Living with Alpha-Gal Syndrome: 8 Lessons Learned

7 Lessons Learned Living with Alpha-Gal Syndrome

Have you or a loved one recently been diagnosed with alpha-gal syndrome? Here are eight important lessons I learned the hard way that I wish someone had shared with me when I began living with alpha-gal.

The information provided on this site is based on my personal experience living with alpha-gal syndrome. 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.

Alpha-gal syndrome is a tick-borne illness linked to the Lone Star tick, the nasty little bloodsucker with a white dot on its back. So, it’s no surprise that alpha-gal allergy is more common in people from the eastern and midwestern United States where this insect makes its home. 

I was diagnosed with alpha-gal syndrome in March 2021 after experiencing symptoms for more than a year. Based on my experience living with alpha-gal syndrome, and with two daughters and several friends who also suffer from the disease, these are the lessons I’ve learned, most of them the hard way.

    

Three vials of blood and a test result

1. If You Suspect You Have Alpha-Gal, Request a Test

A few years ago, while out on one of our regular walks around the lake, my friend Michelle pulled up the bottom edge of her t-shirt and showed me a nasty tick bite. It was red and swollen, and I encouraged her to get it checked out. She did. Her doctor ran a few tests and wasn’t concerned.

Over the next six months, she battled intermittent gastrointestinal demons that would often have her spending the night on the bathroom floor where she had easy access to the toilet for alternating vomiting and diarrhea. I suggested that she might have alpha-gal syndrome and encouraged her to get a test, but her primary care physician (a long-time friend of hers) brushed it off.

Unable to pinpoint the cause of her abdominal pain, Michelle stuck to a bland diet of mostly toast, cottage cheese, applesauce, green salad, and chicken. Growing tired of this diet, she insisted that her doctor write her an order for an alpha-gal test. When the nurse called to share that the blood test results came back positive, Michelle said, “Please tell the doctor that Michelle says ‘I TOLD YOU SO!’”

You know your body better than any medical professional. If you suspect you have alpha-gal, request a test. A blood draw will easily confirm (or deny) your suspicions. Be sure your physician orders the right test – and not the similarly named tests for a different condition, Fabry disease – by sharing these lab codes:

  • Quest Alpha-Gal IgE Test Code: 95241
  • Labcorp Alpha-Gal IgE Test Code: 650001
Physician Entering Notes on Tablet

2. See an Allergy Specialist

Primary care physicians tend to be generalists who know a bit about a whole lot of medical conditions. But they aren’t typically experts in any specific area. And when you are diagnosed with a condition that is still relatively new to the medical community, it’s even more likely your doctor will only have limited advice.

When my oldest daughter’s test results came back positive for AGS, her doctor simply told her to avoid red meat.

Incorrectly thinking of pork as “the other white meat,” Juliette continued to eat sausage, pork chops, and bacon, only to discover the hard way that she reacts more strongly to pork products than to beef. After all, alpha-gal syndrome is an allergy to all mammalian meats, not just red meat. Had she met with an allergy specialist, she would have received much more specific information and care.

3. Meet with a Dietician

Most physicians trained in America – including allergists – spend little to no time studying nutrition in medical school. With limited knowledge, they tend to dispense limited advice. In my experience, I’ve received infinitely better nutritional advice from my mother’s world-class online research efforts than any MD.

When I was diagnosed with alpha-gal syndrome, my doctor told me to stop consuming mammalian meats and dairy. That was it. There was no handout of good plant-based protein sources, no reminder of how much calcium a midlife woman should be consuming, and no heads-up about symptoms of a vitamin B12 deficiency.

I spent the next year incorrectly thinking I was consuming enough protein by eating two eggs for breakfast and making smoothies with almond milk. But two eggs are only 25% of my daily protein needs, and almond milk is mostly water and only contains one gram of protein per cup. Fast forward to my annual checkup a year later, and my doctor informed me that I had a serious protein deficiency.

Unlike a primary care physician, a dietician is a food and nutrition expert. When a tick bite changes your life forever, a registered dietician can help you navigate the vegan + eggs + poultry + fish diet that’s been forced upon you.

Related Article: Best Milk Alternative for Alpha-Gal Syndrome

4. Dining Out with Alpha-Gal is a Whole New Adventure

Before my alpha-gal diagnosis, I followed a predominantly vegetarian and pescetarian diet. A few times a year, I’d crave a burger or steak. And a few times a year I’d eat my fill of the world’s best barbeque. When you subscribe to a specific diet without a life-threatening food allergy, it’s okay if the refried beans are made with lard, the fries are cooked in beef tallow, and the French onion soup is made with beef broth. But when you have alpha-gal, dining out is much more complicated.

It’s easy to automatically rule out the cheeseburger, meatloaf, and lamb chops from the menu. But I also can’t automatically order the chicken, the bean burrito, or the mussels because the:

  • chicken sausage may be stuffed into a pork casing, 
  • whole black beans may have been cooked in beef broth, and
  • mussels may contain chorizo or bacon bits not called out specifically on the menu.

In order to safely dine out with alpha-gal syndrome, be sure to let your server know about your food allergy and work with them to be sure they don’t forget that pork, bacon, and other pork products are not actually white meat.

Sage Advice: The soy milk at Starbucks contains a seaweed extract that can cause a reaction in some alpha gals. This article explains why you should avoid carrageenan.

5. Servers May Not be Very Helpful

Let me preface this lesson by admitting that I wouldn’t survive a day in the restaurant business. Whether you’re seating guests, cooking food,  serving meals, or cleaning up, it’s demanding work without any downtime. And, just like many of your friends and family members, most restaurant workers haven’t heard of alpha-gal syndrome.

That said, be prepared for situations like this…

Recently I was at one of Kansas City’s delicious barbeque restaurants. Unfortunately — “thanks” to a stupid tick bite — I don’t get to eat burnt ends, beef brisket, or ribs any more. But I was set to order the turkey platter.

Me: Hi! I have an allergy to beef and pork. I’d like the turkey platter, but I have a few questions about the side dishes.

Guy Taking My Order (handing me a laminated card): Here is a list of food allergens.

Me (silently in my head): Nice!

Me (scanning the list, silently in my head): Gluten, dairy, soy, eggs, peanuts, tree nuts, fish, shellfish, MSG. Uh, oh.

Me: I don’t see a column for beef or pork.

Guy Taking My Order: Each allergen is listed in a column and an “x” means it has it.

Me: Right. But I don’t see beef or pork. I just need to be sure there aren’t burnt ends in the baked beans or ham in the cheesy corn.

Guy Taking My Order: This column is gluten, this column is dairy, this column is soy…

Me (silently in my head): Oh, boy, we are soooo talking past each other.

Ultimately, he passed me off to the next person in the ordering line process who confirmed that the beans were unsafe (burnt ends as anticipated), the cheesy corn was fine (as long as you can tolerate dairy), and the French fries, sweet potato fries, onion rings, and hush puppies were all cooked in soybean oil (rather than beef tallow).

6. You Might Feel Surprisingly Sad Bidding Farewell to Now Forbidden Foods

I didn’t eat a lot of meat before I contracted alpha-gal, but a few times a year when I craved a juicy cheeseburger or a big platter of burnt ends, I could enjoy them without consequences. In a world where so many people are dealing with real problems – war, famine, drought, social injustice – I was surprised (and often feel a little guilty) at how devastated I sometimes feel at the thought of never enjoying these foods again.

7. Alpha-Gal Triggers May be Lurking in Unexpected Places

Alpha-gal is more than a mammalian meat allergy, and being vigilant about the ingredients in the food you consume isn’t enough. Chewable and vitamin gummies may contain carrageenan or gelatin made from animal products. Lanolin, a natural moisturizing wax extracted from sheep’s wool, is commonly used in a range of skincare products, including lip balm, soap, and moisturizer. Glycerin (also known as glycerol), a common ingredient in shampoo, shaving cream, and toothpaste, can be derived from animal fats. And if you were counting on collagen to keep you looking as young as Jennifer Aniston, you’ll have to opt for a marine-based alternative.

8. You Must Be Vigilant Against Future Tick Bites

One bite from a Lone Star tick can change your life forever, but once you have been diagnosed with alpha-gal syndrome, it’s still important to avoid tick bites. Subsequent bites can increase your reaction to mammalian meats, dairy products, and personal care products with ingredients derived from animal products. Where you once had to simply abstain from eating a burger, additional tick bites may cause you to experience an allergic reaction from airborne particles when someone is grilling them up for others. So be sure to apply good quality tick spray before heading outdoors, maintain flea and tick medicine for your pets, and consider a form of tick control in your yard.

What Are the Biggest Lessons You’ve Learned Living with Alpha-Gal?

Did you experience any of these lessons? Which ones were toughest for you? Are there other lessons learned that you want to pass along? Share your experiences in the comments section below.

More Tips for Living with Alpha-Gal

Dark Chocolate Bar with Cocoa Beans

Alpha-Gal and Chocolate. Is it safe to eat?

An assortment of non-dairy milk options

Guide to Non-Dairy Milks. Selecting the best milk alternative for alpha-gal syndeome.

Animals That Eat Ticks. An alpha girl’s new best friends!

Thank you for sharing!

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