From Tick Bite to Children’s Book: Erin’s Alpha-Gal Journey

Beyond the Bite is an interview-style series that shares real stories from real people navigating life with alpha-gal syndrome. From diagnosis to daily routines, each story reveals the personal side of this often misunderstood allergy.

When Erin Sherry first got a tick bite in the summer of 2014, she was pregnant, preoccupied, and understandably focused on more immediate things. Like growing a human being.

What followed were years of stomach pain and other symptoms that Erin thought were due to stress, postpartum hormones, nursing, or the sleep deprivation that goes hand-in-hand with motherhood. It wasn’t until her husband heard about alpha-gal syndrome from a coworker that everything began to make sense.

Erin has her hands full managing her diagnosis while raising four children and working as an educator, but she still turned her condition into a mission. She’s the proud author of Alpha-gal Gal Takes on the World, a children’s book about AGS. Erin is a force of nature wrapped in humor, honesty, and positivity, and I’m excited to share her alpha-gal story with you.

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Symptoms and Diagnosis

For many people, the road to an alpha-gal diagnosis is anything but straightforward. Erin experienced years of unexplained symptoms making everyday life a challenge.

Sage: When (or how) did you first realize something was wrong?

Erin: I was first bitten in 2014. I was pregnant with my 3rd child, and every time I would go to the OB, I would tell her about the tick bite on my shoulder that was so itchy and not healing. She asked me all the Lyme questions, and we moved on. I went on to have my 4th child, pregnant in 2016, and was having a lot of mysterious symptoms. I never felt good when I ate and had achy joints, GI issues, shortness of breath, and rapid heart rates.

Sage: What symptoms made you seek medical attention? 

Erin: After having my 4th child, my symptoms really kicked in, and I felt horrible. I could not keep any weight and felt sick all the time. I would look seven months pregnant after eating and would feel horrible.

Sage: Did your doctor know what AGS was, or did you have to advocate for yourself? 

Erin: My doctor did not know, but they were open to testing me when I asked. My husband had a coworker who had heard of AGS and told him it sounded like me. But I never had hives or anaphylaxis, so I dismissed it. A few months later, someone on an online support group for IBS said I may have AGS, so I got tested. (Hubs thought that was hilarious, since I never listen to him.)

Sage: What was the most surprising part of the diagnosis process? 

Erin: How easy the blood test was. If we had done that years prior, it would have saved a lot of pain.

Following an Alpha-gal Diet

Sage: What favorite foods did you have to give up after your diagnosis?

Erin: At first, I had a hard time changing my diet. I was mad.

Sage: Dasie Schulz, another Beyond the Bite guest said, “Food mourning is real” and she’s so right! On a positive note, do you have any new, alpha-gal friendly favorite foods?

Erin: I ate an ostrich steak and loved it! I would have never tried it if I didn’t have AGS.

Sage: See, there you go! If you had a magic wand and could eat one thing safely again, what would it be? 

Erin: Going out to eat and not having to worry about cross-contamination. I would still choose AGS safe foods, but I would not have to worry if they were in contact with anything unsafe. That would be amazing. And cheesecake!

Sage: I hear you on the cheesecake! My oldest daughter is a dairy-sensitive alpha gal, and cheesecake is her favorite food ever. Are there any food brands or products you absolutely swear by now? 

Erin: I love Wegmans because they label most things, so I look for the vegan symbol on the packaging. I have enjoyed the Rebel Cheese boxes even if they are expensive. And Amaroo Hills emu and ostrich. 

Daily Life Adjustments​

Sage: Have you had to change personal care products, like lotions or makeup?

Erin: Yes, I have switched to all vegan beauty products and brushes.

Sage: Are there any hidden sources of mammalian ingredients that surprised you?

Erin: My makeup brushes really shocked me. I would feel so itchy even after switching to a vegan makeup.

Sage: What’s changed most in your daily routine since being diagnosed?

Erin: I’m not as concerned about my appearance as I may have been in the past. Maybe that is age as well.

Sage: Have you had to teach your family or kids how to support you?

Erin: Yes, and I am proud that they are aware of food allergies. I never was as a teen or young adult, and I’m glad they have had this experience. They know about cross-contamination and the seriousness of it all. I know that will help them as they continue to grow.

Sage: Speaking of kids and alpha-gal, tell us more about your book!

Erin: I just wrote and published my first children’s book, Alpha-Gal Gal Takes on the World. It’s available on Amazon in paperback, hardback, and Kindle. I wanted to write this so children dealing with AGS felt seen in the literary world and also to help spread awareness in both adults and children.

Sage: Living with alpha-gal stinks, and my heart always breaks a little extra when I chat with parents whose young children have just been diagnosed. I love that you’ve given our community this amazing resource!

The Emotional Impact of AGS

Sage: What has been the hardest part of living with AGS?

Erin: Not having the freedom to eat whatever, whenever. Social gatherings like picnics can be the hardest when there is really nothing that you can eat. I was fume reactive, and even smelling burgers grilling was a trigger. That is a huge change of life.

Sage: What has helped you stay positive?

Erin: My diagnosis wasn’t something as devastating as cancer or a terminal illness. I’m incredibly grateful for that. Yes, I had to give up things like bacon, but I don’t have to go through something as intense as chemotherapy. It really puts things into perspective. And honestly, even if I did have to face something like chemo, I’d do my best to stay positive. Life is too short not to try and find light in the darkness.

Looking Ahead

Sage: What do you hope more people will understand about alpha-gal?

Erin: It is not just a red meat allergy. It changes how you live and how your family lives.

Sage: If someone just got diagnosed today, what would you want them to know

Erin: Take a deep breath. You are going to be OK! Now you know what is making you feel so poorly, and you have the power to change that. Yes, it will be a learning curve, but it will get easier — I promise! Start with the easy things, like alpha-gal friendly proteins and then keep a journal of things that bother you. Itchy scalp? Check your shampoo and conditioner.

Thank you for sharing!