Alpha-gal allergy: how tick bites changed my life

Alpha-gal allergy: how tick bites changed my life

  • 11 December 2023
  • Healthcare News
  • News

By Christopher Goldman

I knew something was wrong when I woke up at 3am, burning hot and itching all over. I went to the bathroom and saw my skin was crimson red and covered in hives. My face and tongue swelled, my throat constricted and I collapsed. When I came around, I struggled to breath or move and just lay on the bathroom floor for almost an hour, thinking I was going to die.

When I was able to, I phoned 111 and was advised to go to A&E but staff there just told me to go home and buy antihistamines. They said testing for allergies would be pointless because the results take a long time to come back and can be inconclusive, so I was left in the dark about the cause of my anaphylaxis.

Chris pictured with his partner, Shelley. 

I continued to feel unwell for the next couple of days: my skin was burning, my heartbeat was irregular and much faster than normal, I was struggling to breathe easily, and my tongue felt strange. Two days later, I collapsed again. When I went to my GP to discuss the possibility that I was having allergic reactions, I was referred for tests. Terrified of having another reaction, I insisted on being given an adrenaline auto-injector.

While waiting for tests, my symptoms persisted and I began doing research to understand anaphylaxis and what could be causing it. I came across information about tick-borne illnesses which stood out to me as I’d recently been bitten by ticks while dog-walking near my home in Woking, Surrey. I learned of a seemingly rare condition called Alpha-gal allergy (also known as Alpha-gal Syndrome or AGS): a tick-borne illness that makes people allergic to the sugar molecule or ‘alpha gal’ found in mammals – except humans. I hardly ever eat meat, but quickly realised that both episodes of anaphylaxis had occurred hours after eating red meat!

After fainting many more times and still having trouble breathing, I was admitted to hospital. I spent days explaining my symptoms and what I’d read about alpha-gal allergy to doctor after doctor, none of whom seemed convinced I could be allergic to meat. Eventually I was seen by a consultant but they too had never heard of alpha-gal allergy; they ordered blood tests but did not tell me what they were for, then discharged me. Feeling disappointed that nobody had taken my concerns about the tick bites and allergy seriously, I booked a private blood test and the results confirmed I have the allergy.

Alpha-gal allergy has made me allergic to all mammal products and by-products, including red meat and dairy, but also household products and toiletries that contain ingredients like gelatine, lactose or glycerine. Most concerningly, many medications (including antihistamines) contain these products.

Not everyone with this condition will react to all mammal products but I seem to be highly sensitive, even to airborne alphagal such as fumes from cooking meat. Doctors have told me that fume reactions are not real and my symptoms must be caused by anxiety, yet so many people with AGS across the world report allergic reactions to airborne alpha-gal. Are we all imagining it – and so convincingly that it makes us faint, swell, flush, itch, collapse, stop breathing? I don’t think so, but I’m too drained to keep fighting to be believed.

After seeing a private specialist, I learned that I have also developed Mast Cell Activation Syndrome (MCAS) as a result of alpha-gal allergy or the anaphylaxis. This is a chronic, incurable condition that makes my body hypersensitive to all sorts of things. Anything from exercise to a change in temperature or the smell of detergent can trigger an overwhelming response as my mast cells go into ‘panic mode’ and release loads of histamine and other chemicals. Unfortunately, MCAS (like alpha-gal allergy) puts me at risk of severe allergic reactions including anaphylaxis. Worst of all, most of the medications used to manage MCAS symptoms contain animal-derived ingredients which are obviously unsafe for me.

Formerly a fit and healthy 28-year-old, I now have two life-altering conditions, both of which are poorly understood by healthcare professionals and the public. I’ve been disbelieved and dismissed time and again when seeking help, because most doctors in the UK have little to no knowledge of alpha-gal allergy and many have told me it must be ‘in my head’. Anyone can be bitten by a tick and be unlucky enough to contract this allergy, so I want to raise awareness of the condition and the devastating impact it can have on people’s lives.

My family and I have started a petition to urge the Government to include alpha-gal allergy on the NHS website and in NICE guidelines, to make alpha-gal an allergen that must be declared on food labels, and to fund much-needed research into this allergy in the UK.