Alpha-Gal Syndrome

Direct Links in the “Alpha-Gal Syndrome: Double Delay” Graphic:

• Training on how to recognize an allergic reaction and anaphylaxis from FARE [CLICK HERE]
• Original graphic concept from McGill et al, 2023 [CLICK HERE]

Direct Links in the “Living with Alpha-Gal Syndrome: Double Avoidance” Graphic:

• Foods containing alpha-gal from AlphaGalInformation.org [CLICK HERE]
• Lone star tick information from University of Rhode Island’s TickEncounter [CLICK HERE]
• Tips to prevent tick bites from the Martha’s Vineyard Tick Program [CLICK HERE]

Many people get lone star tick bites and do not develop alpha-gal syndrome. We do not know all of the reasons why some people develop an allergy and others do not. Science still has work to do! One risk factor we suspect is more bites = more risk. So try to avoid getting more tick bites. Check out our tips to Prevent the Bite.

This leaves us in a rather unsatisfying place where we say: watch and wait. Unlike Lyme Disease (which is a bacteria), there is no medicine you can take to treat or prevent alpha-gal syndrome. It is not recommended to change your diet proactively. Removing mammal products from your diet might lead your immune system to conclude that it is a foreign invader and create an allergic response the next time it sees it.

There is no known “safe” attachment time for lone star tick bites and alpha-gal syndrome. Since alpha-gal is in the tick’s saliva, the molecule is likely introduced to the body quickly. Still, there are other infectious diseases that lone star ticks can cause that take hours or days to transmit, so remove that tick ASAP.

Steps to remove a tick

Remove the tick immediately. This is how:

1. Use clean tweezers to grasp the tick as close to the skin’s surface as possible.
2. Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If it does break off and you cannot remove the mouth easily with tweezers, leave it alone and let the skin heal.
3. Thoroughly clean the bite area and your hands with rubbing alcohol or soap and water.

NOTE: Never crush a tick with your fingers. Dispose of a live tick by placing it in a sealed bag/container.

In the U.S., Lone Star tick bites cause AGS. Lone star ticks are most common in the southern, midwestern, and mid-Atlantic United States. They are also found on Martha’s Vineyard, Cape Cod, and Nantucket. Internationally, other ticks cause AGS.

While Martha’s Vineyard is experiencing explosive growth of lone star ticks, and therefore alpha-gal syndrome, it is far from the only hotspot in the United States.

CDC Map published in 2023, showing test results for Alpha-gal IgE by County from 2017-2022

Source: CDC

CDC Map of the Lone Star tick territory in the United States

Source: CDC

There are many questions yet to be answered by science and research, across fields of medicine, biology, tick ecology, and public health.

Here are a few of the major open questions:

• Some people who get lone star tick bites are fine. Some develop alpha-gal syndrome. What factors increase an individual’s likelihood of becoming allergic? What protects people from becoming allergic?
• Some people see their allergic symptoms go away over months or years. Others never find relief, even after avoiding more tick bites. Why?
• What are the long-term effects of this allergy?
• How many people are living in the United States with this allergy? With data up through 2022, the CDC estimated that up to 450,000 Americans could be living with AGS, but since then there has been broader education of healthcare providers and major media coverage. More awareness leads to more people finding the right diagnosis for their symptoms.

A common question we get is, “Can my dog get alpha-gal syndrome?” The answer is no! Your dog already has alpha-gal sugars in its body and therefore its immune system does not create an allergic response.

All mammals except humans, chimpanzees, gorillas, and orangutans have alpha-gal sugars in their bodies already.

When a Lone star tick bites, the saliva has alpha-gal sugars in it. Sometimes our body recognizes it as nothing more than a tick bite. For others, their immune system looks at the sugar and decides, “Foreign invader!” and creates a system to spot the molecule the next time you see it and produce an allergic response. The transition from bite to allergy usually happens in a matter of weeks to months.

People with Alpha-gal syndrome are most often exposed to mammals through their diet when they eat them.

Alpha-gal syndrome symptoms can include:

• Hives or itchy rash
• Nausea or vomiting
• Severe stomach pain
• Heartburn or indigestion
• Diarrhea
• Cough, shortness of breath, or difficulty breathing
• Drop in blood pressure
• Swelling of the lips, throat, tongue, or eye lids
• Dizziness or faintness
• A combination of symptoms referred to as anaphylaxis

It is critical to learn how to recognize and respond to the full range of allergic symptoms, especially anaphylaxis.

Take the FARE Recognizing and Responding to Anaphylaxis training and be prepared.

Navigating a new allergy is difficult. Alpha-gal syndrome is especially difficult due to its variable symptoms. Scroll to the resources at the bottom of the page for information on Support Groups and resources that can help you navigate next steps.

Because alpha-gal symptoms are delayed, it can be difficult for patients and providers to figure it out. If you are experiencing new symptoms, or symptoms that you find no relief for, track the time and date of the food you eat and the symptoms you experience. Share this with your healthcare provider.

Remember, in diagnosing allergies the symptoms are the most important first step.

Alpha-gal syndrome: the tick bite-induced epidemic of severe allergic reactions

An interview between the Martha’s Vineyard Tick Program and AGS Expert Dr. Scott Commins

58 minutes

The typical test performed for alpha-gal syndrome is a blood test, which looks for specific IgE antibodies the immune system produces in response to alpha-gal.

Importantly, alpha-gal testing should be pursued only after symptoms develop in consultation with a healthcare provider. The test is an important confirmatory tool but is not recommended as a screening test for individuals without symptoms.

Why do experts discourage universal screening (testing without symptoms)?

Positive alpha-gal specific IgE test results may occur in people who do not have symptoms (AGS), particularly in regions with lone star ticks. A positive blood test in the absence of symptoms is called sensitization, and is not Alpha-gal Syndrome. Individuals who test positive but do not experience reactions after eating mammalian products do not need to proactively remove them from their diet.

Your provider will work with you to develop a plan for managing both severe reactions and milder symptoms, such as a few hives or mild GI symptoms. Your plan may include the use of antihistamines, epinephrine autoinjectors, and possibly steroids, oral cromolyn, or omalizumab (Xolair).

Remember, if you are prescribed emergency medications you should carry them with you when you go out!

Learn to recgonize the symptoms of an allergic reaction, especially the symptoms of anaphylaxis which requires quick action. Take the FARE Anaphylaxis training today.

All foods made from mammals or with mammal-derived ingredients may contain alpha-gal. However, you may not need to avoid all of these foods. Work with your healthcare provider to determine what foods to avoid based on your sensitivity and preferences.

Most patients with AGS need to avoid:

• Mammal meat, like beef, pork (including bacon), lamb, venison, bison, goat, and rabbit
• Mammal organs, like liver, kidneys, intestines (tripe), and Rocky Mountain oysters
• Mammal fat, like lard and tallow
• Foods made from the tissue or fluids of mammals
• Mammal broth, bouillon, stock and gravy
• Flounder roe (nitsuke)

Foods you may need to avoid (talk to your healthcare provider):

• Dairy, like milk, yogurt, cheese, butter
• Gelatin
• Mammal byproducts
• Carrageenan (made from red algae that produce alpha-gal)
• Some natural flavorings

Keep a food and symptom journal to figure out your trigger foods. Because alpha-gal symptoms are delayed, it can be difficult to figure out the culprit. Track the time and date of your food and symptoms. Share this with your healthcare provider.

You may also wish to consult a dietician.

Visit AlphaGalInformation.org for a Food Guide

While some foods are obvious for being mammal products like steaks or pork chops, many are not so obvious.

Some of the best tools available are apps and websites:

• AlphaGalInformation.org’s Food Guide for tips and tricks to figuring out your allergy.
• For grocery shopping, use the FIG App. This has a barcode scanner and tells you whether the food has, may have, or does not have your allergen in it.
• For alcohol, use Barnivore.com. Some alcohol uses mammal products in the production to remove impurities.
• For medication or personal care products like sunscreens, use PillClarity.org.

Note that there is no required labeling yet for foods or medications containing alpha-gal. There are efforts to change that, so that alpha-gal is labeled like peanuts, milk, or other allergens.

While navigating a new allergy is never easy, there are foods you can eat.

• Fish and other seafood, except flounder roe (eggs)
• Poultry, like turkey, chicken, and duck
• Eggs
• Emu and ostrich (birds whose meat tastes like beef)
• Pork from Revivicor’s genetically modifed GalSafe pigs
• Fruits, vegetables, and grains
• Nuts, seeds, beans, lentils, tofu, tempeh

Going out to eat takes clear communication. Across the U.S., many people still do not know about Alpha-gal syndrome. It is strongly recommended that you make and carry a card with you that lists out your allergies. That way you can provide the card to a waiter, who then can take it to a cook or chef, to make sure your food choices are safe.

Before reading on, remember that medicine is always a balance of risk and benefits. Talk to your healthcare provider about any questions related to your medications and allergy concerns.

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Many drugs, vaccines, and other medical products contain mammal-derived ingredients. Some medications should be avoided or used with caution. Other products like gelatin capsules, gelcaps, and tablets containing magnesium stearate or lactose are often tolerated.

Sometimes the danger of not using a medical product outweighs the risk of a reaction (e.g., antivenom, rabies vaccine). Seek your healthcare provider’s advice about the use of specific medical products, especially if you take thyroid medication, pancreatic enzymes, infliximab (Remicaid), ustekinumab (Stelara), or if you need a vaccine, antivenom, heparin, or medical procedure.

Pill Clarity is a FREE resource that can help you figure out if your medications contain alpha-gal and help you find medications that are free from animal-derived ingredients.

Cosmetics, personal care products, and household products can also contain alpha-gal. If you react to them, try vegan products. Check for carrageenan, especially in toothpaste.

Dander, waste, saliva, blood, and amniotic fluid from pets, livestock, and game contain alpha-gal. Most people can keep their pets. Farmers may need to take special precautions, especially during calving. Hunters need to avoid direct exposure to blood.

Some people react to airborne alpha-gal, especially fumes from cooking meat.

Visit AlphaGalInformation.org’s Food Guide for more information and helpful tips.