In late October, I was diagnosed with Alpha-gal syndrome which is an allergy to mammalian products. I can’t eat any meat products including dairy. I also removed gelatin and glycerin unless they come from fish or vegan sources. Vegan products can’t have carrageenan.
It sounds simple, but it isn’t. There are so many things made with meat products, and there is no label requirement to inform people that the gelatin or glycerin is from mammals. For example, did you know that many brands of toilet paper have lanolin in them? I didn’t.
Since my diagnosis, I’m been on a crash course of learning about Alpha-gal syndrome. I feel like I’m getting a handle on things, but I still show some symptoms.
What does Alpha-gal syndrome have to do with gardening?
A lot actually. If you garden, hike, hunt, forage or do anything else in the woods, you are exposed to tick bites. I wasn’t too worried about Lyme Disease or Rocky Mountain Spotted Fever because I could always tell when I was bit, and I pulled off the ticks quickly.
However, Alpha-gal is injected by the tick when it bites making many people allergic. Originally, doctors thought only the Lone Star tick was a problem, but now, they realize the syndrome is spread in other parts of the world by different tick species. Although it isn’t medically proven, I suspect the same is true here.
Protect against tick bites.
If you’re outside a lot, or live in woodsy areas, I want to encourage you to wear insect repellent and insecticide clothing like Insect Shield or one of the other brands. Or, you can buy permethrin products to spray on your own gardening clothes. From the CDC, “Permethrin is a synthetic pyrethroid similar to naturally occurring pyrethrins which are extracts from the chrysanthemum flower.” It is supposed to safe for humans over two years old.
I hate wearing DEET repellents, but you can be sure I will from now on. Most experts agree that the more often you are bitten by ticks, the more severe Alpha-gal can become. Mine is plenty severe.
What were my Alpha-gal symptoms?
I get asked this a lot, and let me stress that everyone’s symptoms can be different, but many are similar. Here are mine:
- Stomach pain. Every morning and sometimes in the middle of the night, I woke up with stomach pain. It was so constant I sadly got used to it.
- Extreme joint pain. I was taking a lot of NSAIDS and Tylenol every day, and it barely touched the surface of the pain. I told my doctors, and they assumed it’s because I’m overweight and 61. I would try to explain that this pain was different.
- Extreme fatigue. I would sleep at night and wake up extremely tired. I couldn’t get going until around 10:00 a.m. after three cups of coffee. I am still tired, but better than I was.
- Walking through sand. I described my fatigue as walking through sand. My limbs felt heavy, and I could hardly move. My doctors just told me to walk 30 minutes a day and to lose weight.
- Flu-like symptoms. I often felt like I had the flu. I was achy all over and extremely tired especially if I had to go outside the house that day. By evening, I could barely get off of the couch.
- Swollen hands and feet. My hands and feet stayed swollen all the time. I couldn’t wear my wedding ring, and my shoes were too tight no matter what I did.
- Itchy Hands and Feet at night. Since Alpha-gal is often a delayed reaction, I would wake up in the middle of the night with itchy hands or feet or have them at bedtime. I thought it was dry skin or eczema because I have that too, but no eczema was showing in the itchy spots.
- Weird itchiness. I still have this probably because I have a cat (mammal), but I don’t want to give up my Masha.
Those were my most prevalent symptoms. I eventually went to a thyroid specialist–because I was so tired–and she ran every test she could think of. Of course, she’s out of my network, and I had to pay for some tests out of pocket, but I finally got some answers. I was amazed to learn I’m allergic to all meat, dairy and meat byproducts. As soon as I quit eating meat, my pain lessened. I am still quite itchy, but I’m hopeful that things will get better over time if I’m not bitten by additional ticks.
My hands and feet are no longer swollen.
Alpha-gal is a true food allergy.
Alpha-gal is a true food allergy, and can trigger delayed anaphylaxis which is how many people discover they have it. I’m so grateful I haven’t had an anaphylactic shock episode. I carry two epipens now because anaphylaxis can happen if you’re exposed. You don’t have to just eat the mammalian product either. Some people become sensitive to cooking fumes, and there’s always risk of cross contamination.
I now realize waking up in the middle of the night with gastro-intestinal symptoms and itchy hands and feet was Alpha-gal. Plus, the fact that I could immediately tell I was bitten by a tick was probably because I already had Alpha-gal.
If you’ve been diagnosed where should you start?
In my opinion, the best place to start your journey is the Alpha-gal Information website. It has current information and is very helpful.
I also suggest that before you join Alpha-gal Facebook groups you do a little research yourself. I quickly joined several, and reading people’s stories and despair quite honestly caused me some fear. Members share excruciating information including having to go to the hospital in the middle of the night over and over.
If you are ready to join, there are several good Facebook groups that are monitored by very caring people.
More Alpha-gal information
In the video below, Dr. Scott Commins, who is an Alpha-gal expert explains why people get the allergy and how to protect yourself.
Alpha-gal is a silent epidemic.
I believe Alpha-gal is a silent epidemic because while it is still not well known, if you go to the self-reporting map, you’ll see how widespread it is. The wooded areas of Oklahoma, Kansas, Arkansas and Missouri are covered. I know of two other people in Logan County where we live who have it.
So, with all that in mind, here’s my PSA. Protect yourself from tick bites as much as possible. I know gardening season in Oklahoma is hotter than Hades, but wear socks and closed shoes if possible and make sure all of your clothing has permethrin on it. Also, spray with DEET insect repellents.
I don’t want you to need to go down this Alpha-gal rabbit hole like I did, but if you already have it, I’d love to hear from you.