Living with Alpha-Gal Syndrome: 10 Lessons Learned

Lessons Learned written on spiral notebook with pencils nearby

Have you or a loved one recently been diagnosed with alpha-gal syndrome? Here are 10 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. I consistently cite and link to expert sources, but nothing published on this site should be perceived as medical advice.

Alpha-gal sensitivities vary by person. You should understand your dietary restrictions, making any adjustments needed, and directing any questions to your 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 (female) or white spots around the edge of its body (male). 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 Makaela 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, Makaela 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, Makaela said, “Please tell the doctor that Makaela 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:

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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 products, 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. Understand Your Tolerance Level

While all alpha gals need to stop eating mammalian meats, not all alpha gals need to avoid other allergy triggers which can include dairy products, carrageenan, and NSAID drugs like aspirin and ibuprofen.

According to this article, alpha-gal expert Dr. Scott Commins states that 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 and stick to vegetarian cheeses. At the same time, 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.

To help you understand your tolerance level, use the form below to print out a free food diary. Simply record everything you eat or drink and when you consume it. Also document any allergy symptoms or anaphylactic reactions like:

  • Hives or an itchy rash
  • Heartburn or indigestion
  • Gastrointestinal symptoms like nausea, vomiting, severe abdominal cramping, or diarrhea
  • Swelling, especially in the lips, tongue, or throat
  • Shortness of breath
Share your food diary with your doctor and dietician to identify patterns and adjust your diet as needed.
 
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5. Leverage Helpful Apps

Fig: Food is Good

First discovered at the University of Virginia in 2007, alpha-gal is a relatively new diagnosis that is often missing from food allergy lists and tools. But the Fig app specifically covers alpha-gal.

Fig Alpha-Gal Diet Set Up Screen

As you create your account, select your level of alpha-gal sensitivity by ticking the foods you need to avoid:

  • Mammalian meats
  • Mammalian by-products
  • Gelatin
  • Dairy products
  • Carrageenan and algae
  • All of the above

Then search a list of ingredients or scan the bar code of any grocery store item to quickly identify foods that are alpha-gal friendly (or not so much) using a stop light system of green (can eat), yellow (limit this), and red (avoid). 

Barnivore

Did you know that your favorite beer, wine, or spirit may not be alpha-gal friendly? Unfortunately, many brewers, winemakers, and distillers use gelatin and other animal ingredients during the clarification or filtration process. And, because they aren’t required to list these ingredients on the label, you may not realize your boozy beverage isn’t alpha-gal friendly until it’s too late.

Thankfully, there’s the Barnivore Vegan Alcohol Directory. Although its database of more than 56,000 products is focused on identifying vegan options, it’s still an invaluable resource for alpha-gals. Just remember that while they’re not vegan, clarifying agents like isinglass (a gelatin prepared from the bladders of fish) and egg whites are alpha-gal friendly. So always read the details provided before automatically turning down an item flagged as red.

Looking up Bonterra Wine in the Barnivore App

For example, Bonterra’s cabernet sauvignon is my favorite new “everyday” red wine. While it’s not vegan, it is alpha-gal friendly because Bonterra Vineyards fines all red wines with egg whites.

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

Before my alpha-gal diagnosis, I followed a predominantly pescetarian  and vegetarian 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, nothing bad happens to you if you eat refried beans whipped with lard, French fries cooked in beef tallow, or French onion soup made with beef broth. But when you have alpha-gal, these dishes could result in a life-threatening allergic reaction. 

It’s easy to automatically rule out the cheeseburger, pork spare ribs, and lamb chops from the menu. But I also can’t automatically order the chicken sausage, bean burrito, or 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.

7. 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).

8. 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.

9. 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.

Woman applying bug spray while camping

10. 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.

Thank you for sharing!

24 thoughts on “Living with Alpha-Gal Syndrome: 10 Lessons Learned”

  1. In Western Kentucky where I live, a lot of folks, including my daughter and myself get a wheat/gluten allergy with the Alpha Gal. It’s a very rough life for sure. It affects your whole family and even the holidays.

    1. Oh, I’m so sorry that you’re dealing with additional food allergies beyond alpha-gal. It alone is enough for anyone! Sending you (and your daughter) a big hug from Kansas City!

    2. I have been suffering with a lot of nausea. My doctor did blood work and found out I have alpha gal syndrome. I have to avoid beef, pork, Lamb. My doctor said “if it doesn’t fly or swim you can’t have it”. Also can’t have gelatin, any gel pills, marshmallows. I just found out last Friday. I go back in 4 weeks, if not better will take away all dairy. I’m very concerned and upset over this. There are so many things that I don’t like, substituting stuff I like with what I need is going to be hard. I can only have chicken, turkey and fish. I believe milk may be affecting me and there are so many alternatives but I’m afraid I won’t find one I like. I’m thinking I may need to meet with a dietician and find a nutritional store that carries what I can have.

      1. Hi Tammy! I’m so sorry you have been diagnosed with alpha-gal syndrome. Unfortunately (or maybe fortunately — depending on how you look at it) every one of your fellow alpha gals can relate. It is upsetting. It is life changing. And, it’s okay to feel ALL of the emotions you’re going to feel. Hang in there, and know that there are others in the same boat with you who are happy to help as we can. <3

  2. Thanks for the information, I just found out I have alpha-gal to red meat. I already avoid dairy, but now stressing bc know have to avoid beef and pork.

    1. I am so sorry! It can be a shock and will be an adjustment. The good news is that you should still be able to eat eggs, chicken, other poultry, fish, and seafood. I know in my case, I still mourn having to say goodbye to the amazing barbeque that surrounds me here in Kansas City. But there are at least options! Good luck! Sending a big hug your way, and I hope you’ll find this site helpful as you navigate life with alpha-gal!

  3. This is so helpful, thank you! I just found out I have alpha-gal and am still dealing with hives. How long does it usually take for the hives to go away after you stop eating foods you react to? I’m trying to figure out if I’m in a normal recovery time, or am still eating something I’m reacting to. Many thanks!

    1. Hi Jennifer! I’m so sorry you’ve joined the alpha-gal allergy club. 🙁
      While I don’t typically react with hives, my middle daughter does. In her case, they usually subside in about 24 hours with antihistamines. However, every alpha gal reacts differently, so I recommend touching base with your physician if you’re concerned about the length of time you’re experiencing hives. Hope you feel better soon!

  4. Cee Cee Miller

    Hi Sage, I just found out that I have alpha-gal. About 6 weeks ago I was told I am allergic to soy, milk, cheese, peanuts, casein, shellfish and latex allergies Then last Friday I got the call, informing me that I have alpha-gal. I got the fig app and it’s amazing! I have lost 16 lbs since this has all started, I struggle with having access to vegan food. The fig app has really helped! I have been really surprised at how large grocery stores don’t carry a lot of food items I can eat. Do you have the same struggles?

    1. Hi Cee Cee, I’m so sorry you have alpha gal plus such a long list of other allergies. That’s got to be so tough! I’m not sure how big your community is, but here in Kansas City, it’s still challenging to find vegan foods. Fortunately, I’ve recently been able to add dairy back into my diet. That was a game changer! Plus, I don’t have the other allergies you do (e.g. soy, peanuts, and shellfish). Provided your peanut allergy doesn’t also include tree nuts like almonds, you can make many vegan options at home including plant-based milks, yogurts, cheeses, and ice creams.

      Also, depending on the allergy test used to identify your other food allergies, you may want to chat with your healthcare provider about retesting in a few months just in case there is a false positive in that list. My middle daughter (the first one in our family to be diagnosed with AGS about six years ago) was given a similar list of other food allergies when she was first diagnosed. But the test that was used is known for having false positives. When it was repeated about six months later, those additional items were all negative. Sending you a big hug as you learn to navigate life with AGS!

  5. Elizabeth Mercer

    I have been living with Alpha Gal for about 4 years (diagnosed officially 2 years ago) I react to dairy along with all mammal meats, ect. I was still sick after avoiding all foods and allergist said it was magnesium stearate in medicine and vitamins. I now use vegan and compound medicine. Try Emu meat, it high in iron and you feel like you’re eating beef again!

    1. Thank you so much for sharing your story! I’m sure it will help others who are newly diagnosed and/or still trying to understand their sensitivities. I hope to work on a bunch of emu recipes this fall and winter. Do you have a favorite way that you prepare it?

  6. My boyfriend was recently diagnosed with Alpha Gal. He has had these symptoms for years and the Doctors kept telling him there’s nothing wrong due to the fact of nothing in blood or urine and his CT scans and MRIs were good as well. He has suffered with severe abdominal pain for years. I discovered his intolerance to gluten and suggested some allergy tests which lead to the discovery of AGS. We are still discovering trigger foods and it’s been super hard to find things for him to eat so his stomach is satisfied. I’m not sure if it comes in stages but I do know that he got so bad he could hardly get out of bed to use the bathroom. I care about his well being and am reaching out for any extra advice to help us thru this. He has brain fog as well and passes out unexpectedly, along with a major anxiety and uncontrollable anger outbursts. I just want to help him find a way to have a decent normal as possible life. Any advise would be appreciated and thank you for your time.

    1. Oh, Sam, I’m so sorry your boyfriend is dealing with this! May advice is from the perspective of a fellow alpha-gal and the mother of two alpha-gals, but I’d recommend cutting out everything mammalian, including dairy, to see if that gets him some relief. Be sure to look for “hidden” triggers like lard in pie crust or biscuits, gelatin in marshmallows or gel caps, and otherwise safe foods fried in beef tallow. Have him track everything he eats or drinks, including medications. Here’s a form he can use to track everything — https://sagealphagal.com/food-allergy-trigger-tracker/. Once he feels he has his arms around his sensitivities, and if his physician agrees, he can try carefully adding items less likely to cause a reaction, if desired. For example, my hiking bestie has never reached to low-fat dairy products. And, after abstaining from them for about two years, I’m once again able to enjoy dairy in moderate amounts. Some people are not as sensitive to gelatin, so that’s another example. I would not recommend adding mammalian meats of any kind back into his diet unless under careful expert supervision (e.g. a “challenge” at an allergist’s office). Because I live in a wooded area and can be bit by another tick at any time, I’ve personally just accepted that I will never eat mammalian meat again in this lifetime. Hope that helps! Sending a big hug your way!

  7. Thanks for the great website! I’ve been suffering from itchy hives for 5 months and fortunately my GP ordered blood work for alpha gal because she had diagnosed 6 other cases in her practice in the past year. (I live out in the woods in north Florida.)
    Unfortunately, I just found out yesterday after 3 days of beef and pork meals and am currently covered in itchy hives.
    My question is, how do we know know if a restaurant is cooking our turkey burger on a grill along side beef burgers?

    1. Hi Susie! I’m so sorry you’re experiencing all of that! My recommendation is to have a conversation with your server. If they kitchen cannot control cross-contamination when preparing your food, I recommend choosing a menu option that avoids it. And, yes, this means I pretty much never leave home without a stash of AGS-safe protein bars as my back-up option.

  8. Hi, I have been living with this disease for over 15 years. It has been a long haul figuring things out by myself. I have had a couple of doctors help me with some things, the rest I figured out myself. I live in Minnesota so I think this is not something most medical staff are aware of. I would appreciate any information you can give me. One thing I have learned is all food is suspect until it has been researched or validated. Especially now, many manufacturers are changing ingredients to cheaper ones to cut costs.

    1. Hi Jeanne! Your experience is what prompted me to start this website. My hiking bestie (who also has alpha gal) once said, “The hardest thing about alpha-gal is NOT giving up Kansas City barbeque. It’s that you literally have to figure everything out yourself.” And, it seems like just as soon as you have it all figured out, your body decides to switch things up just to keep you on your toes! Your experience with packaged goods is why we double down on making as much as we can at home from scratch. Thanks so much for stopping by and sharing your comment! Keep in touch! <3

  9. I have Alpha Gal Syndrome also. I don’t miss the beef, because I know it can kill me. The last time I had beef was in 2001 and was in intensive care for 3 days. I was blue when I arrived at the hospital. No one knew about Alpha Gal back then, but my brother (a nurse) figured out I was getting anaphylaxis whenever I ate beef. I carry an epi pen with me always. The weird part is, I can eat pork. I can eat dairy. I hate when I go to a restaurant and they have burgers but do not carry turkey burger as a choice. I think so many people have Alpha Gal now that turkey burgers should be on any menu that beef burgers are on. Don’t ya’ll agree?

    1. Hi Vicki! Thank you for sharing your story, and thank goodness for your brother! TBH, I’m not a big fan of turkey burgers. Everything turkey just tastes a little gamey to me. BUT, I’m always very grateful when black bean burgers are an option on a menu. 🙂 Take good care of yourself! Sage.

  10. I think I finally figured out how to comment on a article. Kinda new to this stuff. Thanks for all you’ve done here.

    1. Awww, thanks for your encouragement, Jeff! I hope these lessons learned, and the site, are helpful to folks living with this relatively rare and often misunderstood food allergy!

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