Salicylate Intolerance

Having read Diane Palmer's article on this site, Leigh Devin emailed us with her own experiences and offered to advise any other sufferer to the best of her ability. We took her up on her offer so please read what she says and then if you want to contact her, email us and we will put you in touch.

5th December 2014

I have just read with great interest Diane Palmer's article on salicylate intolerance. I was diagnosed with this in 2006 after taking a Nurofen which apparently 'tipped me over the edge'.

I had all the things Diane described as well as allergic rhinitis (I hadn't slept properly for years due to blocked nose) but the GP kept giving me nasal sprays because he said 'trying to find out what you're allergic to will be like trying to find a needle in a haystack' .....very helpful especially seeing as they contained salicylates which made it worse.

Anyway to cut a long story short, I ended up in hospital with an asthma attack after taking Nurofen, was then referred to Dr in the ENT at my local hospital. By pure chance he recognised my symptoms because a colleague and friend of his was doing a research programme on this very condition.

He referred me to her and she put me on a desensitising programme at the Royal Free Ear Nose and throat hospital on Gray's Inn Road, London. The Professor in charge of the programme was Professor Valerie Lund. I would strongly suggest if Diane is living anywhere near London (I was an hour away in Northampton) that she contacts the hospital via her GP as they are one of the only places in the country who seem to know anything about this sensitivity.

I had to move away after 3 years but the programme gave me a new lease of life as well as educating me on how to handle my condition.

I hope this helps Diane in some way as it kickstarted me being able to eat 'normal' food again. It isn't a cure as the build up can happen again but at least then you know that desensitising can just start over.

14th December 2014 - from Fiona:

Just spotted your post online and hope you don't mind me dropping you a line just as I had a bad reaction last night having to call 111 after Ibuprofen gel which I'd lathered all over top of back and ribs so a big dollop. It was within minutes. Got it washed off quick but lasted nonetheless.

Strangely I've had this on and off so long, reacted badly to a small amount of aspirin a couple of months ago plus landed in a&e last year from a tongue swelling and heart race after a food stuff as I was having the meal. Then again after the aspirin episode it was immediate tight chest couldn't breath heart racing just minutes after taking the tablet.
Long story short it was bad last night within minutes of the ibuprofen. Now left with a slight tight heart and chest tightness and what I'd call puffy.

I have been trying to put the puzzle together with a consultant for a while as nothing shows in blood tests and he mentioned knowing a girl who'd had similar to sulphites as this has also happened after wine, antacids and beta blockers. The penny however I feel dropped a few months ago with the aspirin reaction. I haven't as yet mentioned this to the consultant I've been seeing but after last night I'm wondering.

This asthma like effect is lingering today. My mum and I also suffer from hives and she's just had a polyp nose op which they say is linked to allergy so could be a family tendency here to salicylates.

The one thing I'm curious about is do you know of a treatment when there is such a reaction to salicylates, what can you take as antihistamines have proven a problem in the past too, and if a reduction in high salicylate food etc is the answer is it a long process?
It's strange but there's no other pointer I feel now. I'm 46 and generally a fit active hill walker but grinding to a slow halt with increasing attacks.

From Leigh:

Hopefully my email will shed some light on what the process involves. You need to get a correct diagnosis first. I didn't get a diagnosis for ages as it seems not a lot of people know about it.

When I finally got sent to the Royal Ear, Nose and Throat, I was given a regular allergy test which I didn't react to (the usual things like pollen, animals, etc) and after that I was an aspirin sensitivity test where I was given small doses of lysine aspirin over the course of an afternoon and my lung function tested hourly and if I remember rightly, nitrogen level(?), was tested from my lungs. It confirmed that I had aspirin sensitive asthma.

I tried antihistamine too but it doesn't get rid of the problem just masks it.

The way it was explained to me was that the salicylates build up in your body until your body has an overload and the reaction occurs. Omitting the foods was also explained as a lifestyle other words you do it for good unless you decide you can put up with symptoms and eat what you like and suffer the consequences at the time (this obviously depends on the severity of your sensitivity.)

The programme of being desensitised can go on for years...foods, drinks, toiletries (anything that contains salicylates can be absorbed through the skin, shampoo, body lotion, make up etc) have to be omitted...right down to toothpaste....fennel toothpaste was what I then used for ages.... I was given a list of salicylate free or very low salicylate food that I could have. While I was following this regime I also had to take tiny doses of powdered aspirin dissolved in saline and drop it on my tongue and up my nose. This was increased gradually over time.

It worked for me and when I had to leave the programme due to moving house I watched what I ate and drank but not as strictly. I was told that it can build up again but I have learned to spot the signs and do my own form of detoxing when I feel I have gone overboard.

My symptoms are asthma, severely blocked nose and phlegm (sorry a bit gross), itchy throat, headaches and tiredness (usually due to being unable to sleep properly as my nose is blocked). Certain things for me can trigger it more than is one of the worst! It doesn't help that wine also contains high levels of histamine and curries (the spices are extremely high in salicylates).

It isn't the easiest thing to live with at the start but, touch wood, I have been controlling it really well myself over the last 5years. I would definitely recommend speaking to your consultant mentioning the aspirin reaction and ask if you can be tested for an aspirin allergy/sensitivity.

And yes, nasal polyps are also a sign and I had camera up my nose regularly to check that I didn't have any.

Let me know how you get on and hope you get at least a starting point soon.

18th December 2014 - from Lisa:
(Lisa had emailed asking for help and we had sent her Leigh's response to Fiona above.)

Thank you very much. This is helpful and gives me hope. My problem is that my reaction seems extremely severe.

I have angiodema, urticaria, arthritis, have suffered anaphylaxis (altho didn't go to hospital as I was in Spain without my E111) and had an asthma attack Sunday after using something with salicylic acid in by accident. I have finally found a dermatologist who is trying to help, but there are no dieticians that can help with this within 100 miles of me by the look of it.

I have conquered make up, shampoo, I now know compressed deodorants have it and nail glue. But I'm tripping over all this stuff by having severe reactions, it's really frightening me as the reactions get worse. I only eat meat and rice, drink water and the odd tea or coffee.

It's so depressing, I love my cocktails but they make me keel over. I feel like all the life in me is going, and wake up with a swollen face and hands for a week! It's bizarre that this can happen when you've lead a normal life.

Thanks for replying though. It's nice to know I'm not the only one. Doctors seem oblivious to it mostly, immunology and allergy turned me away as although they can see my reaction, my IgE was normal so in their eyes I'm allergic to nothing. It's ridiculous and so frustrating. I've wasted months waiting for appointments just to hit another brick wall.

I shall battle on reading all I can on the web. Thanks for your help, both of you.

From Leigh:

Just a heads up. Tea was on the list of no no's, as was coffee apart from decaf.
Google online and look for low salicylate foods.

Also, here is a link to a page on the Salicylate Sensitivity site that may prove useful as it has recipes as well for low salicylates and may make it a bit less daunting.

From Lisa:

Thank you for replying.

I'm finding it hard because I've always drank tea and coffee without a problem, a couple of months ago I got it all under control while drinking tea and coffee and still drinking alcohol. But now it just seems to be spiralling out of control, although I think it's because I keep coming across items heavy in salycilate that I didn't realise were. Like who would have thought painting wart treatment on my daughter's feet would bring on all my symptoms + more.

The frustrating thing is I can get it under control but then I'll trip up on things I just wouldn't associate, such as make ups and deodorants. It also didn't help that after telling the hospital a couple months back that I couldn't take aspirin when I had my broken elbow fixed they sent me home with Ibuprofen. I had to call paramedics out, I thought I was going to die. I didn't know the link but I really thought the hospital would have associated aspirin with Ibuprofen, but nope clueless.

I've become desperate as its totally ruining my life. I've gone from a working Mum of 3 who went to the gym 3 times a week, to a puffy faced, rash ridden cripple who can barely walk in the mornings and evenings, it's so painful and disheartening.

From Leigh:

Yep! Any non steroid anti inflammatory' is out of bounds! Can't believe they gave you that, although saying that a similar thing happened in the chemist when I asked if they had anything that wasn't an NSAID and she said Ibuprofen and Aspirin were not the same wonder we get frustrated!

I work with large farm animals and often get injured with muscle pulls etc so my GP has prescribed me co-codamol and diazepam in the past...pretty strong stuff but certainly took the pain away.

Tell them next time you need painkillers that any NSAID is a no no and they will give you something else.

From Lisa:

Another one to add to the list – Flash liquid gel floor cleaner! It lists Benzoates on the bottle which I guess may cover Benzyl Salicylate, but I used it thinking it was fine, started burning, went dizzy, Googled it and it lists Benzyl Salicylate.

January 2015

From Lisa:

Happy New Year!

Went back to dermotology today who told me I suffer panic attacks, that's why I pass out apparently. I told him that's ridiculous I'm a full time working mum of 3, I take all in my stride, you could make me do a bungee jump I wouldn't panic. He couldn't explain how this links to crippling arthritis, urticaria, angiodema, lychin syndrome or atopic dermatitis he has diagnosed me with. He totally dismissed salycilate and couldn't even pronounce it properly.

Anyway after me questioning him on whether he felt I could go leave the clinic have a lovely meal and a few glasses of wine then, that I was in fact imagining all this, he said no I wouldn't suggest that and referred me to Southampton allergy clinic, saying he may well be wrong on this occasion. But did stipulate many times I am not allergic to anything, I said fine but I'm reacting to something right!

This really shouldn't be this hard, it's ridiculous!

From Leigh:

Happy New Year to you ( present frustration excluded!) I was told that I wasn't allergic to anything either. Had all the regular allergy tests at the ENT. This suggested to them that salicylate could be the culprit because if he knew about salicylate he would know that it isn't classed as a true allergy but a sensitivity.

By the way, I've found a very interesting Australian site, the Food Intolerance Network – might be worth a look..

From Lisa:

I reacted yesterday firstly from someone's aftershave at work, I had hives come up on my neck, I went and sat in another office they seemed to go down. Then last night I went in the Chinese to pick up a take away for the kids. Just from breathing the smells in I hived up but then I couldn't swallow, my speech was slurred, I had to go to hospital and am now on steroids. This was after having paramedics out Tuesday as after the doctor last week told me there was no relationship to foodIi ate my daughters rhubarb crumble three nights running.

Just a thought I was prescribed a nasal spray which I started Monday as my nose kept blocking, like it was swollen, I had some blood from it too. Maybe it was blocking for a reason? I think I'll stop the nasal spray.

Just one more thing, I had urticaria & angiodema at the beginning of last year which I believed was being caused by salicylate. I also had a metal frame put in my elbow as I broke it in September. The metal frame is being pushed out my arm and I'm on a waiting list to have it removed. Could this be linked at all to the hyper sensitivity I seem to be developing now. I am allergic to nickel, so if that is in my arm and my body is pushing it out I'm thinking this could be sending me into overdrive?

From Leigh:

You do need to stay away from chemicals, perfumes etc.

As for the nasal spray, it made me worse. It was prescribed by my GP for the same reason as you (nose kept blocking so badly that sleep was constantly broken). This was before I got my diagnosis at ENT. My nose bled and scabbed inside and even though it was temporarily relieved by the spray it felt much worse a couple of hours later. Try a non chemical spray instead....Sterimar is just sea water which can be helpful just to clear it for a bit.

Now that you have got a referral to Southampton Allergy clinic let us hope that they can sort you out.

Ed: Lisa's referral was delayed for 10 weeks so she decided to go to Southampton privately.

From Lisa:

Best £200 I have ever spent. I saw a Dr Erin and he's prescribed me meds etc, explained it all and even drawn me a diagram! It is a mast cell problem, and salicylates are defo part of it. It means a low sal diet so good job I've already learned all about that. Hardest part for me is little or no alcohol and eating out. I've never lived a moderate life ever so this will be a new experience. But I have my kids, so so be it.

My heads in a spin but I do feel a lot more in control of it all and definitely understand it a bit better. Still a bit emotional about the whole thing at the mo but I'm sure as I start to feel better I will start to appreciate a new way of life.

Bizarrely I am kind of relieved that I wasn't making this up, being a drama queen or just causing a fuss and that it is a real condition. Something that a whole lot of doctors have made me doubt!

Ed. If you wish to contact Leigh or Lisa please email us.

For an in depth investigation into salicylate intolerance see Dr Joneja's article here and for a wide selection of other articles on salicylate intolerance, including some personal experiences see here. For articles on other uncommon allergies and intolerances see here.

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