Helpful Resources for People with Alpha-Gal Allergy
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 a relatively new food allergy caused by the lone star tick that’s largely isolated to the Eastern United States.
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 weekday wine.
These are the resources I wish I’d known about in March 2021, when I first began navigating the vegan + eggs + poultry + fish diet that was forced on me by a lone star tick bite.
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. If you’ve been living with alpha-gal for a while, check out their alpha-gal syndrome research page on Facebook to keep up with the latest medical news.
Centers for Disease Control and Prevention (CDC) Fact Sheet
The CDC’s tick center includes high-level information about alpha-gal syndrome including a fact sheet for healthcare providers. The information is pretty basic compared to what’s available at AGI, but it’s a great resource to share with your primary care physician if he or she isn’t familiar with alpha-gal.
Mayo Clinic Website
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.
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.
Alpha Gal Support Group
With nearly 15,000 participants, this members-only Facebook group offers a safe place for alpha gals to discuss the good, bad, and ugly that goes with the alpha-gal allergy. Get nearly real-time responses from fellow alpha gals from around the world about everything from alpha-gal friendly ingredients to alpha-gal medical experts near you.
The Alpha-Gal Kitchen
Whether you dine out or cook at home, every meal is a new adventure when you live with a food allergy. This public Facebook group is a great resource for people living with alpha-gal to share their alpha-gal friendly recipes and experiences without reservations.
Other Helpful Resources for People Living with Alpha-Gal Syndrome
Have a favorite alpha-gal resource not listed here? Drop me an email at firstname.lastname@example.org and share your tip!