I have Alpha-gal syndrome (AGS), which I think as a feminist is probably quite apt! But jokes aside, it’s a scary ride!
I’m an outdoors person, always have been – I live rurally, was involved in outdoor education, am an avid camper, grow my own vegetables, and have always had dogs. I love nature and being outdoors – it’s my happy place. I had also always been a vegetarian but started to reintroduce meat to my diet when I met my now husband in 2012. We were married in 2022, when I was 55 years old.
Karen Hunt
A Lyme disease diagnosis
In 2018 I was working for a friend who lived on the edge of the New Forest, and looking after his nine rescue dogs. Just before Christmas 2018, I noticed something on my belly as I went to get in the bath. I tried to brush it off but it didn’t move.
On closer inspection I saw that what I thought was a speck of wool fibre, was actually attached to me and had legs! Having always been around dogs I was aware of ticks but this wasn’t like anything that I had seen before. So I pulled it off anyway, making sure all of it had come out and carried on with my bath.
The next day I noticed that the area on my belly where the tick had been was raised and angry looking, so I made an emergency appointment at my GP practice. In the interim, I had a bath and noticed the bull’s-eye rash around the raised area on my belly. This only really showed up when I was in the bath and faded as soon as I had cooled down. Subsequently, the doctor gave me a ten day course of antibiotics for Lyme disease. I took them over Christmas; they were grim and I felt nauseous throughout. I eventually finished the course and life carried on.
Early symptoms of Alpha-gal syndrome
Over the next couple of years I started to notice that on the very rare occasion that I ate beef, lamb or bacon, I started to get really bad belly pains later in the day. So my very brief foray into meat eating didn’t last. I thought that because I had been vegetarian for so long, my body just didn’t want to accommodate meat. I still ate cheese and drank milk at this stage.
In 2023 I decided to try and get fitter and joined the gym. After about six months of being more active I started to notice that I didn’t seem to be able to stomach cheese or chocolate particularly well. Whenever I ate them, a few hours later I would have really bad stomach pain and diarrhoea.
At the time, I believed this to be the menopause and that maybe I had become lactose intolerant. So I decided to become vegan. Here is where my problems really started. I noticed that certain vegan milks and creams caused what felt like fireworks in my belly a few hours after consuming them and I really couldn’t understand why.
I also had insect bites that just wouldn’t heal. Despite every remedy I knew, they still oozed and remained angry.
Severe allergic reactions
One particular day my daughter brought home some vegan tuna and made me a lovely salad with it. She then went out for the evening and my husband was also away. After about two hours I had the most intense pain in my belly. It felt like I was being stabbed and I was doubled up in pain. I made it to the bathroom and had the most awful diarrhoea and vomiting I have ever had.
I’ve had sickness bugs and food poisoning before, but this wasn’t like that – this was relentless. I started to get short of breath and found myself empty, curled up on the bathroom floor with short rapid breaths. I lay like that for a few hours and then made it to my bed. My breathing was still rapid but I eventually fell asleep. The following morning I felt awful. I felt like someone had pumped lead in to my veins and I was so tired. I didn’t make the connection with the vegan tuna. Why would vegan food be making me ill?
About a month later I ‘treated’ myself to another vegan tuna and mayonnaise sandwich. Exactly the same thing happened, only this time my husband was home. I ate it at 8pm and went to bed around 10pm. After about an hour I woke to the same awful pain in my belly and rushed to the bathroom. Eventually the sickness stopped and again my breathing was rapid and short. I made it back to bed and something clicked in my brain. I thought maybe the shortness of breath was something to do with an allergy and so I took a Claritin tablet. After about twenty minutes my breathing eased and I fell asleep. I didn’t know what the allergy was to, but never ate vegan tuna again.
Diagnosing Alpha-gal syndrome
By late summer 2024, I was feeling awful. I didn’t seem to be able to eat anything without being ill and I was really bloated and looked ghastly. My husband is an avid Radio 4 listener and he came home from work one day and said that he had heard a short clip about a man in Scotland who had a life-threatening allergy to meat.
The allergy was to alpha-galactose and he had Alpha-gal syndrome as a result of a tick bite. After a few days listening on repeat, I realised that it all sounded so similar to everything that I had been through over the last six years. I went to my GP surgery and asked to have a specific allergy test for alpha-gal. At first they dismissed me and said that it was so rare that I couldn’t possibly have it. But I kept on and eventually after three attempts saw a young, newly-qualified GP who had a little knowledge of Alpha-gal syndrome. He agreed to send me for an IgE blood test.
Lack of support after diagnosis
On the 21st December 2024 I received a letter from the allergy centre stating that I had tested positive and that I had to carry EpiPens and to collect them from the chemist ASAP. There was no real explanation other than this and I just felt really scared. The helpful, newly-qualified GP phoned me the next day and apologised – he had genuinely thought that I would test negative. He was so shocked that I was positive as the condition was so rare. He said to avoid red meat but when I tried to explain that I didn’t eat it yet was still having reactions, he couldn’t understand why. I received no further advice.
I collected my EpiPens the next day then it was Christmas, the biggest meat and cheese festival known to man! I had no clue what to do, what to avoid or how to get through Christmas. I was terrified! I remember for Christmas dinner 2024 I had a plate of vegetables and felt very stressed. I sort of stumbled along for a few weeks in a daze. I tried to make an appointment to see that young doctor again but found that he had only been there temporarily and had left the practice. I was left in limbo. The information had been uploaded onto my NHS record – I could see on the app – Alpha-gal syndrome, severe allergy, carries EpiPens. But nothing else. So I did what I knew and started researching.
AGS patient community offers support
I found an AGS support group on Facebook which had 92 members, most of which were in the USA, but some were in the UK. So I posted on there, ‘Help me, I’ve just been diagnosed with Alpha-gal syndrome and I have no clue what to do. I’ve only been told to avoid red meat which makes no sense as I’m vegan and ill’.
I received lots of supportive comments and loads of messages from other people who were in the UK with AGS. I was told by the support group that exercise is a bad move for the AGS community as it ‘kick starts’ more severe reactions. The AGS community told me about carrageenan in vegan foods and how this is the only non-mammalian thing that contains alpha-gal. It is used in most vegan foods as a thickener. I had a light bulb moment! That explained why I had been so ill on vegan food. So I had to have a complete rethink of my diet.
I discovered from the AGS community that I could eat meat that was non-mammalian – chicken, fish, duck, ostrich!! So on we went with them. I grew organic vegetables in our garden and my husband, who loves cooking, adapted recipes to suit my needs. I thought we had it cracked.
Managing severe allergy
We couldn’t really go out to eat as that seemed far too complicated. We did try to eat out on two occasions. The first time I asked for the allergy menu in a café and it took the woman so long to upload it to her tablet that the queue growing behind me became annoyed – so I just had a glass of water whilst my family ate. The second time I went out to a café for breakfast and the only thing I felt safe to eat was dry toast. I told the waitress that I had allergies and so when my toast came out it had a massive red flag on a cocktail stick stuck in it. The flag was bigger than the toast! It was quite funny but embarrassing as it unnecessarily drew attention to me.
Managing high cholesterol
I called in to an NHS drop-in centre in February 2025 and had my cholesterol taken. It came back as 5.1 and I was told this was a little high. So I came home and did a little research and tweaked my diet, replacing white crusty bread with wholemeal bread and introducing avocados. I went back in August 2025 and my cholesterol was 3.7. I was delighted, thought I had everything under control and was so pleased. I had lost my fear and felt more confident in moving forward. Alpha-gal wasn’t going to beat me!
Hidden dangers in medication
Then in September 2025 I tore a muscle in my back. I went to see the nurse at the GP practice and was told to use freeze spray and take ibuprofen or Voltarol, which I did. My back did get better after about a month but soon after my husband and I both caught either Covid or a really nasty flu virus. I got better after two weeks but my husband didn’t seem to.
He went to the GP surgery and was told that he had a chest infection and was given a course of antibiotics. I was still taking ibuprofen as my knees had started to hurt and felt stiff. Over Christmas 2025 my husband didn’t recover and needed another course of antibiotics. My knees got progressively worse and the issue was spreading to my hips. I was taking Voltarol, paracetamol and ibuprofen all day. I thought maybe I had Long Covid and it would get better, but it didn’t.
The financial impact of AGS
Both my husband and I are self-employed and so with me immobile due to my knee and hip issues and him having a chest infection, we didn’t really manage to get any significant work done over a two month period. I was very stressed about this from a financial perspective and wasn’t sure how we were going to manage.
A higher risk of heart disease and stroke
I had to go for a routine Well Woman appointment at the GP surgery in January 2026 (pulse, BP, cholesterol, weight, and lifestyle checks). I had my blood taken and on 30th January 2026 I went for my results from the practice nurse – BP 125/72, pulse 60, slightly overweight, but my cholesterol was 6.5!
“How can my cholesterol be 6.5?,” I asked, slightly incredulously! The nurse gave me a list of foods to avoid that caused high cholesterol like red meat, cheese, milk, cake and processed foods. But I didn’t eat those things! How could my cholesterol have gone from 3.7 in August 2025 to 6.5 in January 2026? The nurse had no clue but told me that my QRISK was 9 – a 9% chance of having a heart attack or a stroke over the next ten years!
I came out of the GP practice and did a quick Google search to see if there was a link between Alpha-gal syndrome and high cholesterol. The answer horrified me – there was a huge risk!
A 2018 study on AGS by the University of Virginia supported by the National Institute of Health (NIH) found that patients with alpha-gal antibodies had 30% more plaque build-up in their arteries than those without the sensitivity. They found that crucially these plaques were found to be structurally unstable or soft, meaning that they have a much higher likelihood of rupturing and causing a heart attack or stroke.
The alpha-gal molecule is a complex sugar that often binds to lipids (fats). When you eat mammalian meat or dairy, alpha-gal molecules enter your bloodstream ‘hitchhiking’ on chylomicrons and LDL (bad) cholesterol particles. As the alpha-gal carrying cholesterol particles settle in your artery walls, your IgE antibodies attack them. This causes chronic, low-level inflammation specifically within the artery lining. This constant immune ‘battle’ prevents the plaque from hardening and stabilising, keeping it soft and vulnerable.
The emotional impact of AGS
I read this and immediately sent a message to the GP, but the response simply stated that there was no special advice for those with AGS. It was the same as for anyone with high cholesterol – don’t eat red meat, don’t smoke, don’t eat processed foods, and do lots of exercise.
I drove home and cried. I was sitting there with a time bomb in my arteries, with severe pain in my hips and knees and being told to exercise. All I had next was a distant doctor’s appointment with a GP I had never met before. I was really terrified of something happening to me before that meeting, and didn’t know what to do to calm myself except research.
Understanding Alpha-gal syndrome
I discovered that Ibuprofen, Voltarol, stress and Covid all act as co-factors and make AGS reactions worse by lowering the body’s threshold for a response (NIH 2024). Although I had tolerated small amounts of mammalian products before, I no longer could as a result of Covid, stress and taking anti-inflammatory drugs. Following more research I was horrified again – mammalian products exist in nearly everything!
- Gelatin – found in sweets, marshmallows and even some yoghurts. Made from mammalian bone.
- Whey, lactose and casein – often hidden in seasoning packets.
- Carrageenan – that nasty seaweed! I knew this one!
- Natural flavours in chicken or turkey products – often derived from beef or pork stock.
- Magnesium stearate – the shell coating of most medications, used to bind the contents of some medications together. Including paracetamol and the multivitamins that I took daily.
- Glycerin – used to keep foods moist, sometimes vegetable based but also can be a mammalian product.
- Mono- and diglycerides – emulsifiers found in bread or snacks.
- L-cysteine – used in bread and sometimes derived from mammalian hair.
- Bleached sugar – some white sugar is processed through bovine bone char.
- Filtered water – some is filtered through mammalian bone char.
So what could I eat? Some of it isn’t even labelled! White sugar for example, doesn’t mention on its list of ingredients that it’s been washed through ground cow bones. At this point I thought my life was just going to become a life of eating apples!
Alpha-gal syndrome and joint pain
Next I researched chronic knee pain and AGS. A landmark 2024 study on AGS published in JAMA Network Open found that individuals with high levels of IgE antibodies reported significantly higher rates of knee pain, aching and stiffness. The higher the IgE level, the worse the pain. Though it is still being studied, the research suggests that when you ingest alpha-gal it can cause mast cells and basophils to degranulate, releasing inflammatory chemicals that can cause arthralgia (joint pain).
Living with Alpha-gal syndrome
It made sense to just stop the alpha-gal molecule from entering my body and triggering my body’s defence mechanism to it. My poor body was under constant attack so we had a massive clear out. I worked out that as long as vegan products didn’t contain carrageenan then they are safe for me. We now buy everything vegan – coconut milk for curry, tomato sauce, toothpaste, shampoo, conditioner, washing up liquid, you name it.
Shopping is interesting as the things that I am allergic to don’t come in the top ten list of allergens and are not listed in bold, so we have to read each ingredient list carefully. Shopping takes such a long time.
I can eat chicken, turkey and fish so we have found that turkey mince is quite versatile for dishes like bolognese, chilli, cottage pie etc. My husband has been making curries on the weekend with chicken. He makes his own sauces as he is a good cook.
I’ve taken a couple of weeks off work to rest and help my body heal. The finances are a little more stable now as my husband is better and has lots of work so that eases our position a lot.
I’m drinking 6 pints of water with a dash of ginger juice every day. Staying well hydrated helps me maintain healthy blood flow, cholesterol levels and arterial health. My chronic, almost disabling knee pain has almost gone. My thighs are looser and my muscles aren’t cramping all the time. I feel very tired as, from what I have read, my body has now switched off the need to be in defensive mode all the time. I still have to walk my dogs but this is a leisurely activity and I can take my time with it.
I have yet to see my doctor. I am a little nervous as I know that the likelihood of her having read as much as I have about AGS is slim. I’m now hoping that in another four weeks I can have my cholesterol taken again and levels will have improved.
My top tips for managing AGS
- Another tick bite would be bad! Tick bite prevention is key.
- My dogs need to be brushed down every time before entering the house after a walk, and have to regularly take tick protection.
- Removing the source of the problem is a must – alpha-gal cannot enter my body again.
- Staying well hydrated is important.
- Reading labels and avoiding all hidden triggers is a necessity.
- Avoiding Covid, where possible, would be a good move.
- Never take ibuprofen and Voltarol as it makes things worse.
- It is ok to know more than my doctor – I must do whatever I can to keep myself safe!
Learn more about Alpha-gal syndrome.