How a Tick Changed Me: My Life With Alpha-Gal Syndrome
[This AllergyEats Blog post guest was written by Heather Wilson, an Alpha-gal awareness advocate.]
I am lying in bed, and I can’t move. Tears are involuntarily streaming down from my eyes. I am trying to call out to my husband for help, but the sound doesn’t form. The last thing I remember is willing the horrific head pain away. And then, luckily, the next day I wake up.
My name is Heather Wilson, and in July of this year I was diagnosed with Galactose-alpha,1-3, galactose, better known as Alpha-gal Syndrome (AGS), or the Mammal Meat allergy.
The Journey to an Answer
About two years ago, after eating dinner I developed severe hives. They came out of nowhere, and they formed every single day following for a matter of nine months. Accompanied by digestive issues, in addition to the hives, my life was a cycle of vomiting, diarrhea and days’ long constipation with no explanation as to the cause. I visited doctors who told me my issues were eczema, stress-related or irritable bowel syndrome. I was also told there wasn’t much I could do about it other than take pills to either speed up or slow down my digestive tract. These didn’t seem like acceptable answers, so I declined the medications.
Though I ate very clean, I became ill in the evenings after I was through eating for the day. I was frustrated with being sick and tired, so I searched for answers myself. In my research, I came across a nutrition regimen that involved eliminating a number of items from my diet that have been known to cause gastric issues and swelling around the joints and muscles. After thirty days, these items are reintroduced, one item a week, to observe reactions. My doctor okayed it and my journey to see if my issues were food-related began.
After about a week into my elimination diet, I began feeling better, though I was still hit with severe headaches and nausea every now and again. One great summer day, my husband, stepdaughter and I grilled beef burgers and after enjoying the sunshine from our deck, I took a shower a few hours after eating. While standing in the shower, I felt like someone took a hammer and hit me over the head with it. It had not occurred to me that the burger could be the culprit.
Finally, A Diagnosis
I was back in my doctor’s office and after I described my symptoms, he recommended I see an Allergist/Immunologist. I am also a three-time cancer survivor, so my health history sometimes complicates medical visits and seeing a specialist at that point felt like the right move.
I was lucky enough to find Dr. Tina Merritt in Bentonville, Arkansas, who happened to also have Alpha-gal syndrome. When I described my symptoms [which can vary for each individual], she was the first medical provider who did not greet me with skepticism or a “you’ll have to live with it” mentality. In fact, she listened intently and told me that what I was describing sounded like Alpha-gal syndrome. I had never heard of it before, but I was grateful for some sort of hope that I may just be getting answers soon. Dr. Merritt began with skin prick testing which showed a reaction to a number of things like wheat, peanut and several types of grasses and trees. She sent me to the lab for bloodwork the very same day, and two days later I had the answers I’d been waiting on for two years. Dr. Merritt’s suspicions were confirmed. I was AGS positive. The bloodwork also confirmed peanut, wheat, soy and a number of other allergies that were never present prior to my diagnosis. While it wasn’t the most optimal answer, it was an answer. And that is more than I’d had previously. While I had eliminated peanut, dairy, wheat and soy six months prior to my diagnosis, I was still eating beef and other mammalian meat like pork and venison. And then it hit me. Every time I ate those things, angioedema and severe gastric issues occurred. AGS reactions are often delayed since food takes time to go through the entire digestive system. My life changed that day. And it was all caused by a tick…
The Lone-Star Tick and Alpha-gal Syndrome
Before I made the move from coastal San Diego to Northwest Arkansas, I had never even seen a tick. I had a misinformed notion that only people who did not keep up good hygiene would get ticks. Looking back, I realize how ignorant that must seem. My husband and I own land in the Ozark Mountains where families of deer roam through, we live near several farmers with cows, and we hike often, so my exposure to ticks is likely greater than if I’d lived elsewhere. Since 2016, I’ve been bitten by several ticks, so I don’t know exactly when I contracted AGS, and there is no exact way to tell. In fact, not much is known about Alpha-gal syndrome, but researchers are on the path to learning more.
What we do know is AGS is caused by reactions to a sugar called alpha-gal found in mammalian meat. Recently, the University of Virginia’s Department of Microbiology, Immunology and Cancer Biology also discovered that those of us with AGS have a greater number of immune cells known as B cells. It is these white blood cells which produce the antibodies that release chemicals which cause allergic reactions to meat. I am hopeful we’re on our way to more answers. [More detailed scientific information can be found at these links: Dr. Scott Commins interview & August 2019 discovery.
I feel very fortunate that I had already changed my eating habits prior to my diagnosis. It can feel very drastic from one day to the next to entirely change your lifestyle. It even becomes frustrating and sometimes sad to give up things you used to enjoy and love.
Eating out can also be a significant and frustrating challenge. Cross-contamination and lack of knowledge about Alpha-gal syndrome remain major concerns. I mention my allergies to mammalian meat (handing servers a detailed chef card with what I can and can’t eat to bring to the kitchen), as well as peanuts and wheat, and I stress that these are not preferences, but necessary avoidances. Some restaurants will refuse to attempt accommodations due to liability concerns and while others assure me that they will make best efforts, there are no guarantees. I’ve asked servers and restaurant managers what ingredients are in various dishes only to be told they don’t know and did not know how to look up the information. As someone living with a life-threatening food allergy, I have to advocate for myself and my safety anytime I risk eating out, so I avoid it as much as I can while at home. Because I travel for my career, I take the time to plan ahead, phoning restaurants and chefs to ensure there will be safe choices for me. I also sometimes shop at the grocery store once I get to the area where I’m staying and request a refrigerator for my room to keep safe foods in. Even grocery shopping means you must examine labels thoroughly. It is surprising that mammalian products are found in things like toothpaste, shampoo and other toiletries, wine, beer, over the counter medications and cosmetics. Taking it a step further, we must also learn how to translate labels – gelatin, carrageenan, glycerin, casein, whey, glycerides, lactic acid, lactose, oleic acid, lecithin, pepsin, suet, and so much more!
Treatment and Cure
The only “treatment” is not to consume any mammalian products or mammal derivatives. These products and derivatives include beef, pork, lamb, dairy, and other related foods. [Safe on the list are chicken, turkey, duck, fish, shrimp, eggs, and more.] It’s interesting that for many of us, our avoidance list includes dairy. In addition, many of us will develop other allergies at the same time, as I have with peanuts, wheat, and soy. My doctor recommends re-testing once a year. Some people with AGS have actually gone into remission, though it’s not always permanent. It’s also important that we not get bitten again for fear that any progress our bodies have made may become undone. Alpha-gal is unique for each individual. Thus, treatment involves personal choices we must make with our physicians regarding if and when we should reintroduce mammalian products. To date, there is no cure or treatment in medication form.
For now, this is my new normal and I am giving thanks for the answers and the opportunity to be aware, while educating others on my path to live a new normal that involves feeling great again.
Bio: Heather Wilson is an events professional living in Northwest Arkansas, advocating for Alpha-gal Syndrome awareness. She shares safe recipes on her blog Country Life, City Wife and enjoys admiring her husband’s gardening and hiking with their Great Pyrenees rescue and bearded dragon. The ocean will forever be her first love.
Did You Know? When you set up an AllergyEats profile to start rating restaurants, you can check “Alpha-gal” or over 100 other non-Top 8 allergies to help us build our database and eventually offer more dining choices for everyone, even those with less common allergies.