“Has anyone heard of alpha-gal syndrome?” one MyFoodAllergyTeam member asked. “Even my doctor had no idea.” If you have alpha-gal syndrome, you are allergic to many types of meat and other animal-derived products. Here’s what you need to know about this rare condition.

What Is Alpha-Gal Syndrome?

Alpha-gal syndrome is a meat allergy that can develop after you’re bitten by a lone star tick. The bite itself transfers a carbohydrate molecule called alpha-gal into your body. If your body’s immune system reacts to this molecule, then you will develop alpha-gal syndrome. The initial exposure to alpha-gal sensitizes your body to this molecule, and after that your body will have an immune system reaction after every exposure.

Alpha-gal can be found in all mammals that aren’t primates. It’s in all meat that comes from these animals, including beef, lamb, pork, rabbit, goat, and venison. It’s also present in any medications that are made from mammalian products, as well as in dairy products, though at lower levels. It may also be present in gelatin, which has a wide variety of uses, including as gel capsules for some medications. Alpha-gal syndrome does not prevent you from eating chicken, turkey, or fish, though you can be allergic to those foods separately.

What Causes Alpha-Gal Syndrome?

Alpha-gal doesn’t have any other known causes except for lone star tick bites. If you have alpha-gal syndrome, then you were bitten by one of these ticks at some point, even if you don’t remember it.

Eating meat or consuming other products from mammals does not cause alpha-gal.

What Are the Symptoms of Alpha-Gal Syndrome?

The symptoms of alpha-gal syndrome are similar to those of other food allergies. They include:

• Nausea
• Vomiting
• Hives
• Heartburn
• Diarrhea
• Stomachache
• Coughing
• Shortness of breath
• Difficulty breathing
• Swelling in the face, tongue, or throat
• Significant drop in blood pressure
• Dizziness
• Faintness

Most people experience symptoms somewhere between two and six hours after eating something that contains alpha-gal. Reactions usually start within three months of the tick bite.

If you feel like you can’t breathe, your blood pressure drops, you feel like you’re going to lose consciousness, or you notice swelling in your face, tongue, or throat, seek medical help right away. This is called anaphylaxis and it can be life-threatening.

A few members at MyFoodAllergyTeam have experienced these reactions due to alpha-gal syndrome. One explained, “I too have alpha-gal. I’m new to all this and had to go to the ER for a couple days cause I couldn’t breathe.” Another shared, “I was recently diagnosed with alpha-gal allergy. I had three severe reactions in the middle of the night, with the last one causing anaphylactic shock.”

How Is Alpha-Gal Syndrome Diagnosed?

Alpha-gal syndrome can be diagnosed in a number of different ways. Most health care providers will talk to you about the symptoms you’re experiencing, how much time passes after you eat meat before you experience those symptoms, and whether you know if you’ve been bitten by a tick recently.

If they suspect you have alpha-gal syndrome, they can test either your blood or your skin. Generally, they administer a blood test that looks for alpha-gal antibodies, though they may choose to prick your skin and expose you to alpha-gal to see if you develop a hive. An allergist or immunologist might need to perform several tests to determine whether you have alpha-gal syndrome, a meat allergy, or both, so they can give you the right treatment plan.

How Is Alpha-Gal Syndrome Treated?

There’s no treatment or cure for alpha-gal syndrome. The best way to avoid symptoms is to make sure you don’t consume anything that includes alpha-gal. You will need to get good at reading labels on any processed food that you buy.

Some ingredients that come from mammals aren’t easy to identify. Your doctor or a registered dietitian can give you a list of items you need to avoid. Then, you can scan all labels to make sure you don’t end up consuming alpha-gal. You will also need to be very careful when eating out, and you may have to teach your friends and family about alpha-gal syndrome if you want to eat with them.

Learning how to eat after being diagnosed with alpha-gal syndrome can be hard. “I was diagnosed in November 2015. It is a huge pain to deal with as far as reading labels,” one member at MyFoodAllergyTeam shared. Another explained, “I got my alpha-gal level back and it was super high. So no red meat, pork, or dairy. The meat isn’t hard, but the dairy is because it is in everything.”

Note that not everyone needs to avoid dairy. Only somewhere between 5 percent and 20 percent of people diagnosed with alpha-gal syndrome will have a reaction to dairy products. You and your allergist or immunology expert will need to work together to decide what is safe and what you need to avoid.

If you're worried about getting enough nutrients or you feel worried every time you try to eat, you may benefit from speaking with a registered dietitian. They can help you find foods you enjoy that satisfy your needs.

If you have severe symptoms or your allergist believes you might develop them, they will prescribe you an auto-injector that contains epinephrine. This device will quickly inject one dose of a medication that helps prevent anaphylaxis until you can get urgent medical care. You will need to carry this auto-injector with you at all times. Never leave home without epinephrine, and make sure that people you’re close to know where it’s located and how to use it, in case you pass out or can’t breathe.

You should also avoid getting more lone star tick bites. Every time you get bitten, it will make you even more sensitive to alpha-gal. You can do this by:

• Making sure you wear long sleeves and long pants whenever you’re in the woods or tall grass
• Tucking your pant legs into your socks
• Tucking your shirt into the waistband of your pants
• Using powerful tick repellant whenever you’re outside
• Checking thoroughly for ticks every time you come inside
• Removing a tick if you find one and not scratching the area

If you do get bitten by a tick again, you may need to talk to your allergist about what your next steps should be.

Is Alpha-Gal Syndrome Curable?

There’s no cure for alpha-gal syndrome, but some people do find that their antibody levels go down over time. If this happens for you, it will take at least a few years. If you don’t get any more lone star tick bites, you’re more likely to see your antibody levels go down.

You can ask your doctor for an alpha-gal antibody test every year. This will show if your levels are going down or if you’re still allergic to Alpha-Gal. Your allergy team may also choose to have you try foods with alpha-gal in the office. That way, if you have an allergic reaction, medical care is available right away.

Talk to Your Doctor

If you’re experiencing allergy symptoms when you eat meat products or any products from mammals, talk to your doctor about the possibility of alpha-gal syndrome. They may send you to an allergist who can administer tests, help you understand your results, and give you advice on what you need to do. Since alpha-gal syndrome can be life-threatening in some people, don’t put off seeing a doctor if you think there’s any chance you might be living with it.

Talk With Others Who Understand

MyFoodAllergyTeam is the social network for people with food allergies and their loved ones. On MyFoodAllergyTeam, more than 41,000 members come together to ask questions, give advice, and share their stories with others who understand life with food allergies.

Have you been diagnosed with or do you suspect you’re living with alpha-gal syndrome? Share your experience in the comments below, or start a conversation by posting on your Activities page.