What is Alpha-Gal Syndrome: The ABCs of AGS

The ABCs of Alpha-Gal Syndrome

One of the most common words I hear newly diagnosed alpha gals use to describe their condition is “overwhelmed.” Not only are there limited resources available to guide alpha gals, but reactions to alpha-gal can vary significantly by individual. For answers to questions like “What is alpha-gal syndrome?” and “How do I live with a red meat allergy?” I created this list with answers from A to Z.

The information provided on this site is based on my personal experience living with alpha-gal syndrome. I cite and link to expert sources as often as possible, but because I have an MBA (and not an MD), nothing published on this site should be perceived as medical advice as I’m clearly lacking the letters required on my diploma to be a physician.

While nearly 10% of the US population is allergic to the most common ingredients associated with food allergies – dairy, peanuts, shellfish, wheat, or soy – alpha-gal syndrome (AGS) is a relatively new condition making it a largely unknown, frequently undiagnosed, and often difficult-to-manage food allergy.

To make things even more challenging, reactions to alpha-gal can be as unique as each individual. While all alpha gals need to avoid mammalian meat, some can tolerate dairy while others cannot. Some alpha gals react to alpha-gal triggers with hives, swelling, and rashes while others experience gastrointestinal issues like extreme stomach pain, diarrhea, nausea, and/or vomiting. And because people with low AGS numbers can still experience a big reaction when they come in contact with a now “illegal” food, many of us have been advised to carry an epinephrine autoinjector, like an EpiPen.

    

In This Article

What is alpha-gal syndrome? It's an allergy to red meat.

What is Alpha Gal Syndrome?

AGS is a food allergy to mammalian meats, like beef, pork, bison, and lamb. It is also known as alpha-gal allergy, red meat allergy, mammalian meat allergy, or tick bite meat allergy. Some people with AGS are also allergic to by-products made from mammals, like tallow, gelatin, and glycerin. And some people with AGS are allergic to mammalian dairy products made from cow’s milk, sheep’s milk, and goat’s milk.

Lone Star Tick Crawling on Wooden Railing

What Causes Alpha-Gal Syndrome?

In the United States, alpha-gal syndrome is most commonly caused by a bite from the lone star tick. You can identify the female lone star tick by the distinctive white dot on her back. While the male doesn’t have the same white spot, he will have smaller white spots or streaks around the outer edge of his body.

Range of the Lone Star Tick in the United States

Outside the Americas, alpha-gal syndrome in Europe, Australia, and Asia has been linked to other species of ticks, including the castor bean tick, kangaroo tick, and Asian longhorn tick.

Lone star ticks are fast. Moving three times faster than the black-legged tick, they are the Usain Bolt of the tick world. Lone star ticks are also aggressive. While most other species of ticks hang out and wait for a host to saunter by before jumping on them, lone star ticks will proactively seek a host, rapidly traveling many yards to attach themselves to a person, deer, or another host, earning them the nickname hunter ticks

When a lone star tick bites you, it injects a sugar molecule called alpha-gal into your body. For some people, this triggers a mild to life-threatening reaction to mammalian meats, milks, and by-products.

On the plus side, lone star ticks do not carry Lyme disease. So they have that going for them.

What Are the Symptoms of AGS?

According to allergist Jay Lieberman, MD, “not everyone who gets a tick bite will develop the allergic antibody, and not everyone with the allergic antibody will actually develop symptoms after eating meat.” But for those who do react to the alpha-gal epitope, the result can range from annoyingly uncomfortable to life threatening.

AGS reactions typically occur three to six hours after enjoying a juicy cheeseburger, sipping a delicious milkshake, or consuming another “illegal” food. Alpha-gal reactions include:

  • An itchy rash or hives
  • A runny nose, sneezing, or headache
  • Swelling in the lips, tongue, or throat
  • Wheezing or shortness of breath
  • Gastrointestinal symptoms like abdominal pain, diarrhea, nausea, and/or vomiting
  • Anaphylaxis, a severe and potentially life-threatening allergic reaction
Three vials of blood and a test result

How Do I Know if I Have AGS?

Alpha-gal syndrome is diagnosed by a simple blood test. Due to its rarity, the diagnosis of this potentially life-threatening food allergy is currently largely patient driven. If you believe you might have alpha-gal, talk to your doctor. Help ensure he or she orders the right test – and not the similarly named bloodwork for Fabry disease  – by sharing these lab codes:

  • Quest: Alpha-Gal IgE Test Code: 95241
  • Labcorp: Alpha-Gal IgE Test Code: 650001

What Can I Do to Prevent AGS?

Avoiding tick bites – especially from the lone star tick – is the most important way to prevent yourself from contracting alpha-gal syndrome. Before you head outdoors, apply insect repellent. The EPA recommends insect repellents that include ingredients like DEET, citronella oil, or lemon eucalyptus oil. Wearing effective repellent is especially important if you’ll be spending time in grassy, brushy, or wooded areas where ticks are most likely to be found.

After spending time in the great outdoors, be sure to perform a tick check. Before you step inside your home or tent, look for any ticks crawling on your clothes and brush them off. As soon as possible, take a hot shower and do a thorough tick check to ensure none have latched onto you. At just ¼ inches long, lone star ticks are not very big, so examine your body carefully for an unwanted hitchhiker.

If you find a tick attached to your skin, remove it as soon as possible. The CDC recommends using clean tweezers to grasp the tick as close to your skin’s surface as possible. Then pull upward with a steady, even pressure and drop the tick in rubbing alcohol or a sealed bag or container. Once you’ve successfully removed the tick, thoroughly clean the area, your hands, and the tweezers with rubbing alcohol or soap and water.

To avoid tick bites (and contracting alpha-gal syndrome), it’s also important to protect your yard and pets from ticks. To make your yard less attractive to ticks without applying harsh chemicals, mow your grass regularly and grow plants that naturally repel ticks (like lavender, lemon balm, and lemongrass). To protect your pets from tick bites, keep them out of wooded areas as much as possible and talk to your veterinarian about tick prevention products.

Related Article: Animals that Eat Ticks: An Alpha Gals’ New Best Friends

What Should I Do If I Have AGS?

If you believe you have alpha-gal syndrome, talk to your healthcare provider about confirming your suspicions with a test. Because many physicians are still unaware of alpha-gal, be sure that your doctor orders the right test by sharing these lab codes:

  • Quest: Alpha-Gal IgE Test Code: 95241
  • Labcorp: Alpha-Gal IgE Test Code: 650001

If your lab results confirm that you have alpha-gal, work with your doctor to understand your sensitivity and the foods and products that you need to avoid. And be vigilant about preventing new tick bites as they can reactivate or worsen your alpha-gal allergy.

Related Article: Living with Alpha-Gal Syndrome: 8 Lessons Learned

The ABCs of AGS (Alpha-Gal Syndrome)

The ABCs of AGS

A is for Allergy

Alpha-gal syndrome is a tick-borne illness that results in a food allergy to meat, dairy, and other products made from mammals like cows, pigs, and sheep. According to Dr. Scott Commins at the University of North Carolina Chapel Hill, it’s the number one cause of adult-onset food allergy in the Southern US. 

Woman applying bug spray while camping

B is for Bug Spray

Since alpha-gal syndrome is the result of a bug bite – typically from the lone star tick – you’ll want to apply bug spray before heading outdoors. Not only can it help prevent new cases of AGS, but it can also keep an existing case from getting worse due to subsequent bites.

Carrageenan in Kirkland Soy Milk at Costco

C is for Carrageenan

Carrageenan is an extract made from an edible red seaweed known as Irish moss. Commonly used to emulsify and thicken foods, this plant-based ingredient is often used in vegan versions of cheese, yogurt, and milk. Unfortunately for alpha gals, carrageenan contains the alpha-gal epitope and can cause a reaction in some people with AGS.

Related Article: What is Carrageenan (and Why Should Alpha Gals Avoid It)?

Assortment of Dairy Products Including Cheese, Milk, and Yogurt

D is for Dairy

According to this article, most people with alpha-gal can tolerate “moderate, lean dairy” (like skim milk) but may need to avoid dairy products with a high fat content like ice cream. But some alpha gals cannot tolerate dairy products at all and must give up cheese, yogurt, ice cream, and other products made from cow’s, goat’s, or sheep’s milk. 

Can you consume dairy with alpha-gal syndrome?

Despite a leading alpha-gal physician’s statement above, an informal poll I posted in an alpha-gal support group on Facebook showed that the vast majority of respondents cannot tolerate dairy. Therefore, I believe it’s important to know your tolerance level for dairy and work with your physician to make any recommended dietary changes.

Woman Injecting an EpiPen in her leg

E is for Epinephrine Autoinjector

Alpha-gal reactions like hives, swelling, and shortness of breath are treated like other food allergies, with urgent care or emergency physicians administering antihistamines, epinephrine, and other medications. Some alpha gals (including yours truly) are advised to carry an epinephrine autoinjector. It allows the patient to self-administer a dose of epinephrine to manage a severe reaction.

Fish and Seafood

F is for Fish

Based on their sensitivity to dairy products, alpha gals tend to follow a largely vegetarian or vegan diet. However, fish is one of several alpha-gal friendly animal proteins. Whether it’s tuna, trout, salmon, lobster, octopus, squid, or another edible sea creature or ocean dweller, as long as it’s not a mammal (like dolphin or whale), it’s safe for alpha gals to eat.

Sage Advice: Other alpha-gal friendly animal proteins include eggs and poultry, like chicken, turkey, duck, emu, ostrich, quail, and pheasant.

G is for Gelatin

Typically made from bovine or porcine collagen, gelatin is a colorless and tasteless water-soluble protein. It’s also a hidden alpha-gal trigger frequently found in jelly, marshmallows, candy corn, gummy bears, chewable vitamins, gel caps, and many other products. It is often a thickener in products like jams, yogurt, cream cheese, and margarine. And, it can be used to clarify fruit juices, vinegars, and even wine.

Related Article: Sweet! 50 Alpha-Gal Safe Candy Treats

Looking up Bonterra Wine in the Barnivore App

If you are an alpha gal who is sensitive to gelatin, be sure to read the ingredient list of all products and avoid options that specifically list gelatin. You can also use an app like Fig to quickly scan a bar code and know if a product is safe to eat. And because brewers, wine makers, and distillers are not required to list the ingredients that go into their beer, wine, or spirits, a tool like Barnivore helps you quickly identify which boozy beverages are gelatin free.

Old Fashioned Alarm Clock with Orange Background

H is for Hours

While most allergic reactions to food – like eggs, peanuts, or shellfish – happen within minutes of exposure, alpha-gals typically don’t experience a reaction until two to eight hours after eating mammalian meat or dairy products. 

Resources for people with alpha-gal allergy

I is for Information

Alpha-gal syndrome was first discovered at the University of Virginia in 2007, making it a relatively new food allergy. More than a decade later, an alpha-gal diagnosis is still largely patient-driven. Get more info about alpha-gal syndrome from these helpful resources.

J is for January

Veganuary is an annual challenge run by a UK-based non-profit organization during the month of January. It encourages people to follow a vegan lifestyle for 31 days in the first month of the calendar year. While alpha gals do not need to adopt a vegan lifestyle – because they can safely consume honey, eggs, poultry, fish, seafood, and sometimes dairy – some alpha gals use Veganuary as a starting place to eliminate mammalian meats and test their dairy tolerance. 

Sage Advice: If you don’t want to go full vegan, use Veganuary as a base and add in alpha-gal friendly products like honey, eggs, poultry, and fish.

K is for Knowledge

Because each person’s sensitivity to alpha-gal can vary, one of the best ways to manage your alpha-gal syndrome is by knowing your specific triggers and how to manage them, preferably by keeping a food diary. Use the form below to print a free trigger tracker that you can use to document everything you eat and drink for a month. Record any reactions and list any potential triggering ingredients. Share your food diary with your physician and/or dietician to identify patterns and adjust your diet accordingly.

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L is for Lone Star Tick

In the United States, the lone star tick is the primary way people contract alpha-gal syndrome. How do you identify a lone star tick? A female lone star tick is easily identified by a white dot on her back, while the male lone star tick has white spots or streaks on the outer edge of his body.

Sage Advice: Outside of the United States, other species of ticks – including castor bean tick, kangaroo tick, and Asian longhorn tick – are known to transmit alpha-gal to humans.

Cow Sticking Out Tongue

M is for Mammals

Alpha gals are allergic to all mammalian meat, including beef, bison, pork, lamb, and venison. Some alpha gals are also allergic to mammalian milk and must avoid products made with cow’s milk, sheep’s milk, and goat’s milk. And others must also abstain from food and beauty products that contain mammalian-derived ingredients like gelatin and lanolin. 

N is for Not Alone

While alpha-gal syndrome is a relatively new diagnosis and you may not know anyone else with this condition, you are not alone! From Facebook groups uniting tens of thousands of alpha gals from around the world to helpful websites, here are several helpful resources for living with alpha-gal.

An ostrich with a green background

O is for Ostrich

Because it comes from a bird (and not a mammal), ostrich is an alpha-gal friendly animal protein. But unlike the poultry most commonly consumed in the United States – chicken and turkey – ostrich closely resembles beef. Alpha gals can enjoy ostrich filets cooked like steak or ground ostrich formed into burgers. And as an added benefit, ostrich beats beef in many ways. When comparing one ounce of ground ostrich to one ounce of 80% lean ground beef, ostrich is lower in calories, lower in fat, and higher in protein.

Sage Advice: Want to give ostrich meat a try? Amaroo Hills is a family farm owned by an alpha gal.

A nutritional comparison of beef to ostrich meat

P is for Patient-Driven Diagnosis

Because alpha-gal is a relatively new condition, many physicians are unaware of this food allergy. As a result, some alpha gals to go years before being diagnosed and often after undergoing procedures like a colonoscopy or endoscopy due to their gastrointestinal symptoms. In many cases, even in regions of the country where alpha-gal is prevalent, it is the patient who learns about AGS and approaches his or her physician for a test.

A spoon and two bowls of cooked and uncooked quinoa

Q is for Quinoa

Called “the mother grain” by the Incas, where it was grown 7,000 years ago in the Andes Mountains, quinoa is an ancient grain and complete protein. That means it includes all nine types of amino acids that humans need to obtain from food. And that makes it a perfect protein replacement for the mammalian meats that are off-limits for alpha gals.

Related Article: Power Up with Quinoa, A Complete Protein for Alpha Gals

R is for Red Meat

Because the alpha-gal allergy makes alpha gals allergic to all mammalian meat, it’s also known as the red meat allergy. Just remember that pork is a mammalian meat (despite being marketed as “the other white meat”) and that alpha-gal triggers are not limited to mammalian meat. Some alpha gals will also have a reaction to dairy products, carrageenan, and other mammalian products (like gelatin, collagen, lanolin, lard, and beef tallow).

S is for Symptoms

While most food allergies cause severe reactions in mere minutes, it’s not uncommon for an alpha-gal reaction to take several hours to appear. Additionally, reactions can vary widely by person and include:

  • An itchy rash or hives
  • A runny nose, sneezing, or headache
  • Swelling in your lips, tongue, or throat
  • Wheezing or shortness of breath
  • Stomach pain, diarrhea, nausea, and/or vomiting

If you experience any of these symptoms after consuming mammalian meat, dairy, or other mammalian products, ask your doctor for an alpha-gal blood test and share these lab codes:

  • Quest: Alpha-Gal IgE Test Code: 95241
  • Labcorp: Alpha-Gal IgE Test Code: 650001

T is for Ticks

In addition to the lone star tick – the disgusting little blood sucker primarily responsible for spreading AGS in the US – castor bean, Asian longhorn, cayenne, black-legged, American dog, and other species of ticks can also spread alpha-gal syndrome. So be sure to apply insect repellent before enjoying the great outdoors in tick country.

U is for Useful

Based on my experience with alpha-gal syndrome, I started Sage Alpha Gal as a resource for others living with this condition. The site offers smart tips for living with AGS, including links to helpful resources, answers to your questions, and alpha-gal friendly recipes.

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Fruits Vegetables and Nuts in a Heart-Shaped Bowl

V is for Vegan and Vegetarian

If you read “D is for Dairy” above, you know that not all alpha gals have to avoid dairy products. So based on your dairy tolerance, you can describe your alpha-gal diet as either:

  • vegan + eggs + poultry + fish or 
  • vegetarian + eggs + poultry + fish

Sage Advice: Whether your alpha-gal diet builds on a vegan or a vegetarian base, check out these alpha-gal friendly proteins.

Vegan vs Vegetarian vs Alpha Gal Diets

W is for Wellness Exam

Once you’ve been diagnosed with alpha-gal, it’s a good idea to repeat your alpha-gal blood test each year at your annual wellness exam to monitor your levels. Make it easy for your primary care doctor to order the right test by providing these lab codes:

  • Quest: Alpha-Gal IgE Test Code: 95241
  • Labcorp: Alpha-Gal IgE Test Code: 650001

X is for eXtra Vigilant

Once you’ve been diagnosed with alpha-gal syndrome, not only do you have to avoid all mammalian meats (and sometimes milks), but you should be extra vigilant about all of the other places alpha-gal triggers lurk, based on your personal tolerance level. Be sure to read the ingredient panel on all foods, medicines, and beauty products, looking for alpha-gal triggers such as carrageenan, gelatin, and lanolin.

A plant-based ingredient, carrageenan is often found in vegan dairy products like the soy milk and coconut milk at Starbucks. Typically derived from bovine or porcine collagen, gelatin is often in marshmallows or hiding in your favorite beer or wine. And lanolin, a natural moisturizing wax extracted from sheep’s wool, can be found in moisturizer, body lotion, lip balm, and sunscreen.

Woman in Pink Shirt with Thumbs Up

Y is for Yes

While alpha gals must say no to mammalian meats like beef, bison, pork, lamb, and venison, they can say yes to poultry, fish, and seafood. While the average American eats 100 pounds of chicken and two pounds of canned tuna a year, your diet doesn’t have to be limited to boring grilled chicken and tuna sandwiches.

Add some variety to your alpha-gal friendly diet with additional poultry choices like turkey, duck, pheasant, quail, emu, and ostrich. You might be surprised at how closely duck bacon, duck pastrami, and ground ostrich compare to their pork and beef counterparts!

When it comes to delicious options from the water, alpha gals can eat shrimp, salmon, tilapia, cod, catfish, crab, and clams in addition to tuna.

Z is for Zero Tolerance

While some alpha gals can safely consume dairy products and/or  mammalian-derived products like gelatin, nearly all alpha gals have zero tolerance for mammalian meats. Whether it’s beef, bison, pork, lamb, venison, or another mammal, alpha gals should avoid all mammalian meats like bacon, hamburgers, steak, lamb chops, pork chops, ribs, and sausage.

Are You or a Loved One Living with Alpha-Gal Syndrome?

Are you a fellow alpha gal? Do you have a loved one who has been diagnosed with alpha-gal syndrome? What words would you add to this list of words associated with AGS? Share your thoughts in the comments section below.

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