Alpha Gal Syndrome is a life-threatening allergy to the sugar molecule (alpha gal) found in all mammals but humans and primates. It's transmitted through tick bites. 

Far from just needing to stop eating red meat, sufferers may have to avoid a huge range of products containing alpha gal, including toiletries, cosmetics, cleaning and household products, certain loo rolls, and medications. So many things contain ingredients derived from, or made using, mammal parts. Did you know white sugar is often processed using animal bone char and many toothpastes contain animal fat derivatives?! For some people who are fume reactive, even the smell of cooking meat can trigger severe allergic reactions. 

 

 

 

 

I would love to be able to direct you to a source on the NHS website about Alpha Gal Syndrome, but no such information exists. This condition is poorly understood by medical professionals. Globally, it takes on average 7 years for someone to be diagnosed with this condition. This causes years of unnecessary suffering and, worst of all, avoidable deaths. We need your support to raise awareness and understanding, especially as experts suggest the condition may be on the rise as a result of warming climates encouraging more ticks.

• Update: Tick-Borne Conditions United hosted an excellent Alpha Gal Syndrome Symposium in February 2024, sharing the latest research and evidence from experts in the US. You can watch the recording on their website. 
• Update: in October 2023, the charity Anaphylaxis UK launched an evidence-based factsheet about Alpha Gal Syndrome. They shared it at the 2023 British Society of Allergy and Clinical Immunology (BSACI) conference, using my brother's story as a case study. 

Latest news on Alpha Gal Syndrome:

• iNews: Alpha-gal syndrome: 'A tick bite gave me a meat allergy - I had anaphylactic shock after eating a burger'
• Sky News: Man left housebound by potentially deadly meat allergy triggered by tick bites (my brother's story)
• Independent: What is alpha-gal syndrome, the meat allergy caused by a tick bite?
• BBC News: Alpha-gal syndrome: Meat allergy linked to tick bites rising, CDC says
• Mail Online: Now tick bites spark a deadly meat allergy - and even the SMELL of sizzling bacon can trigger a reaction including itching and breathing difficulties

How does Alpha Gal Syndrome affect people?
People with this allergy cannot consume mammal foods (mostly red meat). Many also suffer allergic reactions to dairy and products containing mammal-derived ingredients like gelatine or glycerine. And the unluckiest ones are those who are also sensitive to airborne alpha gal, meaning they experience allergic reactions when they so much as smell cooking meat or dairy or come into contact with fat particles in the air. 

Alpha Gal Syndrome can cause a wide range of symptoms, many of which defy commonly held beliefs about how allergies work. For example, reactions often come on hours after exposure - making the cause difficult to identify. Symptoms can include anaphylaxis, hives and swelling, gastrointestinal issues, drop in blood pressure and loss of consciousness, rapid heartbeat, and neurological symptoms.

Very little is known about Alpha Gal Syndrome, so getting diagnosed and referred to the right specialists is tough. Often, patients encounter scepticism, disbelief and dismissal along the way, and are told their very real symptoms must be 'in their heads'. Because medical staff are often unaware of Alpha Gal Syndrome or the possibility of being allergic to mammal products, sufferers like my brother are commonly left to do their own painstaking research into diagnosis and treatment.  

• Update: we've learned that tick bites and/or Alpha Gal Syndrome (as well as Lyme disease and other infections) can trigger secondary Mast Cell Activation Syndrome (MCAS), as it has in my brother's case. Check out the work of Mast Cell Action to learn more. MCAS is also poorly understood at present, and not yet recognised by the NHS - despite estimates that it affects 17% of the population and is hypothesised to be linked to Long Covid.

Dr Tina Peers on MCAS and Long Covid:

 

 

 

 

My brother's story
My brother, previously a fit and healthy 28-year-old, contracted Alpha Gal Syndrome from a tick bite in suburban Surrey, England. Secondary to this, he has developed Mast Cell Activation Syndrome. Managing both conditions is an hourly struggle.

He is extremely limited in where he can go and what he can do, as simple activities like getting on the bus, going to work, eating at a restaurant or doing grocery shopping all carry the risk exposure, and this could cause an AGS or MCAS reaction including anaphylaxis. His life is sustained by a handful of plant-based foods and products, and isolation from the outside world with its array of allergens and triggers. 

 

 

 

 

Our fight for diagnosis and treatment
Back in June 2023, after going into anaphylaxis, fainting multiple times, and experiencing terrifying symptoms like trouble breathing, a racing heartbeat and burning skin, my brother was taken to hospital. He explained that he'd come across Alpha Gal Syndrome when researching his symptoms and asked to see an allergy specialist or to be tested for it. A simple blood test can detect the allergy, but nobody who assessed my brother had heard of Alpha Gal Syndrome and would not even consider transferring my brother to the Immunology department. 

He was tested for a range of other things, then discharged with no further investigation or treatment. Had he not done his own research, he would have carried on eating meat, brushing his teeth with toothpaste containing animal-derived glycerine, applying non-vegan moisturiser to his skin, going to restaurants and other public places…any of which could have caused a life-threatening reaction.

• Hear my brother's story in his own words on Sky News.

We decided to pay for a private blood test which confirmed my brother has Alpha Gal Syndrome, caused by a tick bite. Then started the battle to find a specialist who knew about the condition and would help my brother manage it. This battle has continued for nearly a year and, despite our efforts, we've received no support from our GP practice, A&E, or Allergy and Immunology departments. Everyone we've seen lacks knowledge of (or interest in learning about) this emerging health threat, and has chosen to dismiss my brother's allergy symptoms as "anxiety" and his anaphylactic shocks as "panic attacks"...in spite of numerous positive tests for Alpha Gal Syndrome and associated immune conditions like MCAS. 

Urgent action needed to save lives
Right now, the world is not a safe place for people with Alpha Gal Syndrome. Hospitals are not safe because staff don’t know how to identify the allergy or protect those who have it from exposure. And every public space is suffused with foods, products or fumes containing traces of mammals. Diagnosis and understanding of this condition are vital because, without it, sufferers are at risk of being given medications containing mammal-derived ingredients which, especially if administered intravenously, could be deadly. And, as if living with this serious allergy weren't enough, we now know that it commonly triggers other conditions that affect every system in the body and make daily life difficult and dangerous - like MCAS. 

We want to raise awareness of Alpha Gal Syndrome among the medical profession and the public. Fascinating research and information are out there, and I've listed some useful sources below. But it should not be the job of people with this condition, who are often very ill, to diagnose themselves and navigate the complexities of this syndrome - then fight to be taken seriously when they seek healthcare. It is not acceptable that people reporting symptoms of this allergy are being dismissed, disbelieved and neglected by our public health services. Currently, there is no cure but symptoms can be managed to a degree. 

Please sign and share this petition to help us: 

1. get Alpha Gal Syndrome on the NHS website and in the NICE guidelines
2. push for much-needed research so medical professionals have a greater understanding of the condition and how to diagnose and treat it 
3. demand that alpha gal is recognised as an allergen which must be clearly stated on food and product labels.

 

 

Useful sources of information about Alpha Gal Syndrome
Below is a list of resources from the UK and US. Please take a look if you'd like to know more about this allergy and how it's being managed in different parts of the world. If you're affected by Alpha Gal Syndrome and/or Mast Cell Activation Syndrome, there are also a number of support groups on Facebook. 

• Factsheet from Anaphylaxis UK (published October 2023) 
• ZeeMaps: Where in the world is Alpha Gal? (Spoiler: not just in the US!)  
• How Tick Bites are Breaking the Rules of Food Allergy: presentation from Dr Scott Commins at Lyme Summit 2023
• Dr Scott Commins on Alpha-gal Syndrome and fume reactions 
• Alpha-Gal Allergy – with Dr. Scott Commins
• Alpha-Gal Syndrome Subcommittee Report to the Tick-Borne Disease Working Group
• Diagnosis & management of alpha-gal syndrome: lessons from 2,500 patients
• The relevance of tick bites to the production of IgE antibodies to the mammalian oligosaccharide galactose-α-1,3-galactose
• Tick Bite Linked to Red Meat Allergy
• The relationship between red meat allergy and sensitization to gelatin and galactose-alpha-1,3-galactose
• Investigation into the α-Gal Syndrome: Characteristics of 261 Children and Adults Reporting Red Meat Allergy
• Tick-Borne Conditions United
• Tick-Borne Disease Working Group: 2022 Report to Congress
• Alpha Gal Information
• Alpha-gal syndrome: an emerging cause of food and drug allergy
• Alpha-gal in frequent travelers: the alpha-gal story and the first UK case series
• Frontiers in Allergy: The a-Gal Syndrome and Potential Mechanisms
• Centers for Disease Control and Prevention
• UofL Dept. of Medicine Grand Rounds: Dr. Scott Commins (2022)