I didn’t anticipate writing this out here, but I felt the call and so here we are. I don’t even know where to begin, because I am still not sure what many of the moving parts are in this story. I think it started around 2016, when I started feeling unwell. It was a really peculiar thing in that it seemed really specific. I couldn’t do any intense physical exercise without crashing. It didn’t happen every time, and so I would start feeling great and strong and then the very next workout, I would crash so hard that I would end up not being able to exercise in any way for 2 weeks to a month. I remember telling friends that I was scared because I just never felt good, ever. My body felt constantly run down, and it felt impossible to know if I was feeling anxious and depressed because I felt bad or vice versa. It was really bizarre and the one doctor I consulted was patently unhelpful. There were no tests run, and a reluctant sigh of an offer for antidepressants. I was depressed, but I was mainly confused. I had two ear infections back to back, which is unheard of for me. I’d never had an ear infection in my then almost 40 years of life. I got an intense stomach flu. I then got the actual flu, some godawful strain of it that had me crawling to the bathroom for two weeks and basically imprisoned on the top floor of the house because I was too weak to walk down the stairs safely. I should have gone to the hospital, in retrospect. My mom died right after that. I think she got that same flu I had and it was too much for her weakened and already hospitalized body. I found out I was pregnant two days before she died, right when I finally felt well enough to visit her in the hospital. I didn’t know I wouldn’t see her again.
It was a time. But I kept on just going. We bought a house and moved onto our 4 acres. I nursed and raised that baby, and our other with the most minimal of support systems you could ever dream of. I am so grateful for the friends and family that we do have, but it isn’t enough to remotely function as our village. And I just kept feeling bad. All the time. Tired, weak and anxious. Inflamed. That was the only word I could ever come up with to describe how I felt in my body- inflamed. I got rashes on my chest, dyshidrotic eczema on my fingers, my scalp felt tight. I felt so itchy and physically uncomfortable in my body. I was miserable, and I had no clue as to why. I constantly feared the worst, which didn’t help with my increasingly intense anxiety. I went to see a few doctors and I insisted on getting a few tests run. All my tests seemed fine. My thyroid was fine. Kidney and liver function fine. Major vitamin and mineral levels fine. No markers for Lyme. All the things fine. White blood cells a liiitle elevated, but you’ve probably just been fighting an infection. Nothing to worry about. Fine. You’re fine. I was so not fine and I didn’t know what to do. I just felt sick and tired.
I didn’t know what to do, I couldn’t afford to keep paying insurance copays for doctors that were not helping me, who truly didn’t believe that anything was wrong with me. I honestly didn’t even believe myself. My symptoms were so vague and so weird that most of the time I sincerely thought that the issue had to be that something was wrong with me mentally because it clearly wasn’t anything else. I ended up really leaning into my diet, because I felt like that was the one place where I had some level of control over how I felt. I felt like I could at least nourish myself well and do the right thing. Food and how it affects us on a physical, mental and even spiritual level has always been a core interest of mine. Understanding how humans have such diverse diets, and what the core elements for optimal functioning is such an interesting rabbit hole, so I thought I at least had the skills to do something here. I had already been eating gluten-free for over 5 years at that point, mainly because I figured out a long time ago that my body didn’t do well with gluten- it started to give me a rash on my chest and arms when I ate it, so I stopped. I had been vegan for almost a decade, most of those years heavily into the raw vegan diet. It was such a paradigm shift for me that even though I don’t think that diet was great for me long term, I am so grateful to have had the experience of a radical dietary shift like that. After my first pregnancy and giving birth, I knew that being vegan wasn’t going to work for me. I felt it in my bones a long time before I was willing to actually add in animal products again.
So, at this point I was gluten-free, and tried to eat an anti-inflammatory diet. Bone broth, local grass fed beef, local pastured pork, homegrown veggies and wild greens, fermented foods, lower glycemic gluten-free or paleo style baked goods. Driving to Texas in order to buy raw milk. I love food and I’m not perfect, but even our treat and impulse splurge foods were “organic and gluten free” versions of whatever. Fancy expensive supplements and vitamins to fill in any gaps or blind spots in my diet. We were beginning our journey with gardening, homesteading- learning how to grow the most nourishing foods with our own hands. We were still avid foragers, spending lots of time in nature harvesting and preparing wild foods. I was finishing the chapter of my life driving to Austin and back to wrap up my training as a clinical herbalist. I had what felt like *all the tools*. I felt like I was doing the objective right thing.
I still had the exact same symptoms. I agonized over where I could make better choices. Was it my objectively wild sweet tooth sabotaging my health? Was I drinking too much coffee and burning out my adrenals? What was I doing wrong? I just knew it was some failure on my part- some blind spot I had, something obvious I was missing out on and why was I so stupid? What the hell was wrong with me?? Why did I feel like shit all the time?? It wasn’t a good time. A few months before my Alpha-gal diagnosis, I had plans to find a rheumatologist and see if we could figure out an autoimmune diagnosis. Everything seemed to point in that direction.
It carried on like this until June of 2021. Some relatives came in from out of town, and we decided to get barbecue. I figured it was as safe of a food as I could find- if I didn’t use the bbq sauce and just got meat and veggies it would be gluten free. Maybe they’d have a baked potato. It was fine. And then that night, hours after our meal my skin started to feel like it was burning. I looked down at my arms and saw welts forming all over. My chest started burning. I ripped my shirt of in the mirror and saw the welts all over my chest, my face, my legs, my stomach. My whole body was burning and covered in what I quickly realized were hives. I didn’t know what to do so I ran a bath and got in. It didn’t help. I was in so much pain and crying and finally decided to drive myself to the emergency room. It was an ordeal, but I finally made it there and they pumped me full of steroids and antihistamines. The hives went away. I felt better. They told me to go to my GP to get a referral for an allergist. I did that, and it was only by miracle, an afterthought when I was about to leave after my allergy testing that I mentioned spending a lot of time outside and tick bites. My panel came back that I was reactive to red meat which isn’t common but also didn’t raise any alarm bells.
I’m allergic to a whole LOT of things, apparently. Pumpkins, peanuts, corn, shellfish, dairy, citrus fruits, basically every single pollen under the sun, pet dander. So many things. But most importantly, I am Alpha-gal reactive. I have an anaphylactic allergy to all mammal foods, including dairy, and some seaweeds like carrageenan which set of the chain of responses in the body. I have to admit that I don’t feel like I have a deep grasp on the specifics of it or a full understanding of the mechanisms by which this wild ass allergy work.
What I do know is that all mammals, except for apes and old-world monkeys, have a carbohydrate or a sugar that is called Alpha-gal (galactose-α-1,3-galactose). Sometimes, via the saliva transmitted during a tick bit, we can become sensitized or reactive to that carbohydrate. Most allergies are in response to a protein and so Alpha-gal is unique in that is a sugar. The specifics of the way Alpha-gal reactions work means that it is incredibly hard to determine cause and effect when it comes to triggers. Most allergic reactions happen quickly after ingesting the trigger food, but with Alpha-gal, reactions are delayed. They usually happen between 2-8 hours after eating mammal foods, but in some cases can even happen much later than that. In the years that I was dealing with feeling so bad, not once did it ever occur to me that it could be from meat.
It’s really weird to have a tick-borne illness. It’s also weird to know that I’m allergic to beef and pork and that we ate so much of it. It’s weird to look back on how awful I felt for such a long time. We are a little less than a year out from my diagnosis and so far, I have avoided any major reactions. I have had a few minor ones- nursing my toddler after she had beef and in response to something from a vegan AND gluten free restaurant, from what I suppose was carrageenan.
I feel like I am healing. I don’t feel inflamed all of the time. I can push myself hard physically (in a good way!) and have it be strengthening and beneficial to my body not a reason to shut down completely. I am beginning to have energy again for the more complex aspects of being human. I feel positive about my life and my future. It’s honestly been incredibly destabilizing to me to know that all of my physical symptoms (and a large part of my mental/emotional ones too) were due to an undiagnosed and untreated allergy. It feels like such an insignificant thing- like I don’t have much of a right to feel any type of way about it. I think for me, the traumatic parts of this diagnosis are not so much the diagnosis itself but the years that I suffered unnecessarily from it.
Cases of Alpha-gal syndrome are currently increasing, especially in the Southeast where we are. If you are someone who spends any time outside and you know you have been in contact with ticks and you have strange symptoms that are kind of like allergies but feel more autoimmune then definitely get checked. Not everyone who gets bitten by a tick will become sensitized to the Alpha-gal carbohydrate and develop Alpha-gal syndrome. It’s not entirely clear if the allergy eventually goes away or not, and it is recommended to monitor your levels via a blood test.
I have planned a post that goes more in depth about this food journey with Alpha-gal syndrome. I’ve had to overhaul the way I eat, cook and even think about food. It’s really hard and it’s still a constant battle to feed my family but mostly myself. I still have an idealized way of eating in my mind, and for the most part it isn’t a possibility for me. I cannot rely on fast food, ever. I have to be prepared and take responsibility for myself 100% of the time, preparing my own food from scratch to make sure I stay safe. Tentatively, there are a small handful of restaurants I have eaten at in the last year, and I haven’t had a reaction. I can’t let my guard down though. I am meant to always carry my epi-pen.
I’d also like to talk about herbal support I have relied on, both during the height of my illness and in the last year. Obviously, herbs can’t cure Alpha-gal syndrome, but there are so many ways that they can support in many ways, both on a physical and emotional level.
I’d love to answer any questions you have about Alpha-gal. This isn’t a well-researched informational post. It’s meant to be my personal experience, and because of that I’ve let it be what it is without editing it into a well-planned narrative. It’s rough, and that’s fitting of this whole experience. And really, the hard truth is that I got bitten by the tick that transmitted the fluids that sensitized my body causing Alpha-gal syndrome while I was outside- foraging, gardening, walking, sitting, maybe teaching even. It’s relevant to this blog because I guess fundamentally there are risks to being outside in nature. It doesn’t mean it’s not worth it to do so. I don’t regret my lifestyle. It hasn’t made me rethink the time I spend outside. Just in the last few days, my family and I have found more than one tick crawling on our bodies at bath time. It’s that time of year. We aren’t staying indoors all summer though- just taking extra precautions to find them before they latch on.
