Life with Alpha Gal Syndrome
The story
I was diagnosed with Alpha-Gal Syndrome and it's ruining my life.
Google:
Alpha-gal syndrome (AGS) is a delayed-type allergic reaction to a sugar molecule called alpha-galactose (alpha-gal). It is primarily caused by the bite of the lone star tick (Amblyomma americanum).
Basically, with AGS, I can't have any mammal meat, or the byproducts. With AGS, you can develop an allergy to dairy and gluten as well. I'm dairy reactive as of 3 months ago. I thought it would be okay but it's not.
From the start.
Before I was diagnosed I noticed I was breaking out in hives, and they got bad. At one point I had to drive myself to the ER but my legs were so swollen they felt numb, it was terrifying. I had no idea why that was happening. I was eventually referred to an ENT Specialist to get tested for allergies. It was the standard allergy test and I needed bloodwork. Two weeks after the tests, I got the unfortunate news, I could no longer enjoy my favorite foods. I was devastated, depressed even. I was constantly in tears, barely eating, slowly slipping into depression. It took 3 months for me to finally accept that I could no longer have any mammalian meat or byproducts. At that point, I wasn't reactive to dairy or gluten, so it wasn't the worst. I was getting sick of eating chicken for every meal. I tried to cut meat completely but that just made me sick, and extremely weak.
With the help of my amazing fiancé, I started to get better mentally. I finally took back my life, I started working out, eating healthy balanced meals, it was amazing, until it wasn't. A few months before my 1 year check up for AGS, I started to just constantly be in pain again. It wasn't hives, it was the most painful stomach aches, mostly in my lower abdomen. I was freaking out, I didn't know what to do or why it was happening. Cut to my one year check in, I tell the Doc what I was feeling and all of my symptoms, then she gives me even more bad news: no more dairy.
It's been two months since dairy got cut from my diet and I'm struggling so much. People around me, at work, in class, even my own family, all keep calling me dramatic and tell me to suck it up. I CAN NOT JUST GET OVER SOMETHING LIKE THIS!! I went my ENTIRE life with no allergies, never been allergic to ANYTHING until now. I'm losing so much weight that I can't keep up with. I can feel myself slipping slowly. I've been in so much pain since not being able to have dairy, it's like my body is rejecting this diet. I have another appointment coming up soon, and I just have this feeling that Doc is gonna cut gluten out of my diet too. If that gets cut, I'll literally starve. Everything now tastes bland, no matter how much I season it. I try new recipes, my fiancé tries recipes and I just want to puke after eating anything because of how bad it tastes. I can't stay positive over this anymore. I'm sad and I'm sick of people telling me to get over it because I can't.
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Points of view
man, that's seriously rough; dealing with allergies out of nowhere feels like getting blindsided by life, and people who tell you to just "suck it up" really don't get how life-altering this can be.
Wow, that sounds incredibly challenging 😔. It's undeniably difficult to adjust to such drastic dietary changes, especially when it feels like you're constantly losing more foods you once loved. What makes it even harder is the lack of understanding from people around you; they often have no idea how physically and mentally exhausting managing a condition like this can be. It must feel like living in constant uncertainty, never knowing if another beloved food will suddenly become off-limits. Keep focusing on finding moments of joy outside of your diet, and lean on those who really understand and support you through all this 💪.