Candice Matthis spent over a decade trying to figure out what was wrong with her after a tick bite in 2007.
鈥淚t was tiny and black, smaller than a poppyseed,鈥 the New River Valley resident said. 鈥淪hortly thereafter, my symptoms began, and I started my journey of trying to figure out why I was so sick. I was quickly diagnosed with a wheat allergy, so for 11 years, every time I would get sick, I thought I had been contaminated by wheat.鈥
Debbie Nichols does not remember the tick that transmitted her alpha-gal in 2007 or 2008, but she spends a lot of time in nature, and her home is on a small farm in Blacksburg where ticks are common.
鈥淚 would identify my symptoms 鈥 brain fog, joint pain, GI distress 鈥 then try to pin down a specialist to help me,鈥 she said. 鈥淚t wasn鈥檛 until 2018 that I heard about AGS, though I suspect I鈥檝e had it since my symptoms began, over ten years before my 2019 diagnosis.鈥
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The two women met at a mutual friend鈥檚 birthday party in 2017 and quickly hit it off.
鈥淲hen I became acutely ill in 2018, Debbie was one of the friends who I called on,鈥 Matthis said. 鈥淚 was waking up nightly with the room spinning and my heart racing with what I now know was anaphylaxis. My husband couldn鈥檛 stay with me all day, every day, so Debbie would come and sit with me, cook for me, and take care of me.鈥
Matthis said when she finally received her diagnosis of alpha-gal syndrome (AGS) in 2019, Nichols told her that she had similar symptoms.
鈥淚 had made the connection to red meat around 2015, but I continued to see specialists who all told me there was nothing wrong with me, I even had my gallbladder removed in 2018 to try to alleviate my gastrointestinal (GI) symptoms,鈥 Nichols said. 鈥淪o, when Candice received her diagnosis, I called my immunologist and insisted on being tested for AGS.鈥
Nichols said that when the nurse called to give me my test results, her only advice was, 鈥渄on鈥檛 eat beef.鈥
鈥淒ebbie and I realized that we were divinely brought together.鈥 Matthis said. 鈥淲e also quickly learned that living with AGS was going to be challenging.鈥
Debbie Nichols, left, and Candice Matthis walk on the 麻花视频 River Greenway at Green Hill Park in 麻花视频 County. The two women launched the Alpha-Gal Foundation in 2024 with a mission to foster community, empower patients and educate the world on AGS.
Matthis and Nichols started blogging as 鈥溾 after being diagnosed with alpha-gal syndrome. Since then, they鈥檝e been sharing tips and tricks on navigating life while living with the condition they contracted from ticks that makes them allergic to mammal meat and mammal byproducts.
The Gals also host a popular podcast, 鈥淚n the Tall Grass,鈥 which offers support for living with alpha-gal syndrome, including resource guides, workshops, and a Food Allergy Mentorship Program.
Seeing further need for education and support, Candice and Debbie launched the Alpha-Gal Foundation in 2024 with a mission to foster community, empower patients, and educate the world on AGS.
The 鈥淭wo Alpha Gals鈥 also offer a Food Mentorship Program which focuses on supporting individuals with dietary restrictions, particularly those with alpha-gal syndrome, which is an allergy to red meat and other products derived from mammals.
Alpha-gal syndrome, or AGS, is a tick-bite-induced allergy to red or mammalian meat, and people with AGS can be triggered by hundreds of mammalian meat products and byproducts (MMPBs).
According to the Virginia Department of Health website, AGS is a serious, potentially life-threatening allergy to certain kinds of meat that some people develop after being bitten by a tick. Evidence suggests that AGS is primarily associated with the bite of a lone star tick, but other kinds of ticks have not been ruled out.
The allergy involves a carbohydrate called galactose-伪-1,3-galactose (also known as alpha-gal). This carbohydrate is found in mammalian meat products such as beef, pork, venison and lamb. Alpha-gal can also be found in some other products such as milk and milk products; gelatin made from beef or pork and some pharmaceuticals.
A CDC report showed that between 2010 and 2022, more than 110,000 suspected cases of AGS were identified. But the agency estimates that as many as 450,000 people may have been affected by AGS as of 2023, the most recent year for which official data is available.
In Virginia, health officials don鈥檛 know how many people are affected because the state hasn鈥檛 tracked it.
A bill that passed unanimously during the 2024 General Assembly session added alpha-gal syndrome to Virginia鈥檚 list of reportable diseases. Mandatory reporting of alpha-gal syndrome in Virginia is expected to begin before the end of the year.
According to advocates who worked to get this bill passed, which included Matthis and Nichols, Virginia is an AGS hotspot. Over 20% of residents in some areas of the state have the allergic antibodies (IgE) to alpha-gal associated with AGS, and up to 9% of these individuals may have full-blown AGS.
The allergy develops when a sugar molecule, often transmitted by the lone star tick, is introduced to the bloodstream. This molecule is common in non-primate mammals but is foreign to humans. The immune system reacts by attacking the molecule and, in doing so, causes allergic reactions that range from hives to gastrointestinal upset to life-threatening anaphylaxis.
According to the Virginia Department of Health website, evidence suggests that AGS is primarily associated with the bite of a lone star tick, but other kinds of ticks have not been ruled out. The lone star tick can be found throughout Virginia but usually lives in areas below 1,600 feet in elevation. This tick is an aggressive biter and has the potential to transmit other serious diseases such as ehrlichiosis and Rocky Mountain spotted fever. The adult female is best recognized by a white dot, or 鈥渓one star,鈥 on the center of her back.
Once sensitized, the body treats every reintroduction of that molecule as a threat. It may take several weeks or months before the body develops a reaction to alpha-gal, making it difficult to diagnose.
The allergy was first discovered by Dr. Thomas Platts-Mills, a doctor and researcher at the University of Virginia. It was at UVa, in 2007, that Platts-Mills first discovered a red meat allergy transmitted by ticks.
It started when he realized that the sugar alpha-gal was an ingredient in the cancer drug cetuximab and was causing allergic reactions in patients from certain geographic areas. Expanding on that, his team found that the sugar alpha-gal was also connected to a mysterious red meat allergy cropping up in similar areas. After meticulously testing patients, they determined that the bite of the lone star tick caused the allergy.
It wasn鈥檛 until 2023 that a case-control study with the Centers of Disease Control and Prevention proved the association with bites from the lone star tick, though the tick had been a suspected carrier for many years.
The best way to prevent AGS is to avoid tick bites, including treating clothing with permethrin, or wearing tick repellent that contains picaridin, DEET, or oil of lemon eucalyptus when outdoors, especially if you are in wooded areas or in high grass. Also be sure to carefully check your body when you come back inside. If you find a tick attached to your skin, remove it carefully with tweezers and see your doctor if you develop a rash, fever or allergic symptoms.
Tick prevention guide
A small percentage of the people who have been bitten by the tick can develop allergies. Both adults and children are susceptible. The allergy can manifest as hives or itchy rash, nausea or vomiting, gastrointestinal upset, cough, shortness of breath or difficulty breathing, diarrhea, stuffy or runny nose, sneezing, headaches, a drop in blood pressure, swelling of the lips, throat, tongue, or eye lids (angioedema), and in certain individuals, anaphylaxis, a potentially life-threatening reaction involving multiple organ systems, which may require urgent medical care.
鈥淲hile the both of us had multiple symptoms, many patients will only have one or two,鈥 Matthis said. 鈥淭here鈥檚 even a strictly (GI) variant of AGS, and studies show that GI doctors who test their patients with IBS for alpha-gal syndrome are getting many positives. But the good news for these patients is that changing their lifestyle can bring relief.鈥
鈥淲e don鈥檛 just have to avoid beef, we can鈥檛 have any mammal products: beef, pork, lamb, dairy or byproducts,鈥 she added. 鈥淣ot to mention sneaky sources of mammal in our household and beauty products. It鈥檚 hidden everywhere, including over the counter and prescription medications and even wine. And the source of ingredients doesn鈥檛 have to be labeled.鈥
If diagnosed with AGS, Nichols suggests working with your health care provider to develop a plan specific to you for when a reaction takes place. She said a great place to start is a whole food diet and/or vegan foods and products, and then work other foods and products back in as you learn the sources of their ingredients.
鈥淎lthough these are not always 100% alpha-gal safe, they provide a good jumping off point,鈥 Nichols added. 鈥淭hese complexities are why we developed our Food Allergy Mentorship Program to coach and support alpha-gal patients based on their individual needs.鈥
鈥淟iving with a food allergy is all about sacrifice, but Candice and I are self-admitted foodies, and the thought of avoiding so many of the things we love was devastating, so we began to figure out how we were going to live with our diagnosis without sacrificing joy.鈥
Nichols said living with AGS can be challenging, but through empowering the AGS community to understand that life can still be joyful and by raising awareness of alpha-gal syndrome, we can bring both relief and help to those living with this diagnosis.
For more information about the Two Alpha Gals, go to their website at .
