The Struggle to Find Alpha-gal Resources

While my primary care physician was familiar with alpha-gal syndrome and didn’t hesitate to order an alpha-gal syndrome blood test upon my request, she didn’t have much advice to give me when the test results were positive. I was told to avoid mammalian meat, but I already knew that about the alpha-gal allergy. 

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, especially when it comes to a relatively new food allergy caused by the lone star tick that’s largely isolated to one half of the country. So it’s no surprise that the CDC shared these results from a survey of 1,500 primary care physicians, pediatricians, physician assistants, and nurse practitioners: 

  • 42% of the healthcare workers had not heard of alpha-gal syndrome,
  • 35% reported they were “not too confident” in their ability to diagnose or manage patients with AGS, and
  • among those who were aware of AGS, 48% said they did not know the correct diagnostic tests to order (Hint: It’s alpha-gal panel test code 10555 at Quest Diagnostics and test code 650003 at Labcorp)

And so I learned many lessons the hard way. For example, I didn’t know to check my vitamin supplements for gelatin. So it took a while to identify my vitamin C chewable and my vitamin D supplement as the cause of an allergic reaction. And I had no idea that some winemakers use gelatin in the clarification process causing me to feel extra crummy any time I enjoyed a glass of my one-time favorite wine.

Since my diagnosis in March 2021, alpha-gal has been increasingly covered in the news. And there are a growing number of helpful alpha-gal resources for those forced into navigating a vegan + eggs + poultry + fish diet forced on them by a lone star tick bite.

Helpful Online Alpha-gal Resources

Alpha-gal Information (AGI)

The Alpha-gal Information site is maintained by a group of people with alpha-gal syndrome dedicated to raising awareness and providing information about alpha-gal. This website offers a helpful checklist for the newly diagnosed and a list of alpha-gal physician experts to help you find an alpha-gal specialist near you.

Alpha-gal Alliance Action Fund (AGA)

The recently formed Alpha-gal Alliance Action Fund works to raise the voices of those affected by alpha-gal syndrome. The non-profit is dedicated to advancing policies that will improve the lives of alpha-gals with a focus on healthcare, food, education, prevention, and research.

Additional Online Alpha-gal Resources

Other helpful online resources for alpha-gals include:

  • AAAAI Website. As one might expect from the American Academy of Allergy Asthma & Immunology (AAAAI), the alpha-gal red meat allergy appears in their conditions library where you can learn more about its symptoms, diagnosis, and treatment.
  • FARE Food Allergy Academy.  While much of the content on the FARE site is geared toward the the “big nine” major food allergens, there is a free, hour-long webinar with expert tips for preventing and managing this tick-borne food allergy.
  • Mayo Clinic. The Mayo Clinic is a highly-respected medical center in Rochester, Minnesota. Not only is their alpha-gal syndrome information more detailed than the CDC fact sheet, but alpha gals can create a medical profile and request an appointment online.

Alpha-gal Groups on Facebook

On Facebook, you’ll find a wide range of groups dedicated to alpha-gal syndrome. There are regional groups, topical groups, and more. Most Facebook groups are private. To participate in these groups, you’ll need to click the “join” button and likely answer a few simple questions. The questions are typically designed to ensure the group members share a common interest, like living in a specific region of the United States, traveling with alpha-gal, or being fume sensitive.

Here are some of my favorite Facebook support groups for alpha-gals:

Topic-Specific Facebook Groups for Alpha Gals

Range of the Lone Star Tick in the United States

Location-Specific Facebook Groups for Alpha Gals (United States)

Connect with alpha gals in your community by joining up for a location-specific Facebook group near you.

Arkansas

Illinois

Kansas

Kentucky

Maryland

Missouri

Minnesota

Mississippi

New Jersey

New York

North Carolina

Oklahoma

Ohio

Tennessee

Virginia

West Virginia

Wisconsin

Location-Specific Facebook Groups for Alpha Gals (Outside of the United States)

Australia

Canada

South Africa

United Kingdom

Other Helpful Alpha-gal Resources

Beyond websites and Facebook groups, you may find these other resources  to be helpful as you navigate life with alpha-gal syndrome.

Reddit

Am I Missing Any Important Resources?

Have a favorite alpha-gal resource not listed here? Drop me an email at hello@sagescott.com and I’ll add it to the list!

Thank you for sharing!