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Thriving with Alpha-gal Syndrome
Featuring the Two Alpha Gals, fasten your seatbelts as Alerje explores what it means to thrive with a growing food allergy to red meat and other mammal-derived products, Alpha-gal Syndrome.
Introduction
With food allergies, it’s not just about simply “getting by,” but Making Every Moment Count! At Alerje, we're a bunch of food allergy and health tech nerds who aren't afraid of innovation or exploring areas off the beaten path. Fasten your seatbelts and explore with us a rare but vastly growing allergy to red meat, and enter the world of Two Alpha Gals, two fearless innovators who have used research, self-advocacy, and community to Thrive with Alpha-gal Syndrome!
What is Alpha-gal Syndrome?
Ah, the summertime! Nothing like the warmth of the sunshine, camping trips, the sizzle of the grill, and… a red meat food allergy? That’s right! Severe food allergies can go beyond just the Top 9. According to the CDC, Alpha-gal Syndrome (also called red meat allergy or AGS) is a serious, potentially life-threatening allergic reaction to the presence of alpha-gal (galactose-α-1,3-galactose), a sugar molecule found in most mammals.
Like many food allergies, according to AAAAI, those susceptible to severe reactions may be treated with epinephrine in case of anaphylaxis. However, this particular allergy is unique in the fact that a tick bite typically induces AGS (i.e., Lone Star Ticks), which often thrive in grassy areas within the eastern and southeastern portions of the U.S. Studies indicate that this growing allergy to red meat has impacted more than 34,000 people between 2010 and 2018 and that number continues to increase. It’s not just avoiding steak - to avoid an AGS reaction, there are many lifestyle changes necessary, including reading labels and the unique challenge of avoiding products containing mammal ingredients. For example, you'd be surprised to know that even some medications can have mammal ingredients!
THRIVING with Alpha-gal Syndrome
An allergy to red meat and mammal ingredients can pose many challenges. However, even with a rare food allergy such as AGS, it’s possible to THRIVE and live fully! From finding joy in the kitchen to overcoming physical and mental health hurdles, buckle up as the Alerje Team takes a trip to Virginia to explore more about Alpha-gal Syndrome, the "red meat allergy."
Recently featured on TODAY, hop on in as we learn from two innovators Thriving with AGS firsthand: meet Debbie and Candice, The “Two Alpha Gals!”
1. Howdy, Candice and Debbie! Tell us, who are the Two Alpha Gals, and how did you two meet?
Debbie: Candice and I met in 2017 at a mutual friend’s birthday lunch. When Candice ordered her salad very specifically (“No croutons, what’s in the dressing?”), I knew that we were destined to be friends. Not long after that, Candice went into a spiral of reactions, and she needed friends and family to come to be with her during the day. I was one of those friends. Candice eventually received her diagnosis of Alpha-gal syndrome (AGS), but after recognizing similarities in our symptoms, I insisted on being tested and was found positive.
Candice: We quickly realized that this condition is significantly more complicated than we had thought. Additionally, we discovered there was very little information available to the public on AGS- especially regarding day-to-day living. After several close calls with anaphylaxis, we decided it was imperative to share our journey and connect people diagnosed with AGS to critical information. That’s when we started blogging as Two Alpha Gals. It has since developed into a broader resource for how to thrive with Alpha-gal Syndrome without sacrificing joy!
2. How did you come to know that you may have Alpha-gal Syndrome?
Candice: The only tick that I saw was when I was bitten in 2007 when I was 8 months pregnant with my third child. The tick was smaller than a poppy seed and was on the outside of my right pinky toe. My husband and I had gone on a weekend getaway to Floyd, VA and stayed at a [cabin] that had a grassy meadow in the front that led to a creek. We had taken several walks throughout the property, and that is where I picked it up. As I was pregnant at the time, I initially thought it was a speck of dirt. But, after 2 days, I realized it was still there and had to have my husband investigate, as I could not bend very well at that point, haha. I know that he removed it properly with tweezers to be sure to remove all of the parts including the head, but we just threw it away. At the time, the doctors only measured [tick-borne illness by] getting a "bullseye" rash as indicating Lyme. [At the time], other tick-borne coinfections and AGS were not thought about, so I did not know to ask for additional testing.
Alerje Tips: Avoiding Ticks
Going camping or hiking outside? As Alpha-gal Syndrome is induced by ticks, some tips to avoid coming into contact with these pesky critters include:
Cover Up: Wear clothing that covers exposed skin, such as your arms and legs, and remember to tuck your pants into your boots.
Spray Away: Wear a tick repellent beforehand, such as DEET or Oil of Lemon Eucalyptus (OLE).¹
On Path: If present, stay on the walking trail or designated pathways and try to avoid areas with high grass.²
Check It: Check your clothing and areas such as your neck, behind the knees, around your ears, and other “exposed” areas for ticks when outdoors.¹ Remove ticks as quickly as possible if bitten.
- ¹ Centers for Disease Control and Prevention. Preventing Tick Bites. Retrieved from https://www.cdc.gov/ticks/avoid/on_people.html
- ² Maine Center for Disease Control & Prevention, Division of Disease Surveillance. Tick prevention and property management. Retrieved from https://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/tick-prevention-and-property-management.shtml
3. What are some symptoms you experienced during your journey towards thriving with AGS?
Candice: About a month after being bitten, I developed pretty severe [Gastrointestinal] issues… I had a gallbladder scan, visited a Gastroenterologist, and eventually ended up seeing an Allergist after I broke out in hives. That led to the diagnosis of a wheat, sesame and barley allergy. I eliminated all wheat, barley and sesame from my diet, and my GI issues improved, although I would still have random episodes after eating beef and pork (I thought I was just super sensitive to them). But when I arrived [at an allergist office at the University of Virginia], the doctor immediately suspected AGS.
My symptoms grew increasingly worse and often woke me up in the middle of the night, a classic indicator of AGS. In the most severe state, my symptoms included a racing heart, light-headedness, nausea, hives, and the feeling of impending doom. I also know now that my primary indicator of a reaction is a drastic drop in blood pressure.
Debbie: My symptoms began around 2007 or 2008, approximately 11-12 years prior to my diagnosis. After years of unsuccessfully seeing specialists for my symptoms (which included pain, brain fog, hives, and severe GI distress), identified similarities between Candice’s symptoms. After Candice received her diagnosis, I went to my allergist and insisted on being tested. My test came back positive. It wasn’t until after my positive diagnosis and several months of living without mammal products that an incident of exposure led to an anaphylactic reaction which also included a racing heart, chest and throat tightness, GI distress, and the feeling of impending doom.
4. What were some of the hurdles you overcame during your journey towards an Alpha-gal diagnosis?
Debbie: My biggest hurdles included the lack of information within the medical community and the public. Each specialist I saw would tell me there was nothing wrong with me, and I felt defeated. I would stop the cycle of trying to get a diagnosis until my symptoms became unmanageable, and then I would start again back at the beginning. Another big hurdle that we both attribute to the delay in diagnosis is that the symptoms of AGS mimic so many other conditions. Even those being tested for Lyme Disease and tickborne co-infections may miss an AGS diagnosis because it’s not [often] included on the panel.
Candice: After a tick bite in 2007, I can now trace my symptoms back to that 11 years prior to my clinical diagnosis. One of the biggest hurdles is the lack of understanding in the medical community, which prolongs a diagnosis when no one even knows to ask for the test. AGS can also lead to a plethora of medical bills, especially after being sent to the Emergency Room without understanding what set off the reaction.
5. What emotions and mental health effects did you experience during your journey to thrive: leading up to an Alpha-gal diagnosis through today?
"Through the process I began to find joy again and embraced the new path I was walking."
Candice: As [the symptoms] escalated, I became terrified not knowing what was wrong with me. I went from very active and rarely sick to flat-lined and went through the stages of grief as I had to let go of my daily routine. When I finally received a diagnosis, I felt relieved that I could begin the healing journey. I became determined to dig deeper. It took a lot of my own research, education, and understanding to confidently speak to my local providers, friends, and family about what I needed. Taking responsibility for my health and this journey helped me be a better advocate for myself and helped pull me out of the darkness. I have discovered a love for so many new things because of my AGS diagnosis!
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Debbie: I went from concern and frustration at the beginning of this journey to fear and despair, hearing from doctors that there was nothing wrong with me when I still felt so bad all the time, not being able to be the mom to my kids that I had been before and hoped to be. Like Candice, I also felt relief at receiving the diagnosis. For the first time there was finally something I could do about it, and I was empowered. Although this journey can be discouraging, we have found many silver linings. We have learned how to reinvent our meals, recipes, and habits and have discovered many new foods, restaurants, [and more].
"We are finding so much joy in this reinvention and in helping others."
Anaphylaxis can often imitate anxiety, so it’s important to nurture your mental health so that you can differentiate between the two. We like to use counseling, various forms of therapy, and tools such as meditation. We have [also] found community to be a critical part of living with AGS. We are so grateful to have each other to navigate this journey, and we hope to build a larger community so that people living with AGS have a resource for connecting them with others.
6. What are some of your strategies for Thriving with Alpha-gal Syndrome and preventing reactions?
Being Prepared
One of the most important things you can do living with AGS is be prepared. This means knowing what your reactions look like, carrying a tool kit with everything you need in the event of a reaction (e.g., antihistamine, auto-injector pen, etc.), and having a plan and support system in case of an emergency.
- Alerje Tip: When seconds count, and there when you need it most, find out more about Alerje’s Omniject smartphone-attached auto-injector under development.
Grocery Shopping
Grocery shopping and meal planning have taken on a whole new meaning. We have to find substitute products that we can use, sometimes having to eliminate entire recipes from our regular rotation. Some of us living with AGS are allergic to mammal byproducts as well, such as dairy, gelatin, and sneaky ingredients in medications, and mammal products don’t necessarily need to be eaten to cause a reaction. Those of us who are more severe have to avoid mammal products found in everything from beauty and health to household products.
Restaurants and Going Out
We also have to consider what exposure we might experience in restaurants, the homes of friends, or other establishments that might trigger a fume reaction. We now have to extensively plan and prepare whenever we leave the house, especially when traveling. For example, we pre-pack safe foods and snacks, just in case.
- Alerje Tip: Like many food severe allergies, preparedness is key when attending social gatherings. Read more on tackling food allergies in social situations.
7. How have you and those around you adjusted to THRIVING with AGS? How do you continue to find joy in the kitchen?
Debbie: Although my family still enjoys a steak (cooked on the grill outside by my husband), they have discovered that they don’t notice many of the recipes where I replace ground beef with ground turkey or vegan protein sources. And they all have found new favorites to love that I’ve introduced in my search for creative new meals, such as my safe vegetarian Pad Thai.
- Alerje Fact: According to the CDC, meat from poultry, fish, or eggs does not contain alpha-gal. Take care to avoid cross-contact with other ingredients containing alpha-gal.
Candice: One way my family has accommodated my allergy is by purchasing a grill outside for my children to use if they’re craving a burger or a grilled cheese sandwich. My family and I have enjoyed seeking out vegan restaurants when we travel, and my kids have found that they love the food as much as I do. One of my favorite recipes to make now is cashew chicken, but I prefer it with tofu.
"It was difficult at first, but now we enjoy the creative challenge of reinventing how we eat and live!"
And we are grateful for those in our families who understand and accommodate us. It’s difficult to explain the intricacies to everyone about what is safe and what is dangerous, but this allows us to thrive by being our own advocates and standing up for ourselves.
8. What is your ultimate hope for the future of Alpha-gal Syndrome and food allergies in general (Ex. More research, therapies such as Oral Immunotherapy, a cure)?
Because of the complexities of AGS, it is often not easily diagnosed. Our goal is to raise awareness so that others living with AGS may not have to endure a decade of symptoms without a diagnosis. However, there is still a long way to go. We need more research on the types of ticks that transmit disease and the way tick-borne diseases and other allergies present. We need much more awareness and education in both the medical community and the general public [in addition to] clear labeling and transparency in the food industry. Ultimately, we need our community to continue to grow so our voice and impact can cultivate change.
- Alerje Fact: Symptoms of Alpha-gal Syndrome may fade away over time in some patients. However, there is no current cure for AGS.
9. What advice would you give to someone who is on the journey to thriving with a rare food allergy? What does THRIVING with AGS mean to you?
Our advice to someone newly diagnosed with a rare or non-top 9 food allergy would be that it is possible to live joyfully. We strongly recommend finding a support system, as burdens are easier when shared. As patients, we have a right to compassionate healthcare, so don’t be afraid to ask for what you need. Thriving with AGS or a rare, non-top 9 food allergy means not only finding a way to live safely with the allergy, but finding a way to live JOYFULLY. Thriving is successfully navigating the new journey and being able to do so happily.
We want to note that we are still in the thick of things… but with preparation and a plan of action, we can face this new life confidently.
10. Your name, “Two Alpha Gals,” is a brilliant play on the condition itself. Can you share that story?
It’s funny how many people associate “alpha gal” with the idea of a strong female before they even know about Alpha-gal syndrome. When the concept of creating something came up, and we were trying to come up with a name, we felt it should boil down to exactly who we are - Two Alpha Gals.
"After surviving so many frightening experiences and facing so many things outside our comfort zone to fulfill our purpose, it turns out that we are [mightier] than we realized!"
Making Every Moment Count!
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Thriving with food allergies can be a journey of discovery, and even with a rare allergy to red meat, with careful planning, advocacy, and having your resources handy, it’s possible to Make Every Moment Count. Special thank you to Candice and Debbie for having us on our “stop” in Virginia and sharing their inspiring stories on what it means to Thrive with Alpha-gal Syndrome. Feel free to visit them at Twoalphagals.com and keep up with their socials:
The adventure continues! Buckle up as we continue our journey exploring what it means to thrive with a variety of food allergies and related conditions. Where do you think we’ll visit next on this adventure? In the meantime, check out Alerje’s other food allergy resources - including our new Facebook Community, Alerje True Grit, and tools coming soon for families navigating food allergies and therapies such as OIT.
More resources and information about Alpha-gal Syndrome can be found:
CDC: Alpha-gal Syndrome
CDC: Stop Ticks to Avoid Lyme and Other Tickborne Diseases
AAAAI: Alpha-gal and Red Meat Allergy
ACAAI: Meat Allergy
