Val Smith was on a river cruise in France when she woke up in the early hours of the morning feeling incredibly itchy on her arms, torso and legs. “I suffered,” recalls the former family support worker from Holbury, Hampshire.
“I couldn’t sleep, so I walked to the main lounge of the ship and sat there all night itching. I kept thinking, what could have caused this?
This wasn’t the first time her skin had reacted this way. A few weeks ago, Val, now 74, went to bed feeling very unwell. “I woke up itching and felt like I had been bitten by 1,000 mosquitoes,” she says. Her body was covered in hives and welts, so she took antihistamines. “It was gone the next morning.”
A week later, the same thing happened again early in the morning.
It turned out that since the third cruise in 2018, we had eaten beef that night every time.
She searched online and found posts about alpha-gal syndrome, a condition caused by tick bites that causes an allergy to red meat. Val instantly remembered the time she was bitten by a tick seven years ago.
At the time, Val and her husband Les, now 82, had just moved to the New Forest to be closer to family. “My grandson and I built a den, and the next day I noticed a small red mark the size of a mosquito on my knee.”
The bite grew larger, causing swelling that was “large, round, and red, like a kneecap,” she said.
Val Smith, 74, has alpha-gal syndrome. This condition is caused by a tick bite and is an allergy to red meat.
Several months later, the stab wound was still swollen, but he went to see his GP. Doctors sent her to a local hospital to be tested for Lyme disease, an infection caused by ticks that carry the Borrelia bacteria.
If treatment (usually antibiotics) is delayed or untreated, it can cause joint pain, memory loss, and other debilitating symptoms. Tests confirmed that Val had Lyme disease.
What she didn’t realize was that the infection not only caused swelling in her legs, but also triggered an immune response called alpha-gal syndrome (AGS). AGS is a meat allergy caused after being bitten by an alpha-carrying tick. -Gal is a type of sugar molecule found in saliva.
In response, some people develop antibodies against alpha-gal, and “in this case we refer to them as ‘sensitized’,” says the immunologist, consultant allergist at Derriford Hospital in Plymouth. Academic Andrew White explains:
“Alpha-gal molecules are also present in the muscles of all mammals except humans and most primates, so sensitized people can react to alpha-gal if they eat red meat.”
He said AGS is “completely unrelated” to Lyme disease, which is “an infection, not an allergy.”
The Centers for Disease Control and Prevention announced in July that more than 110,000 people in the United States tested positive for alpha-gal antibodies between 2010 and 2022, but the actual number is 50. It is thought that there are close to 10,000 people. Cases are increasing.
Although there are no statistics in the UK, Dr White says: “It’s probably more common than we think because the diagnosis is often missed, but specialists are seeing more cases.”
He added: “The onset of AGS after a tick bite is often 4 to 6 weeks, but in some cases it can take several months, for unknown reasons.” Of course, the very long delay If so, you may have been bitten by a tick and didn’t realize it. ”
Another characteristic of AGS is that symptoms are delayed several hours after eating red meat. “Allergic reactions usually occur within an hour after eating.” [the food that causes it]However, AGS often takes up to four to six hours,” says Dr. White.
In Val’s case, the reaction occurred after about seven hours.
Dr. White said AGS is most common in the southern and southeastern regions of the United States, where a particular tick called the Lone Star is “the source of alpha-gal transmission to humans.”
It has also been reported in many other countries, added Professor Hasan Arshad, professor of allergy and clinical immunology and clinical laboratory science at the University of Southampton.
Symptoms of AGS can range from mild, such as a rash and swelling, to severe, such as difficulty breathing and anaphylaxis, which can cause blood pressure to drop dangerously and lead to organ failure. “However, it is quite possible that someone who is sensitized to alpha-gal will not respond or show no clinical symptoms,” Professor Arshad said.
Alpha-gal syndrome is a condition caused by a tick bite that causes an allergy to red meat
Alpha-gal is primarily found in “mammalian” meat (not chicken) and organs (such as kidneys), but milk and gelatin may also contain alpha-gal, he explains. “So drugs and vaccines, even mammalian cells and tissues, or even sweets that contain small amounts of gelatin, can cause a reaction in some cases.”
He added: “People with blood groups A and O are reported to be at increased risk, while blood group B is protected.” This is because people with blood types A and O have antibodies that react with alpha-gal, he explains.
When people with AGS eat red meat, their response may be delayed if they eat fatty parts rather than lean parts (because fat takes longer to digest).
Many people with AGS “have mild symptoms and may never have been diagnosed,” Professor Arshad added. “And some patients may have severe symptoms and suffer from anaphylaxis, but their anaphylaxis is diagnosed as idiopathic.” [without any discernible cause] You don’t associate it with meat because the reaction occurs several hours after ingesting the food.
“About 30 percent of people who have anaphylaxis have no identified cause,” he says.
Professor Arshad added: “This condition is rare and allergy as a subject is not well taught in medical schools, so diagnosis is often delayed.” However, if AGS is suspected, diagnosis is “relatively easy” with a blood test performed by a general practitioner.
After the cruise, Val went to her GP and was told that she was probably suffering from heat rash. “It wasn’t until I got home that I realized I should have told him about AGS, so I called him and asked if he had heard about it.”
Her doctor replied: “It didn’t happen in the UK.” In fact, the condition was first identified in the US in 2002, but the UK is now among many other countries where the disease has been found.
“Although the Lone Star tick is the primary cause of AGS in North and Central America, other species may be involved in other parts of the world,” Dr. White said.
Val continued to eat meat, but noticed that she was starting to have reactions even when she ate “pork, sausage, bacon, anything that has four legs.” she says. “The skin reaction will get worse and worse.”
In late 2018, Val insisted that she be referred to an allergist. Blood tests showed she had grade 4 AGS. This means she is “strongly positive” for it (the scale goes from 1 to 4, which is “ambiguous”). “This explains why I react so badly every time,” she says.
She was referred to the hospital’s immunology department, where she was warned that the reaction could get worse and prescribed an EpiPen, an adrenaline-infused device to suppress severe allergic reactions.
She was told to avoid all red meat. “This applies to everything in mammals, including gelatin and fats. So many foods contain these, including certain sweets, desserts, toothpaste, and even vaccines, so we need to be especially careful. .”
Professor Arshad explains: “There is no cure for alpha-gal syndrome, so those affected must strictly avoid meat.”
He said life can be difficult for people with severe allergies. “Even small amounts of meat or inhalation of smoke from cooking meat can cause a reaction, as you can inhale airborne alpha-gal molecules.”
Val added: “Hotel buffets can be very difficult because there can be cross-contamination from spoons and utensils and you have to check all food labels.”
“I thought the idea that ticks could cause all this was ridiculous and crazy. I hope my story will raise awareness that AGS is here in the UK.”
