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.
Here are more symptoms and when to know to get tested.
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.
Also check out Two Alpha Gals on YouTube, their podcast and on Instagram. I’m actually meeting with them this week via Zoom for some additional help. They offer that service for a fee.
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.
I’m sorry that you’re going through this. Is it something that will wear off eventually? I’ve gotten more tick cautious over the last two summers, but not 100%. But your journey will remind me to be tougher. Best of luck.
A small minority of people have symptoms that wane over time if they aren’t bitten again. You’re smart to be even more vigilant. ~~Dee
It took 2 years, and yes, night trips to the er for a diagnosis. Not at the hospital, they simply laughed it off! So I am also allergic to glutamates which so much complicates things and leaves me with very little to choose from. I have eliminated soaps, lotions, supplements, etc that weren’t vegan. But here is my question, since my reaction is more serious I can’t even wear leather work gloves and my gp wanted me to research about dirt and compose. I doing landscaping and dirt always works through gloves. Transplanting seedling, I never wear gloves. Have you had a problem with reactions from playing in the dirt?
Sorry! I’m just seeing your comment. I’ve never had any trouble working in the soil. However, something occurred to me about all of this. I’m concerned about manure, especially cattle manure, since that’s what is in Back to Nature and some other compost mixes. For my potting soil, I use Happy Frog, and I believe it has bat guano. Bats are mammals, so that may be an issue too. There is so much to learn about this syndrome, and I’m taking it day by day. Instead of leather gloves, could you wear cloth gloves that have rubberized palms and fingers? So far, leather doesn’t bother me, but a lot of others things do. It’s a life changer for sure. Hang in there. ~~Dee
Dee, What a rabbit hole! Happy you have some answers. Now I have a question……can dogs get AGS? This is not a new rabbit hole for you, but if you could point me in a direction, I would so appreciate it. Enjoy your resting/seedling/reading/dreaming season. “See” you on the podcast.
Hi Lin, I don’t think so because only humans and primates don’t have the ability to digest the sugar. Here is a link to the NIH about dogs. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6789585/. However, dogs can get other tick-borne diseases.
That joint pain! It took me more than a year after my alpha-gal diagnosis to link it to the gelatin in the gel caps of the vitamins/supplements I take daily. Replacing with all vegan versions was life changing. The pain was completely gone within 24 hours and I felt like a new person! Sage Scott, https://sagealphagal.com
Hi Sage, I’ve now replaced almost all of my medications and supplements with vegan versions. It made all the difference. I love your website, and I appreciate all of the research you’ve done into this syndrome we all share. ~~Dee
Yikes, Dee. Sorry to hear this. One of my sisters has an autoimmune disease and the same things happen: long time to diagnose and a lot of self-education. Thanks for sharing this.
Hi Linda, I just hope my experience helps others. It’s been a journey, and I’m still on it. Every day gets better though. ~~Dee
I first heard about this before they had an official name for it from the folks around me here in Cherokee and Adair Counties. While I knew a little about it, I didn’t know some of the other symptoms you’ve described and had to put up with. So, I appreciate the bit of detail you went into, so as to keep an ever wider eye on ourselves, here. We live in the part of the state in which ticks are an everyday experience. Perhaps not so much in the towns, but most of us live out away from the sidewalks. A couple of points on the vectors of this disease, i.e.: Ticks. My Boss (wife) could never understand why I was so militant about Bambi wandering up close to the house.She thought, and not entirely wrongly, that I was most upset at their treating my gardens as a buffet table. The main reason is because Bambi is a major tick uber, as the kids say….and they drop off and pick up loads of them every night. I didn’t realize how many, until one morning a couple of years ago, I found a dead fawn in our orchard. While I can’t tell you How it died, and Lord knows I looked for evidence, what made me shiver in the heat was that when I rolled the fresh carcass over, its skin was crawling with the little vampires. Think Alfred Hitchcock or Twilight Zone on steroids. Somewhere between hundreds and thousands, without exaggeration. I ran to get our tractor bucket and remove the poor thing before any more leaped off their deceased mount, and spread out over our place. SO, I don’t let Bambi get/feel comfortable here, anymore, and to others which feed them corn or daylilies or rows of green beans, be wary of any area they bed down in. There’ll be a LOT MORE vampires where Bambi has stopped for a while. The second point I can offer comes from when we gardened and lived in LeFlore County. (Another Tick haven.) We had them down there, also, and they were maddening as they loved our pets as much as we did…just not for the same reason. And, if’n they’re jumping off Fido or Kitty, they’re soon jumping on us. IF you can, get some chickens and let them run free. We used Banties, to lessen the garden damage, but the point is that when we introduced those fowl to our place there, the ticks all but vanished. They went from being a serious seasonal threat, every year, to us only finding one every couple or three years. (But, we also didn’t have the deer population down there as we do here.)
Hi Jesse, yeah, I can’t stand deer either. I appreciate hunting season and hunters who keep the deer population under some control here. I do see more of them now that our dog passed away. ~~Dee
Dee, I am so sorry that you are having to deal with this Alpha-gal syndrome. I had not ever heard of it until you started mentioning it in your post. Thank you so much for this very informative and detailed post on this issue. I was already concerned about getting bit by a tick but, now I am fearful of it. I do spray my shoes and clothing with DEET but, I wonder if that is enough protection. I am glad to hear you are feeling better and now know what was causing all of your pain and discomfort. Is this something that ever goes away and will you be able to eat red meat and dairy some day?
Hi Decah, so there’s a lot of speculation about whether I’ll ever be able to reintroduce meat and dairy. Honestly, at this point, the dietary changes are the least of my problems. Finding medication (eventually we compounded most of mine) without mammalian products has been the hardest part so far. I’m also fume reactive now so I’ve had to change my lifestyle some. Still, it’s good to know what’s going on.
Regarding your protection question, I think buying socks and pants from Insectshield would be a good idea if you garden in a wooded or rural setting. Wearing Deet is probably not enough protection. Permethrin clothing is essential out here in my opinion. ~~Dee