HOWELL – Kim Conway, a 60-year-old local woman, wears a medical alert bracelet clasped to her wrist in case she’s unable to speak for herself. Meat, once a staple of Conway’s diet, has become a formidable threat to Conway’s health.
Her meat allergy is so intense that it can propel her into anaphylactic shock. Confirmed as alpha-gal syndrome, Conway’s nightmarish diagnosis came following a tick bite in May of this year.
As stated by the Centers for Disease Control and Prevention (CDC), alpha-gal is a sugar molecule prevalent in most mammals. Those with an alpha-gal syndrome diagnosis face the greatest risk of reaction upon consuming or encountering meat directly. Yet, complications can also emerge from consumables such as meat-flavored broths, dairy items, and foods containing gelatin.
Dr. Chirag Patel, who has offices in Brick and Wall, is a board-certified physician in the field of allergy and clinical immunology. While alpha-gal syndrome might seem rare to some local doctors, Patel became familiar with it when he trained at the University of North Carolina Chapel Hill. It was there he met Dr. Scott Cummins, one of the original people to discover alpha-gal.
“In the south, they found that it was unusual that there were a lot of people having a reaction to this molecule called alpha-gal, which is a carbohydrate,” said Patel. “Up until that point, all food allergies were protein allergies.”
Patel further explained that the T-cells in the immune system do a good job of recognizing proteins but not sugars. Researchers also discovered that most of the people developing the allergic antibody against the carbohydrate also had experienced tick bites. Upon further evaluation, the tick salvia turned out to have alpha-gal molecules.
Kim Conway’s home borders on the woods, and she’s had a number of tick bites in the past. (Photo by Stephanie Faughnan)
“They determined that when a tick would bite someone, it would inject the alpha-gal molecules,” Patel explained. “When something comes through your skin, the body assumes it’s a parasite and is designed to have a full allergic response.”
According to Patel, allergic reactions don’t necessarily happen immediately. It’s not uncommon for one to occur four to six hours after exposure. Patel co-authored a medical journal article in 2020 called “Doc, Will I Ever Eat Steak Again?”: Diagnosis and Management of Alpha-gal Syndrome”, which provides more information on the subject.
Patel said that the alpha-gal molecule seems to exist in the saliva of adult and nymphal stage ticks sometimes referred to as seed ticks or “chiggers.”
Over the years, Conway has experienced her fair share of tick bites as the rear of her property backs up to the woods. She’s tested positive for Lyme’s disease twice but couldn’t help but notice that something seemed unusual with her latest bite.
“A couple of weeks after it happened, I was at my primary for something else,” shared Conway. “I pointed out that I had this strange tick bite in the center of my back. It seemed really weird because it bit me there when ticks usually look for someplace to hide.”
Conway also noted that the bitten area remained reactive, evident through itchiness and swelling. When the doctor asked Conway if it was peeling, she confirmed it was. Conway would later learn that her unusual symptoms were most likely caused by a lone star tick bite, as opposed to a deer tick, which is more commonly found in the area.
As an Integrative Nutrition Counselor for the last thirteen years, Conway consistently reviews medical literature and is familiar with alpha-gal syndrome. She still didn’t think much of anything after she got violently ill after eating beef the first time.
“I was going through a stressful situation and thought maybe it was just stress,” Conway said. “But then it happened again, and again, and again.”
Conway pointed out that the reaction didn’t happen every time, which she assumes is because she was building histamines in her body. And she’s also discovered that one of the unique qualities of alpha-gal is that you can eat beef nine times and not wind up in the Intensive Care Unit until the tenth time.
Things finally came to a head when she went out to dinner with her parents at a steakhouse. She ordered a filet mignon with a loaded baked potato that had bacon and sour cream. Conway became so sick that she couldn’t leave the restaurant for almost a half hour.
“My dad actually came back to look for me,” Conway shared. “When we got home, I was still doubled over in pain. The next day, I was covered with hives on my arms and my face and was itching all over.”
A long-time sufferer of an anaphylactic allergy to the herb rosemary, Conway sensed she was having an extreme reaction. Her tongue swelled up, and she quickly took some Benadryl and called her doctor. She was referred to an allergist.
It took some time to get a physician to order the blood test to confirm Conway’s suspicions that she was suffering from alpha-gal. An allergist told her to avoid meat products for a couple of weeks before he would do skin scratch tests. After 64 little pricks, Conway was shocked that she didn’t have a single reaction.
“The allergist told me that skin testing is not really accurate for food,” Conway explained. “He told me I really shouldn’t do anything subdermal because my reaction would be too severe.”
Conway left the allergist’s office with a horrible headache. As she was driving home, she started going into anaphylaxis. She said she had hives all over her face, her lips, and mouth went numb. Her tongue had begun to swell and when she got home, she literally drank Benadryl from the bottle.
Although the reaction lasted for hours, the Benadryl helped it subside. The next day, Conway followed the allergist’s instructions and went for the blood test to determine if she had alpha-gal.
Kim Conway developed a meat allergy after a tick bite injected her with the alpha-gal sugar molecule. (Photo by Stephanie Faughnan)
“All the other testing was for the protein in beef, lamb and dairy,” said Conway. “Alpha-gal is a carbohydrate and that’s why it wasn’t showing up.”
Since her diagnosis, she has been extremely cautious and has learned about cross-contamination. She said she wound up in the emergency room after she ordered soup at a diner. She sensed someone may have used the same ladle to serve her that was used to give another customer beef barley soup.
“I immediately took Benadryl and was up all night sick,” Conway shared. “I started having really bad chest tightness and difficulty breathing. I finally took the epinephrine, and my friend took me the ER because my husband had already left for work.”
Conway said she was hyperventilating and shaking from the epinephrine. The trip to the hospital helped calm her system down as doctors ordered an assortment of medications to counteract the reaction.
Meanwhile, Conway experienced another allergic reaction when she put blue cheese dressing on her salad. She has also changed her regular regime of supplements to exclude anything encapsulated in bovine or porcine gelatin.
“As a caveat, I must say that not everyone who has alpha-gal practices not eating dairy because they say they aren’t reactive,” she said. “But for me, I was definitely reactive. Since that day with the dressing, I haven’t eaten it again. I had a horrible reaction.”
The diagnosis has brought about numerous changes in her life. During outdoor barbecues at home, her husband grills her meals on a separate smaller grill. Conway ensures she carries her own food to parties and takes precautions in advance for significant events like showers or weddings.
She has learned a lot from online support groups and sees many as offering good advice. However, the amount of misinformation also startles her, and she tries to do her best to encourage people to find alternatives to things that represent potential allergens.
“I’m actually converting my business right now,” said Conway. “I want to convert it to help people manage their alpha-gal through food and supplementations. If they have medication questions, I’ll obviously steer them to their doctors. I’ve worked with autoimmune clients for years, and that’s what I’ve always done.”
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