Alpha-Gal Syndrome: the other reason to hate ticks
It’s summer, and many of us are dusting off our hiking boots as we head to the hills to enjoy some time in the great outdoors. Lurking in the beautiful grasses of the countryside, however, are a few summer spoilers like ticks, which have been a source of concern for many years due to Lyme Disease. Did you also know that tick bites can be associated with a red meat allergy? This is where we want to introduce you to alpha-Gal syndrome. Have you heard of it?
Our second story in the #EmpoweredPatient program with Allergy Insider features two friends, Debbie Nichols and Candice Matthis, who were both diagnosed with alpha-Gal syndrome (AGS) – a type of serious, potentially life-threatening allergy that develops to red meat and animal by-products, caused from a Lone-Star tick bite.
Through their diagnosis, they became advocates and co-founded Two Alpha Gals, a website that provides evidence-based lifestyle tips, tools and resources for the tick-borne disease community.
What is alpha-Gal Syndrome?
Alpha-Gal syndrome is a red-meat allergy that gets its unusual name from a sugar molecule found in all mammals except for humans and some primates. In humans, it may trigger an immune response, which on subsequent exposure can cause mild to severe reactions after consumption of red meat, organ meats, and other products made from mammals. Complete avoidance of red meat and mammalian byproducts is necessary as there is no cure.1 alphagalinformation.org
Alpha-Gal syndrome has steadily grown as a public health concern. However, many people may not even realize the connection between a tick bite and an allergy to red meat. As a result, people may experience the impact of alpha-Gal symptoms, unaware of the underlying condition.
Finding support close to home
How can a support system benefit you when faced with a new diagnosis and help you become an #Empowered Patient?
The fact that Debbie and Candice were diagnosed months apart from each other, lived locally and had each other to lean on felt “divine” to them. As you will see with these Two Alpha Gals, giving and receiving mutual support helped them build resilience and a sense of purpose to take control of their health.
Living with alpha-Gal: a diagnosis that’s not so simple
Candice’s journey began with GI issues shortly after discovering a tick attached to her toe. An office visit helped to discover that there was a connection between the symptoms she was experiencing and her tick bite. Meanwhile, Debbie, who had been friends with Candice for several years, saw her suffer from nausea, brain fog, and more symptoms. So, when Debbie recognized the similarity between her own symptoms and Candice’s experiences, she wondered if the same deck of cards would be handed to her.
When Debbie’s alpha-Gal diagnosis was confirmed with a blood test, the nurse from the immunologist’s office called and instructed her to cut out beef. But even after eliminating it from her diet, she still felt sick.
Why was Debbie still feeling lousy after she ditched hamburgers? After many late-night Google sessions, Debbie and Candice discovered that there are many hidden sources where mammal derivatives are found. Hello, bone char in sugar!
Choosing your alpha-Gal “first responder”
Aside from their immediate families, Debbie and Candice are each other’s designated “first responders,” a term they’ve come up with to mean that they are aware and ready to assist each other in the case of a reaction.
“A first responder should be someone you know such as a family member, friend or neighbor who knows what your reaction looks like and the steps to take to help you when a reaction occurs.”
Candice
In instances when Candice was experiencing frequent reactions, Debbie would come to the house to sit with her and monitor the situation. She helped Candice distinguish between anxiety and a reaction. Once it was determined it was an alpha-Gal reaction, Debbie helped coach her through the steps to take to get her reaction under control. If necessary, she was prepared to administer an epinephrine/adrenaline auto-injector and call 911. Although Debbie does not react quite as often or severely, Candice has reciprocated during Debbie’s allergic episodes.
Being an empowered patient means finding solutions
The support system that the two friends built started from the moment Debbie’s blood test returned positive for alpha-Gal. One of her first thoughts was no more marshmallows?! Her favorite dessert, the rice krispy treat’s main ingredient is marshmallow. This is an alpha-Gal food to avoid because it contains gelatin which can be made from hoofed animals. So when Candice, who had been the first to receive her diagnosis, got wind of Debbie’s news, she sent her a bag of vegan marshmallows. Afterward, they went to work in the kitchen and created their own alpha-Gal safe version together.
Understanding what they couldn’t eat gave them the power to focus on the foods they could eat in a reinvented way. By finding solutions that worked for them, they were able to change their narrative and recreate joy.
A support system is much more than having someone simply know your allergy protocol. They also help you find the silver lining in your new normal.
Building your alpha-Gal support group
If you live with AGS and other food allergies, you understand that food is only one component of managing your health. Debbie and Candice have become “emotional supporters” to each other.
Candice is fume reactive, which means that she has to be careful about possible fumes such as artificial candles or cooked mammal products/byproducts that may trigger a reaction when traveling or dining out. Debbie has supported her friend by listening and talking through the grief of sacrifice and loss.
On days when it feels overwhelming to advocate their needs to medical professionals, friends and family, they encourage each other to keep moving forward.
When you become more comfortable being vulnerable in front of those you know and love, it allows more confidence to ask for what you need in public spaces, ultimately empowering you to be your own advocate.
-Two Alpha Gals
How do you build an alpha-Gal support group that allows you to thrive and not just survive?
- Online: Two Alpha Gals website, Facebook groups or other.
- Medical teams that validate your desire to thrive. Do not give up on finding your team!
- A support group does not only consist of family and friends. Reach out to your trusted neighbors or community members to help you feel less alone in your journey.
An empowered patient does not have to go at it alone
Debbie and Candice say it best, “Ticks suck, but life doesn’t have to. If you’re surrounded with supportive people, you can release the worry and focus on finding JOY!”
If you suspect you may have alpha-Gal, Debbie and Candice advise you to get tested. “We recommend taking your health into your own hands because doing so empowered us to shorten the time from symptoms to diagnosis to relief.”
You can still enjoy nature! How to avoid ticks
- EPA-certified products like permethrin actually kill ticks. Treat your shoes and clothing with a repellent such as permethrin, reducing your chances of getting bitten by a tick.
- Take additional cautions, such as long pants and tall socks. Make tick checks a part of your routine after being outdoors.
- Being in nature can be healing. Don’t live in fear, be aware and learn how to avoid ticks.
Share your #EmpoweredPatient Story
Share your story about a friend or special someone who helps support your #EmpoweredPatient health journey. We would love to hear from you! Share with us on social media, email us or comment below!
This article is a part of our #EmpoweredPatient program in partnership with Allergy Insider, a trusted allergy resource with the most up-to-date research—all fact-checked by a team of healthcare providers. The stories within this program are personal experiences from patients shared with permission and are not intended to be direct medical advice. To learn how to share your #EmpoweredPatient story and join the community, check out the Empowered Patient Program.
