexity of asthma and its emotions often seem to be reduced by people who want to make it an easier problem to deal with. We don't have the option to make it a less complex issue or we would do!

[Kiiam in reply to Lysistrata]

I have a friend who is a therapist, and has helped me loads , as you say it’s not the asthma itself, or the difficulty in breathing any more, I can deal with that , there are so many things that surround the condition, medical people’s attitudes , lack of understanding ..... I could go on ...... but I don’t like to winge ..... but I do I have to regroup sometimes and find my stand up and speak out head lol xxxx

[lejaya in reply to Kiiam]

Hi Kiiam

I have non allergic asthma to, and non eosinophilic. I am now seeing a cons at the royal brompton hospital, and my new cons is on an allergy and eosinophils hunt as he wants me to have the injection to. I'm sure all the tests will once again be negative so I will probably be in the same boat.

Lejaya

[Kiiam in reply to lejaya]

I am finding that at the specialist hospital, I’m at Leicester , that they do listen, and look at the whole picture far more than I have experienced before xxxx so I have fingers crossed , at least they will keep looking , and provide some answers, to make some improvements xxxxx fingers crossed for you too

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I have tree pollen allergy that doesent affect my asthma, when i have skin prick tests I respond to many things but I dont notice any effects when I am exposed to them. House dust mites definitely set off my nose eyes and asthma.

[Lysistrata Administrator Community Ambassador]

Gahhh random triggers strike again! Had small attack yesterday at work shortly after having some coffee and walnut cake. Timing may be coincidence as it wasn't immediate, but is suspicious - though my lungs are totally capable of having tantrums for no obvious reason!

I had a look at the ingredients as it was shop cake, and walnut seemed to be the only thing that isn't in loads of other things I eat with no problem. Bit surprised if it is that though - given my supposedly non-allergic asthma, plus I somehow thought there would be other signs of allergy too eg swelling or hives if nuts are the issue, but was just the asthma here. Might ask AUK nurses for advice as I don't want to do it again but also don't want to start claiming an imaginary nut allergy! Prior allergy tests have always been negative even for things I am pretty sure my hayfever reacts to.