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.

Lifestyle changes

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!

Alpha Gal Syndrome Chef Card

The chef card that Heather uses to alert restaurant staff of the dietary restrictions associated with Alpha-gal syndrome.

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.

 

Comments

    Author:
    Linda Iza
    Written:


    I am glad to see you have added this to your list of allergies. I (and two of my siblings) have had Alpha Gal for over five years. It is definitely a life changer

    Author:
    Tami McGraw
    Written:


    Great article! Thank you. I am one of many that figured out our AG diagnosis on our own.

    Author:
    Linda Perkins
    Written:


    Great article! Hoping more articles like these will make the public aware of the challenges of alpha-gal.

    Author:
    Almalinda Leiser
    Written:


    I’m so glad you got to share this article. this has helped me tremendously. I truly appreciate it. I was diagnosed with red meat allergy.

    Thank you so much

    Author:
    Sharon Bashore
    Written:


    Thanks for sharing your experience. I was bitten by a Lone Star tick two months ago.. I’ve been tested for food allergies since that bite. The tests came back saying I have no allergies. I’m not so sure. I also have Chronic Fatigue Syndrome. My CFS symptoms are similar to some AGS symptoms. I’m trying to get my head around my best course of action. I now have an EpiPen in case of a severe anaphylactic reaction that hopefully I never have.

    Author:
    Garth Wheeler
    Written:


    I was diagnosed with AGS in June, 2019. I went through very similar processes, being diagnosed with eczema, stress issues until my doctor recommended an allergist. He immediately diagnosed the AGS. My symptoms had increased to include anaphylactic throat/tongue swelling. My last severe episodes were from cross-contamination, so I have pretty much eliminated eating out. This is indeed a life changer, but I’m fortunate to have a wife supporting me and being creative with our new diet preparations. Thanks for posting.

    Author:
    Linda I Ehlig
    Written:


    I’m 54 was bit & had tick on my head for about 7-10 days after summer vacation in 1971 in Oregon. This cause me being sick & stay for almost 2 mths. I have always had a complicated medical issues. Now at 54 was diagnosed with low thyroid since 2013. Doctors are trying to get it under control. I’ve just had Colon Cancer Resection Surgery & now Cancer Free for about s month. People never realize how one little can wreak havoc in your life.

    Author:
    Michele Strayer
    Written:


    I have alpha-gal also for about 5 to 6 years now oh, and you definitely have to be your own advocate I’ve wound up in the hospital several times from eating out and questioning everything and still having reaction because someone didn’t know what they were talking about. It truly is a scary thing and is very life-changing. Thank you for your info it is very very helpful

    Author:
    Lisa Marie Sullivan
    Written:


    Thanks so much for adding Alpha Gal !! I was diagnosed this year but have had it years before diagnosis.

    Author:
    Lisa Marie Sullivan
    Written:


    Great article to by the way Thanks Heather !

    Author:
    Tammy haynes
    Written:


    I’ve have alpha gal now for 12+ years now. Went to doctors but they didn’t know what it was. 4 years ago got so bad ended up urgent care she sent me to allergy doctor he took blood work come back positive for alpha gal. Avoiding the beef, pork, dairy oh a whole list of food. Xolair shots, allergy shots, and alot of allergy pills. Getting better.

    Author:
    Shannon Windmeyer
    Written:


    Thank you for your information. I have almost entirely given up on eating out. It took me 2 years to figure out what was going on and now I am at just about 3.5 years since my exposure from the tick bite. I wanted to ask why carrageenan is listed on your mammal products list. I avoid all of the items in this list, but I didn’t think that carrageenan is a problem. Is it because carrageenan is often a tell tale sign that dairy products could be in something when eating out?

    Author:
    Heather Wilson
    Written:


    Hi Shannon,

    I am quoting here:

    “Carrageenan is composed of galactose residues, which are linked by alternating galactose-α-1,3-galactose and galactose-β-1,4-galactose bonds, and therefore the carbohydrate epitope to which anti-gal antibodies are formed is intrinsic to the chemical structure of carrageenan (Fig 1). Carrageenan resembles the naturally occurring sulfated glycosaminoglycans but differs by the presence of the galactose-α-1,3,-galactose bonds and the absence of N-acetyl groups.”

    This is why those of us with AGS avoid it. It can cause anaphylactic shock.

    I failed to mention I do carry an EpiPen with me for safety.

    Author:
    Julie Osman
    Written:


    Thank you for adding Alpha Gal allergy to your list. I have been diagnosed for two years now, and understand the fear and complex issues that come with any attempt at eating out.
    Thank you also sharing this testimonial.

    Author:
    Mary Jane Humphries
    Written:


    I just got diagnosed last week, September 2019
    I have been suffering with sickness and stomach cramps, vomiting for months, I thought I had a gulten intolerance, but turned out it was AGS, I can deal without the meat, ( except bacon 🙁 ) but the dairy I’m having trouble with, thought some I could deal with, but finding out not so much.

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