Fifth Sense member Alahree McDonnell has Samter’s Triad (nasal polyps, asthma and aspirin allergy). Alahree attended the MACRO launch in October and during a chat with Professor Valerie Lund discovered that salicylates could be having an effect on her health. She’s set up a blog to document her journey of managing her wellbeing by controlling her diet. Alahree talked to Fifth Sense volunteer Communications Assistant Gudrun Lauret about her personal experiences.
How were you diagnosed with Samter’s Triad and what impact does it have on your daily life?
I was diagnosed with asthma and allergic rhinitis aged 19, when a trained nurse in my office noticed I had a wheezy cough I couldn’t shake. I got checked out on her advice and the GP agreed it was asthma and gave me a couple of inhalers.
Not long after, I had a job in a restaurant kitchen preparing desserts. One night I sent one up covered in spoilt cream; I had sniffed the bottle first and thought it was fine, but this was the point that I realised I’d lost my sense of smell.
I don’t know if it was a single event that caused this or if it happened over time, because you don’t tend to notice smells unless it’s something distinctive. One significant event around the time does stand out though – I was travelling to Australia with a cold and we had to touch down five times in total to pick up passengers, and after the journey I couldn’t hear for three days. The cough and cold just never went away. After being diagnosed with allergic rhinitis I developed nasal polyps – these were removed and are now controlled by various nasal sprays.
I discovered by accident that I was allergic to aspirin, because on the rare occasions I took painkillers I usually chose paracetamol. I took a couple to relieve a pain and soon felt really unwell, as if my chest was being crushed. The 24-hour doctor put me on a nebuliser and I put my reaction down to having had a few glasses of wine. I realise now that the combination of wine and aspirin probably caused the attack due to a sensitivity to salicylates.
Similarly, I discovered I was allergic to all NSAIDS by accident. During a visit to my sister, I was suffering from debilitating back pain, so she naughtily gave me some of her leftover prescription of Voltarol. We’d assumed it was safe as it doesn’t contain aspirin, but my airways soon closed up. I later learned that NSAIDS and aspirin contain the same active ingredient.
Then, around 15 years ago, I developed a new problem with flying. On the way home from a holiday I had my first experience of excruciating sinus pain as we came in to land. I was convinced I had a brain tumour and was really frightened, but thankfully a quick trip to the GP gave me a diagnosis.
I first read about Samter’s Triad about five years ago when I was referred to a dietitian for IBS. The dietitian put me on a FODMAPS elimination diet and I came across Samter’s during my research. I’d long suspected my sense of smell was connected with diet so I mentioned this to the dietitian, but she’d never heard of it.
My emerging understanding of salicylate sensitivity has led to a lot of things beginning to make sense. For instance, before I started taking medications I couldn’t drink white wine. My face would swell up, nose would get blocked and I’d get very wheezy. But as I rarely drank it, any direct side effects didn’t stand out.
A turning point came when I enjoyed a rather merry afternoon at a work ‘do’ quaffing a not too small amount of Prosecco. I felt really unwell on the way home, to the point where I had to cancel my evening plans, suffering a hangover before I’d even sobered up.
After that I decided it was best to avoid alcohol altogether, until a business trip to Spain and a celebration final-night meal led me to gin and tonic. Despite generous Spanish measures and very little sleep, I woke up feeling refreshed and hangover free. With a little Googling, I discovered I was probably allergic to the sulphites in the wine.
Thirty years of no sense of smell has had a significant impact on me (Alahree talks about this in her blog: http://mylowsalicylatejourney.blogspot.co.uk/), and it’s ironic that I can now taste some of the time but don’t have the freedom to eat whatever I want!
What treatments and investigations have you had for your sinus problems?
I’ve attended ENT clinics on and off over the last 20 years and been prescribed various nasal sprays. More recently I was prescribed Montelukast and a saline sinus rinse. Whenever I fly I take Otrivine for my sinuses and Sudafed for my ears. I have occasionally taken Betnasol steroid drops.
How did you find out about Fifth Sense and how has the organisation helped you?
A friend who knew I couldn’t smell heard about it on the radio about three or four years ago. Fifth Sense was in its infancy then and I had a long chat with Duncan Boak – it was amazing to finally find someone that understood and wanted to help. I went to the reception of the press launch in 2014, and met a lady who described almost identical symptoms to me. It took me a step closer to feeling like I might be cured.
Later, I read in an FS newsletter that Claire Hopkins, who’s based at Guy’s and St Thomas’ Hospital, was specialising in taste and smell. My GP had refused to refer me to Mr. Carl Philpot in Norwich, but I insisted on a referral to Guy’s. Claire helped me a lot, and my referral came at a time when I needed to be taken seriously.
For the first time I did feel like my lack of sense of smell was treated as a serious issue. She prescribed Montelukast and said I could take Betnasol up to a few times a year without any side effects (my previous consultant had banned me after three prescriptions).
What does Prof. Lund’s suggestion that you might be sensitive to salicylates mean for you?
I approached her after her talk and I commented that I was surprised that no-one had mentioned diet. I asked her if there might be a connection between my IBS and my Samter’s Triad, and she said it was probably the salicylates.
This rang a bell with me, so I started the reduction diet a few days later. By day three my sense of smell had returned. The realisation that pretty much all of my health issues are connected in some way has been like a lightning bolt. The possibility that I might be well again has funnily enough put the sense of smell a little in the shade.
The last couple of months, since learning about salicylates, have been a voyage of discovery, but it’s not quite the happy ending I thought it might be. My smell comes and goes and with time the spells are less frequent, something I can’t yet explain. The effects on my IBS, on the other hand, have been far more successful and my research has led me to start looking more into food chemicals, not such sulphites but benzoates, nitrites and MSG.
Everything I’ve found out along the way has come about through chance meetings and conversations. I hope that if I have success, others might too, and researchers may take notice. Perhaps Samter’s Triad, salicylate sensitivity, chemical allergies and IBS will then be far more easily diagnosed and, more importantly, treated.
What do you hope to achieve with your blog?
I initially started writing it for myself. I’m terrible at keeping a diary and thought if I wrote a blog it would discipline me and I could track my progress, even if no one else read it. When Duncan and Jim showed an interest in what I was writing I started thinking in terms of how what I was writing might resonate with other people.
There are obviously lots of reasons why people have no sense of smell, and there are people who have Samter’s Triad who won’t find this any use. But there also people out there suffering from IBS who have no answers and it may be a help to them.
I’m figuring out new ways of eating and new recipes so I’ll be logging these once they’re tried and tested. It’s an evolving project and I’m learning as I go along. The more I delve, the more interesting it gets, so I’ll be blogging as I learn and logging resources that others might find useful.
If my blog helps some people consider whether they might have a salicylate or chemical sensitivity and ask questions then I consider it useful and I’m happy to have played a part. I’m no expert so I don’t want anyone to think I’m doing anything other than sharing my own experiences.
Read Alahree’s blog here: http://mylowsalicylatejourney.blogspot.co.uk/
Further Information and Resources
A significant proportion of people with CRS also have a condition called Samter’s Triad, now referred to as Aspirin Exacerbated Respiratory Disease (AERD). This is a combination of asthma, chronic rhinosinusitis with nasal polyps and aspirin sensitivity. People with the condition find that taking aspirin or other non-steroidal anti-inflammatory drugs (NSAIDs), such as Ibuprofen, severely exacerbates their asthma or their nasal symptoms or both and can result in hospitalisation.
In severe cases of AERD, salicylates (related to aspirin) in the diet can also produce the same adverse effect. Significant relief can be achieved with a course of oral corticosteroids (prednisolone) but symptoms return soon after ending treatment, which ideally should not be extended due to the inevitable side effects of high blood pressure, high blood sugar and thinning of the bones.
Long-term use of topical steroids (inhaled spray/powder for asthma and nasal spray to control polyps) is the typical treatment for those with the condition, which avoids the side effects since very little of the drug is absorbed into the body beyond the nose and lungs.
In some cases, a low salicylate diet (as documented above) can help, but can be difficult to follow. Aspirin desensitisation is another possibility, but has to be done under medical supervision since adverse symptoms must be monitored and controlled, as otherwise these could be severe.
Advice on aspirin intolerance can be found on the Allergy UK website: