By Jane – Country Patient, Reluctant Advocate, and AGS Trailblazer Whether I Like It or Not
Hey there,
Let me just say this plain: if you’ve ever walked into a doctor’s office with your heart in your throat, symptoms in your notes, and a nagging feeling you’re about to get side-eyed… you’re not alone.
When I first brought up alpha-gal syndrome to my doctor, he looked at me like I’d asked him if cow ghosts were giving me hives. And bless him, he’s a good man — but he hadn’t heard of it. Not once. Not even in passing. I had to teach my own doctor what it was before he could help me.
So if you’re nervous about that first “I think I have alpha-gal” conversation — honey, I get it. Let me share what helped me make it through without walking out or bursting into tears.
Before the Appointment: Do Your Homework (Even If You Shouldn’t Have To)
It’s not fair that we have to be our own experts, but that’s the world we’re in. Here’s what I did before I walked into that exam room:
- Printed out reliable info from places like the CDC, NIH, and allergy associations
- Highlighted my symptoms and when they started
- Made a simple timeline of tick bite → symptoms → reactions to meat
- Wrote down foods or meds I reacted to
- Kept a symptom diary for at least a week
Even if your doctor’s never heard of AGS, that info gives them something solid to work with. Think of it like bringing the puzzle pieces — you just need them to help you fit ’em together.
What to Say (and What Not to Let Them Dismiss)
Start simple. I said:
“I think I may have developed something called alpha-gal syndrome. It’s a tick-borne allergy to red meat and sometimes dairy. My reactions have been delayed but pretty severe. Can I walk you through what’s been happening?”
Try to stay calm but firm. This is your body, and you deserve answers.
If they brush you off or say, “It’s just stress,” or “Food allergies don’t work like that,” you can politely (or not-so-politely, depending on your day) say:
“I understand it’s rare, but it’s recognized by the CDC and NIH, and I’ve had consistent reactions. Would you be willing to look into it further or refer me to an allergist?”
Getting Tested (And What That Really Means)
There’s a blood test for AGS that checks for alpha-gal IgE antibodies. It’s not a perfect test — you can test positive and not react, or test low and still have symptoms — but it’s a solid start.
Ask your doctor to order:
Alpha-gal IgE blood test (ImmunoCAP test)
Sometimes labeled as: galactose-alpha-1,3-galactose IgE
Not all labs offer it, but most big ones (LabCorp, Quest) can do it if your provider asks.
If Your Doctor Isn’t Listening…
Here’s the hardest truth: some doctors just won’t get it. And that’s not your fault.
If you’re not being taken seriously, don’t waste your energy trying to convince someone who’s not open. You deserve a provider who hears you and wants to help — not one who pats you on the head and sends you home with a vague “maybe try antacids.”
Ask for a referral to an allergist or immunologist, preferably one with experience in tick-related conditions.
Jane’s Bottom Line
I never wanted to become a medical advocate. I wanted to raise ducks, plant tomatoes, go camping, and not get sick from a dang hot dog. But life had other plans.
And here’s the wild part: once I got a doctor who listened, things started to change. We put a plan together. I started to feel less crazy, less scared, and a whole lot more in control.
So go in prepared. Go in strong. And remember: you’re not being dramatic — you’re being your own advocate.
And that, sugar, is something to be proud of.
With love and a stocked-up tick spray shelf,
Jane