Alpha-gal allergy: Simon’s experience

Simon Jones would describe himself as a fit and healthy person who enjoys playing golf, cycling and swimming in the sea with his family. As a landscape manager from Kinghorn, Fife, Simon spends a lot of his time outside managing gardens throughout the West Coast of Scotland.

After several months of unexplained symptoms and a serious reaction to haggis on Burns Night, Simon knew something was wrong.

Simon’s experience

My journey began back in summer of 2021 when I started noticing hives that I couldn’t explain. Over 8 months the episodes got progressively worse often resulting in vomiting. Although I didn’t know it at the time, the frequency of these reactions was consistent with eating meat.

Due to the nature of my job I get tick bites but only three or four each year. I did notice that they were not healing properly but as they didn’t show the bullseye symptom for Lyme disease, I didn’t pursue it with my GP. This all came to a head in January 2022 when, as is the custom in Scotland, we had a haggis for our Burns supper. Three hours later I had hives from head to toe, face swelling, vomiting and difficulty breathing.

Being stupidly stoic I didn’t call 999 but took a double dose of antihistamines and that eased the swelling and itching. I basically rode out the next 12 hours of discomfort. After this though, it was time to get help and I contacted my GP who didn’t know what was wrong but gave a me a course of antibiotics for Lyme disease. I had bloods taken to check liver, kidney functions etc.

Diagnosis was relatively easy, and I thank my wife who did all the research. It was she who thought it was alpha-gal allergy. I then contacted my GP, gave them a load of information and was insistent that I be tested for Alpha-gal. Once I was diagnosed, I was told to avoid meat. I got my adrenaline auto-injectors (AAI) and antihistamines that have no animal byproducts or dairy. To be honest, that was it. There was no real support because of the rarity of the condition, at the time I was told there were as few as 4 people in Scotland with it, but I now know it is around 18.

Coping with alpha-gal allergy

This is a life changing condition, not because of the rarity but in the way it changes through time in response to tick bites and exposure. I have had periods in which I react to fumes from meat and pizzas cooking at home, although doctors have told me several times that that is ‘in my head’. This latter point is not helpful and makes living with it very difficult.

I have to avoid most public places (café’s, cinemas, restaurants) due to the various ways I can be exposed. This means that social interactions are severely limited and when one thinks about how we interact with friends and family, it is normally centred around food.

Due to this increase in perception of danger the mind then goes into a state of fight or flight. I never truly understood what that meant but when you walk into a situation of danger the mind overwhelming makes you leave and get to an area of safety – a very strange experience.

I carry AAIs (Adrenaline Auto Injectors) and use antihistamines to control symptoms when I feel a reaction coming on. My main symptoms are gastrointestinal related and for a minor reaction to dairy which will last around three days I have a constant feeling of nausea and hunger along with lethargy, confusion and irritability. I am not an easy person to live with at the moment!

Final words from Simon

Everything Anaphylaxis UK and the NHS are doing in terms of raising awareness and understanding is fantastic. I would encourage organisations to engage with all diagnosed cases to carry out case studies. Patients can provide clear anecdotal accounts regarding the variability of the allergy. We also need a clearer understanding of the allergy pathway; for example, you would think that food labelled as ‘vegan’ would be risk free, but it is not. An emulsifier called Carageenan, which comes from Irish moss seaweed, is the only plant to carry the Alpha-galactose sugar – something I found out the hard way. Vegan or vegetarian options in restaurants could also be contaminated with meat from cooking processes nearby.

Read Anaphylaxis UK’s new Alpha-Gal Factsheet