Around the age of 19, Linda Cerrone got her first real tick bite while living in Westchester County, New York. Though she had been a camper, backpacker, and girl scout growing up, she didn’t really know much about ticks.
“It didn’t heal correctly. I still have the scar from it,” Cerrone says.
Following the bite, Cerrone would wake up in the middle of the night in “full anaphylactic shock,” a severe and potentially fatal allergic reaction, with head to toe hives, gastrointestinal (GI) issues, blood pressure drops, and passing out.
Though Cerrone didn’t know exactly what she was experiencing, she naturally started to avoid foods that triggered her symptoms.
“I had 2 days in a row where I ate steak. And those were two of the worst reactions I’ve ever had,” Cerrone says. “I realized, oh my goodness, I think that’s what it is.”
As Cerrone got older, her response to certain foods became more severe.
“I got married and had my first child at the age of 30. Right after having her, all of the sudden, the allergies got significantly worse. I became much more sensitive.”
Sixteen months later, Cerrone had another child, and after his birth, her allergies continued to worsen. It didn’t help that she kept getting tick bites.
“I really was getting more exposed to the alpha-gal molecule in my system through the tick bites that cause extra sensitivity in me, and they now know that that’s true,” says Cerrone.
As Cerrone was searching for answers, the medical community still had yet to officially recognize her allergy. That wouldn’t happen until alpha-gal was finally formally reported in 2009, over 20 years after Cerrone’s initial tick bite.
Though Cerrone didn’t know it at the time, the allergic reaction she experienced is called alpha-gal syndrome, or alpha-gal allergy (AGS).
It’s a delayed allergic reaction that can occur after someone eats mammalian meat, mammal-based foods, or is exposed to other mammal-containing products.
Galactose-α-1,3-galactose (α-Gal), a carbohydrate found in mammals, causes the reaction.
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“Unlike almost all other known forms of food allergy, the symptoms of alpha-gal syndrome are delayed: Symptoms occur 2 to 6 hours after eating the allergen,” says Dr. Scott Commins, associate professor of medicine and pediatrics at UNC School of Medicine.
“Patients are literally fine until suddenly they develop symptoms that, because it’s been several hours after eating, appear to arise out of nowhere with no obvious cause or trigger,” explains Commins.
Commins shares that typical alpha-gal allergy symptoms may include hives, itching, redness, swelling (of lips, face, tongue), wheezing, trouble breathing, low blood pressure, and even passing out.
“In addition, there are patients who report isolated gastrointestinal symptoms (so absolutely none of the above), but instead have vomiting, diarrhea, and abdominal cramping [and] pain,” says Commins.
Besides ticks, Commins says that there are likely other causes of AGS, including chiggers, certain parasites, and stinging insects.
“Most published data suggests that a presence of pre-existing allergies does not make someone more likely to develop AGS. What appears to be predictive, however, is when a tick bite leads to a swollen, red, inflamed, itchy, slow to heal spot at the site of the tick bite,” says Commins.
According to a 2015 and 2016 study, about 2.9 percent of the American population has self-reported peanut allergies, a well-known allergy. In comparison, research suggests that about 3 percent of Americans have alpha-gal syndrome. In endemic tick regions, researchers estimate that alpha-gal sensitivity may range between 15 and 30 percent.
After the steak incident, Cerrone stopped eating red meat and noticed a significant difference in the way she felt.
She continued to eat dairy but eventually gave up cheese, milk, and yogurt while continuing to eat some dairy products like butter.
Since there was no medical guidance at that time about how to handle AGS, many of Cerrone’s choices were self-prescribed based on her own symptoms, along with the guidance of her allergist at the time.
“I went through years and years not knowing what it was and trying to raise my kids while having anaphylaxis all the time, always being sick with things like rashes and GI issues,” Cerrone says.
At the age of 32, Cerrone was told by her orthopedist that she had the arms of a 65-year-old, and he couldn’t figure out why.
“It ends up that when I ingest mammal, especially dairy, it causes systemic inflammation throughout my body, especially in my joints,” explains Cerrone.
Alpha-gal syndrome also caused Cerrone to have heart issues such as tachycardia, a condition that causes a person’s heart rate to be higher than normal, usually over 100 beats per minute (BPM).
By the time Cerrone’s youngest child was 3, she finally found an allergist who was able to recognize her allergies, but alpha-gal syndrome still didn’t even have a name yet.
“We called it a mammalian meat allergy. It had a funny name called ‘midnight anaphylaxis’ because with these kinds of meats it can take between 2 and 8 hours for you to have your reaction to it,” says Cerrone.
Cerrone explains that the delayed allergic reaction was a real confusion to doctors who were much more used to immediate allergic reactions. “That really threw them off. They didn’t know what to think of it,” she says.
To help manage her alpha-gal allergies, Cerrone has embraced a mammal-free diet. Although she does make allowances for poultry and seafood, everything else is strictly vegan.
However, navigating poultry and seafood can be tricky. “I really look for vegan products and then when it comes to meats, you have to be very careful with seafood and chicken because they inject them with things,” says Cerrone.
“Seafood, especially shrimp, gets injected with gelatin. The same thing can happen with turkey and chicken.”
Even the smells from certain foods can trigger Cerrone’s allergies. She notes that her reactions to them have included rashes around her eyes, blisters around her jaw, dizziness, brain fog, blood pressure drops, and tachycardia.
“Being out in public has become incredibly difficult when walking down the street in the neighborhood by restaurants and fast food places. Even grocery stores are places with landmines for me because they do a lot of cooking there,” says Cerrone.
Moving through places like these quickly, Cerrone carries an EpiPen with her — which she doesn’t use very often — in case of emergencies.
“Fume” allergies can be particularly isolating because it is difficult for those experiencing them to join in events and celebrations like Thanksgiving, Christmas, or weddings.
Not only that, but Cerrone describes how people can be afraid to invite those with alpha-gal syndrome to dinner because they don’t want to accidentally cause harm. This can result in loss of social connections.
“Traveling on a plane is not something that I can do because if someone opens up a sandwich I’m up in the sky for hours, and how am I going to get help?” says Cerrone.
Commins shares that, like Cerrone, people with alpha-gal syndrome typically start with avoidance of mammalian meat including beef, pork, lamb, venison, goat, and rabbit.
“If symptoms persist, then we move to dairy elimination followed by avoidance of gelatin (marshmallows, gummi), then personal care products (lanolin), thickening agents (carrageenan), then cooking fumes,” says Commins.
In addition, Commins adds that some patients need to eliminate cat and dog exposure. In Cerrone’s case, this was also true since she has been allergic to dogs and cats since she was a child.
“It can become even more specific such that products carrying the label ‘natural flavors’ are avoided,” says Commins. Even wines clarified with bone char may need to be eliminated.
Cerrone mentions that a lot of people with AGS really struggle with the changes. “You go through a grieving process, just like you lost someone that you loved, when you deal with it. There’s a lot of anger, there’s grief, there’s denial,” she says.
Cerrone takes Xyzal and Allegra (allergy relief medications) every day to help manage her symptoms, doubling up when things get bad. Unisom melts, a non-mammal over-the-counter aid that offers similar relief to Benadryl, provide another emergency option.
As Commins mentions, food allergies aren’t the only thing that people with alpha-gal syndrome have to be cautious about. Cerrone shares that paper goods like toilet paper and women’s hygiene products can be an issue because the process that makes them white may include filtering them through bone char.
Another thing that Cerrone has to watch out for is reactions to medications, both prescription and over-the-counter, since many medications contain mammal ingredients.
Two examples that Cerrone gives are that gelatin, which comes from cows, is used in capsules on the outside of medications, and magnesium stearate, which comes from pork, may be used as a filler.
Beauty products can be a problem too. “Glycerin, another item that comes from mammals, can be in so many of our beauty products, so I have to use vegan beauty products, vegan haircare, and just really be on top of it,” says Cerrone.
Product labels can be misleading, so Cerrone has a long list of ingredients to look, which includes lactose, calcium, and a variety of other things.
“Mono and diglycerides (emulsifiers) generally come from pork and bovine products, and that’s in almost every packaged product,” says Cerrone.
“Most people are very unaware of how much mammal is in our everyday products. There are so many things that I have to avoid. Flour and sugar, believe it or not, are generally whitened and filtered through bone char from cows. You have to find brands that don’t do that.”
Purchasing products that are safe for an alpha-gal allergy can be pricey. What might cost $200 at the grocery store for someone else could cost $350 for Cerrone.
“A loaf of bread is $7 or $8 for me. It becomes really difficult to keep a budget when you have to buy everything in this particular way,” she says.
About 6 months before the COVID-19 pandemic started, Cerrone’s fume reactions flared up and she had to begin wearing a mask.
Suddenly, after the pandemic hit, everyone was wearing masks, and it felt much more acceptable.
“People would really look at you funny if you wore them outside of the house, and that’s no longer the case,” says Cerrone.
It was almost like people were getting a little taste of what life can be like with alpha-gal because they were stuck at home and couldn’t go out and be social. But, as people take off their masks, Cerrone will likely continue to need one.
Supply chain issues have been a problem for Cerrone because it’s harder to find products without certain ingredients. Companies haven’t been as transparent about their sources, and there can be contamination with mammal-containing ingredients.
“My biggest problem with the pandemic is the issue with medication,” says Cerrone. “If I were to end up with a bad case, and I do have quite a few comorbidities and end up in a hospital, 95 percent of the medications that they would use would not be able to be used.”
Cerrone opted for the Johnson & Johnson COVID-19 vaccine for her first vaccine shot because it didn’t contain mammal ingredients.
When she got her Pfizer booster, Cerrone was concerned because many medical professionals aren’t familiar with AGS and how long it would take, should an allergic reaction occur.
“They expect you to react instantly, and then they’ll send you home if you don’t,” says Cerrone. She sat outside the emergency room for 4 hours after receiving the booster because in her experience the delay for a reaction could be 2 to 4 hours.
Though Cerrone didn’t feel so great for a few days after the booster, she didn’t wind up having any emergencies.
If you think you have alpha-gal, Cerrone recommends going to an allergist, but know that not everyone in the medical community is familiar with the condition.
Commins advises those whose symptoms seem to resonate with AGS to have a blood test for alpha-gal IgE performed.
If you can’t get a blood test, he recommends avoiding beef, pork, lamb, and other mammal-based foods for two to three weeks for a better understanding of whether symptoms are associated with eating red meat.
“There is no current treatment for AGS. The good news is that the allergic response often wanes over time and, if a person has no or few additional tick bites, many patients have the allergy resolve after 3 to 5 years,” says Commins.
“Unfortunately for many outdoorsy folks, the inevitable tick bite happens, and this tends to reset the clock, prolonging the time to resolution. Some patients never seem to resolve.”
There’s some promising news on the horizon though. “We are working on a treatment to help prevent the issue with additional tick bites in order to speed resolution,” says Commins.
“Be prepared to be treated like you’re crazy, but ask them for a blood test,” says Cerrone. “They finally came up with a blood test about 5 years ago for this, and it’s one of the few things that’s made it so that I’ve gotten a little respect. I can say to other people that I’m diagnosed by blood test.”
Cerrone shares that, to help with symptoms, some people with alpha-gal have tried an acupuncture technique called SAAT that’s in testing.
“It’s something that is being looked into, and a lot of people swear by it,” says Cerrone. However, according to Cerrone, others in the community have reported becoming more sensitive to allergies after SAAT.
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Commins usually tells patients asking about SAAT that it’s an alternative approach but that double-blind, randomized studies haven’t been performed, making it a challenge to make an informed decision.
Cerrone also recommends joining the community of support groups that can be found on Facebook, such as The AlphaGal Kitchen and Alpha-gal Syndrome.
“I think we hit 100,000 on one of the Facebook pages the other day. It’s 3 percent of the American population,” says Cerrone.
“We’re over a million people. It’s time for the corporations to start to recognize that and include us in their ingredients. It’s time for the medical community to include us. It’s time for a million people to get some help.”
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