Carthage native Robert Downey, 65, would kill for a ribeye steak. Neosho High School Senior Kelsey Allen, 17, loves brisket. But neither Downey nor Allen dares touch the foods they love anymore because of a tick bite.
And yes they miss it.
“You don't think about it until you can't have a taco or a cheeseburger, you think oh man, I'd kill for just a ribeye steak,” Downey, Joplin, said. “It makes a tremendous difference.”
“Beef is a very hard thing to give up, especially when you lived off it your entire life,” Allen added. “No more steak, no more brisket, no more barbecue.”
Allen and Downey are two of a growing number of people in Southwest Missouri who have been diagnosed with the alpha-gal allergy, a food allergy only discovered less than a decade ago.
Dr. Hilton McDonald, an ear, nose and throat specialist at Mercy Joplin Hospital, said the allergy is caused by a tick bite, specifically the Lone-Star tick which has a distinctive white spot on its back, and he's diagnosing, on average, two patients a month with it.
“Lyme Disease and Rocky Mountain Spotted Fever are the most common diseases from ticks, but ticks are a carrier for lots of stuff,” McDonald said. “They're parasites and they suck on one animal and they go and transfer things to another.”
In the case of the Alpha-Gal allergy, a tick bites a deer or cow or other kind of mammal, takes in the carbohydrate known as galactose-alpha-1,3-galactose, or alpha-gal for short) and then bites a human.
“It is a carbohydrate that mammals have, but not humans,” McDonald said. “When the tick bites a deer and gets that, then bites a human, it injects that into the human and creates anti-bodies in the human's body. When we eat a mammal, the anti-bodies are in there so our body will fight against it, it creates a histamine release, and that histamine release can be severe. It can cause the allergic reaction whether it's swelling or rash, or hives. The swelling can be your tongue, your lips, your upper airway.”
A person with the alpha-gal allergy is allergic to all mammalian meat or products, including beef, pork, venison, bison meat, milk, and products with meat or dairy byproducts in them.
The result a delayed reaction — the person doesn't start to show symptoms of the allergy for weeks or months after the tick bite, and then when symptoms do start appearing, the hives or swelling might not start for up to 12 hours after the person has eaten the food he or she is allergic to.
McDonald said this is why diagnosing it is so difficult and why it was only discovered less than a decade ago.
“The allergic reaction can be several hours later after you've eaten the meat,” McDonald said.
Also, the tick bite can be six months ago and then it starts showing up. It doesn't have to be, I got a tick bite yesterday, I'm allergic today. If it was a more direct relationship, it would be easier to diagnose back in the old days.”
And the reaction can be severe, even fatal in in a few cases.
Kelsey Allen, the Neosho High School senior, was sick for more than four years before she was diagnosed with the alpha-gal allergy last year.
Allen lives on a farm in northern Newton County with her parents and younger brother and sister.
She loves camping and being outdoors, she's a member of the FFA, so ticks are just a part of life.
She also lives in a family of hunters, so red meat, mammalian meat, was central to her diet.
“We lived off of beef and pork, we raised our own pigs, we raised our own cattle,” Kelsey said.
“My dad went hunting every single fall and we'd live off venison as well.”
When she was 11 or 12, Kelsey started getting sick. It started out as hives, then she'd have nausea and stomach cramps, but these symptoms didn't show up until hours after she ate, so no one could make the connection to any specific thing she was eating.
“My doctor did think it was diet related,” she said. “He had me going gluten free and dairy free, which of course going dairy free helped a little bit because dairy is one of the things I'm allergic too. But beef was not something he thought would be a problem for me.”
Kelsey's doctor sent her to specialists in Springfield and Kansas City. She went to Children's Mercy Hospital in Kansas City where she underwent a colonoscopy, a procedure not normally performed on teenagers, but nothing obvious was found.
Kelsey's mom, Julie Allen, said well-meaning friends and acquaintances had their suggestions, but they weren't helpful.
“She was sick for a long time and no one could figure out what was wrong,” her mom, Julie Allen, said. “I don't know how many people asked are you sure it's not an eating disorder. We knew it wasn't an eating disorder, but people kept second guessing us, it's got to be an eating disorder, no it's not. That was frustrating.”
After two trips to the emergency room, including one trip when she was going into anaphylactic shock, which is potentially fatal, her pediatrician sent her back to Children's Mercy to see an allergy specialist, Dr. Jay Portnoy.
I walked in there and within five minutes of telling him what was wrong, he knew exactly that I had this brand new allergy they had just discovered, called alpha-gal,” Kelsey said. “He confirmed that with blood work and I knew two weeks later that this is what I had.”
The diagnosis meant a complete lifestyle change for Kelsey and her family.
“We do not raise beef anymore. We've changed everything,” her dad, Brian Allen, said. “We can't go eat wherever we want to and when we cook stuff at home, we can eat stuff that she can't have, but we choose not to because we want to be fair to her. We don't want to eat a t-bone steak in front of her if she's eating fish. The lifestyle change for us is basically, our diet is her diet. That's very hard.”
But the results have been dramatic.
“Oh my goodness, it is incredible,” she said. “I'm not getting sick after every meal, I actually have energy so I can go out and do things I love to do, going outside. Two years ago whenever my family went camping, basically all I did was sit around in a chair, I didn't have the energy to do anything. Now I'm really excited for this camping trip, I'll be able to play around with all my cousins and go kayaking with my family and I'll be able to do things I love to do.”
Fateful fishing trip
Robert Downey knows exactly when he got the tick bite that changed his life.
“It was April 25,2016, I had gone over to fish in the strip pits in Southeast Kansas with a friend, so I knew the exact day,” Downey said. “I started having frequent hives, would take over-the-counter medications, benadryl or Zyrtec seemed to kind of take care of it, but it was becoming more frequent.”
Downey suffered for about four months and made two trips to the emergency room, the second of which happened when he too was going into anaphylactic shock.
Downey said he thought he was going to die on his second trip to the ER, but after two days in intensive care and two more in the hospital he was released.
Downey saw Dr. McDonald who did the blood test that resulted in the alpha-gal diagnosis.
The lifestyle change has been tough on McDonald, who says he's the “original meat and potatoes kind of guy.”
“I've lived my life by a simple motto, never trust green food,” He said. “I ate three kinds of vegetables, mashed potatoes, baked potatoes and fried potatoes. They explained to me that this was a reaction to any type of mammal meat, so since August, I've had nothing but chicken, turkey and fish, and let me tell you, it gets really boring.”