The two Virginians met at a mutual friend’s birthday party in 2017. Candice Matthis and Debbie Nichols hit it off at “nice to meet you.” But little did they suspect one day they’d have a bond forged in the same challenging diagnosis: alpha-gal syndrome.
Nor could they have imagined launching a blog called Two Alpha Gals and then in 2024, establishing the Alpha-Gal Foundation. Their nonprofit aims to support and educate those with alpha-gal syndrome (AGS).
In this allergy, the bite of a lone star tick sets off reactivity to alpha-gal, a sugar present in mammals’ meat and byproducts like dairy or gelatin.
Both women began to have alpha-gal symptoms in 2007. But having no idea the cause of either of their conditions, each endured years of debilitating symptoms. There were myriad specialist visits, tests and scopes to no avail. Doctors were mystified.
The revelation of alpha-gal syndrome (AGS) began with Matthis in early 2019. She’d been having thyroid issues and went to a health provider who put her on several supplements.
On the fifth day on them, Matthis woke up at 5 a.m. “I was seeing double, the room was spinning. I thought I was having a stroke,” she recalls. It turned out the supplements contained bovine ingredients and came in gelatin caps.
That terrifying reaction gave her a determination to find out what was wrong. She’d already figured out a connection to eating meat. By now, a decade after her issues began, there was talk of an emerging condition called alpha-gal allergy. It was discovered in 2008 by an allergist at nearby University of Virginia.
Matthis pressed hard to get to UVA’s clinic for an alpha-gal blood test. Her insistence paid off: the test in 2019 was positive. Nichols would be diagnosed that same year.
Building Alpha-Gal Support
The two friends weathered the shared experience of thinking you’re never going to feel well again. They’d soon discover – yes, you can.
The two would learn much about alpha-gal syndrome and how to manage it. Their condition starts with a lone star tick’s bite. That can trigger the immune system to begin producing IgE allergy antibodies to the alpha-gal sugar found in red meat (from beef to pork, venison and lamb). For many, even dairy and gelatin (like Matthis’s supplements) set off reactions.
Symptoms often start with itchy palms and feet or hives. Gastrointestinal symptoms include diarrhea, cramping and vomiting. In anaphylaxis with AGS, there’s often shortness of breath or a drop in blood pressure. What gets tricky is that AGS symptoms often come on hours after eating. The connection to food may not be obvious.
Matthis and Nichols launched the Two Alpha Gals blog in 2019 to support others with this challenging diagnosis. It’s grown into a social platform, with a podcast, educational resources, and even a mentorship program.
With the new nonprofit Alpha-Gal Foundation, they plan to expand their reach, support and awareness-raising. The foundation is already advocating for legislation aimed at adding alpha-gal as the tenth top allergen and require it to be labeled on packaged food.
The Alpha Gals developed four pillars to support others with AGS: survival, reinvention, resilience and joy. That last word “joy” is palpable whenever you hear this pair talk. They had years of living in pain with few clues to what was wrong. But in managing their AGS well, they demonstrate how good life can be.
“We want to help people learn to live safely, but also to go back to living their fierce lives,” Nichols says. “Even though it might not look exactly like it did before.”
Alpha Gals: Candice’s Story
Matthis, 44, recalls noticing a tiny tick bite on her toe in 2007, after walking in tall grass. She was nine months pregnant with her third child.
She didn’t think much about it at first. Then a month later, she began developing gastrointestinal symptoms after dinner on a regular basis. By morning, she’d be suffering with severe diarrhea and almost passing out.
During the day, Matthis was home alone with a newborn, as well as kids who were 2 and 4 years old. So the front desk staff at her husband’s work would stay on a phone line with her while she was in the bathroom. They were checking on her – just in case she did pass out.
Matthis had many specialist visits and tests with few answers. There was some improvement in her symptoms after she was diagnosed with food allergies and removed wheat, barley, rye and sesame from her diet.
But over time, the symptoms returned. “I remember waking up in the middle of the night several times with my blood pressure tanking,” she recalls. “I was in a constant loop of reactions.” She noticed she’d sometimes feel like passing out after eating pork or steak. So she started avoiding them.
Then came the scary anaphylactic reaction in 2019 to the supplements with gelatin (a meat byproduct). It flattened her; it took months to regain her strength.
In April 2019, Matthis saw the allergy specialist at UVA. She ran the blood test for alpha-gal allergy, based on the history of symptoms. The positive result was the start of a new chapter of life.
Nichols had been by Matthis’ side during the months she was suffering, providing practical and emotional support. Finally, her friend had an answer.
Alpha Gals: Debbie’s Story
Nichols, 46, does not remember getting bitten by a tick. But she spends a lot of time in nature, and her home is on a small farm in Blacksburg, Virginia – a region where lone star ticks are common. The chances of a bite are high.
Like Matthis, Nichols had bad bouts of gastrointestinal symptoms and diarrhea. But she also experienced some quite different symptoms. In her early 30s, she began experiencing terrible shoulder and hip joint pain. An orthopedic specialist found no issue.
She also began having occasional brain fog. There were incidents where she felt so foggy “that I couldn’t remember the number on my house.” She worried about early onset dementia. But a neurologist would say all was fine.
Nichols had countless doctor visits, MRIs, blood work, X-rays, and even had her gall bladder removed in 2018. “I went through a cycle of seeing specialists and them telling me nothing was wrong.”
The symptoms always started up again. She did make a connection between the GI issues and red meat, so she began to eat it sparingly.
One night in 2015, she woke up with terrible stomach pain and connected it to steak she’d eaten earlier, at a wedding. “It felt like my stomach was going to rip in half, it was excruciating.”
After that, she avoided steak, but continued eating burgers and dairy, and symptoms returned.
When Matthis called with the news that she was diagnosed with alpha-gal syndrome, Nichols decided to test for it, too. There was some symptom similarity. At the least, a test might rule out alpha-gal. However, the test came back positive.
Nichols had to remove meat and dairy from her diet, which is challenging. But one day it occurred to her. That distressing brain fog? It had vanished.
AGS Support and Education
Once the two friends had their alpha-gal diagnoses, “we quickly realized there wasn’t enough information out there,” Nichols says. Soon after, the Two Alpha Gals launched their blog.
Personal experiences, tips, recipes, and product recommendations are featured. Their podcast called “In the Tall Grass” focuses on personal experiences and interviews with experts and those with AGS.
Their educational resources, include guides covering topics such as self-advocacy, creating a support system, cleaning out your pantry, tick prevention, and strategies for shopping and dining.
Through their nonprofit, the Alpha Gals are also developing a workshop “to raise awareness among healthcare workers,” Nichols says. They want the healthcare community to know what signs and symptoms to look for in patients. That way, they’ll know when to administer a blood test for the alpha-gal allergy.
The pair knows that their frustration with the time it took to get a diagnosis is far from unique. A 2023 CDC survey of U.S. healthcare providers revealed that 42 percent were not even aware of the alpha-gal allergy. Another 35 percent of the 1,500 providers surveyed had heard of it, but lacked confidence in their ability to diagnose the condition.
Mentoring the AGS Community
The Two Alpha Gals take education a step further with their novel mentorship program. This is “two on one” consulting to help clients navigate practical challenges, develop skills to manage the disease and learn to celebrate wins.
“The program is very specific to each individual,” Nichols says. “We focus on what they need the most.”
One former mentorship client earned her own space on the website, Peyton’s Corner, so she can help support fellow teens with AGS. Peyton Owen, 16, and her mom Stacey, live near Nashville, and both have AGS. They originally sought help from Nichols and Matthis in early 2024, after Peyton was diagnosed with AGS in 2022.
The Two Gals helped mom and daughter learn tips for navigating the day-to-day ins and outs of living with AGS, plus finding recipes. The mentorship program motivated Peyton to want to help other teens dealing with the challenges of AGS.
With Peyton’s Corner, the teen says she wants “to spread a sense of joy despite, and solidarity because of, our diagnosis.”
Alpha-Gal Food Labeling Bill
The guessing game of reading labels to try to determine whether food is safe for people with alpha-gal syndrome is very frustrating, Matthis says. The need for label transparency is the motivation for why the two women are among those pressing for new legislation.
In August 2024, New Jersey representative Jefferson Van Drew introduced the Alpha-gal Allergen Inclusion Act (H.R. 9382) to Congress. The bill would require the FDA to declare alpha-gal as a major food allergen. It would amend the Federal Food, Drug, and Cosmetic Act, which requires packaged foods to clearly label the top 9 allergens.
Matthis and Nichols are encouraging the community to submit a “take action” form to their representative in the U.S. House of Representatives to become a cosponsor of the bill.
“We’re encouraging constituents to make their voice heard and have impact on moving the bill forward,” Nichols says. The bill is gaining cosponsors – 28 as of early December 2024. It is expected to be re-introduced in the new term starting January 2025.
In the meantime, the Two Alpha-Gals hope to continue to build the community for people living with AGS. “We want to be a place where people feel welcome, and to help alleviate the loneliness,” Matthis says.
Related Reading:
The Trigger Behind Many Cases of ‘Mystery’ Anaphylaxis
Milk Allergy 101: High Rates in Kids, Confusion, Cross-Reactions
