Ticked: Nisswa woman learns to live with rare allergy
Brainerd lakes area residents like Diane Van Eeckhout of Nisswa are well aware of the dangers tick bites can bring.
But Van Eeckhout's post-bite symptoms persisted for months before she finally found out what was ailing her: an allergy to alpha-gal, a carbohydrate found in red meat and traditionally linked to a bite from the lone star tick.
Dr. Minto Porter, allergist at Essentia Health - St. Joseph's Medical Center, said in the five years she's been practicing in Brainerd, she's diagnosed about 10-12 patients with alpha-gal allergy. Most of these patients are local, though some are from the Bemidji, Duluth and Grand Rapids areas. She first diagnosed it in Michigan about seven years ago, where it was much less frequent than in Minnesota.
Typically, alpha-gal allergies are clustered in areas where the lone star tick resides, Porter said. However, allergies have started showing up in areas where the tick hasn't established a significant population, like Minnesota.
"At this point, it has not been found to be correlated with the local deer ticks that carry Lyme disease," Porter said.
National experts on alpha-gal allergy are working with allergists in Minnesota, including Porter, to determine the actual rate of alpha-gal allergy in Minnesota.
Van Eeckhout was first bitten in 2015 when she was pregnant with her daughter Rachel. There's not much to do for a tick bite when pregnant, she said, so they watched her symptoms and waited. Her symptoms were fine, Rachel was born and life went on.
Van Eeckhout was bitten twice again this past summer and started developing symptoms like tiredness, aches and pains. Her symptoms were vague and doctors weren't sure what was wrong, so she initially was diagnosed with fibromyalgia.
"In my gut, I just didn't think that was it," Van Eeckhout said.
Because fibromyalgia is an autoimmune disease, Van Eeckhout decided to cut out gluten from her diet. Another doctor suggested a low-carbohydrate diet, so she ended up eating mostly meat, cheese and vegetables, which made her sicker. She continued seeing a variety of doctors who prescribed a range of solutions, none of which seemed to work.
"I just kept thinking, 'This can't be right,'" Van Eeckhout said.
Van Eeckhout started getting more allergic reactions, starting with a rash behind her ear. She suspected dairy was the culprit, so she cut it out of her diet, which didn't work. Around this time, her husband Greg Van Eeckhout was driving to work and heard a story on Minnesota Public Radio about the lone star tick, which can trigger the alpha-gal allergy.
"He heard the report and he said, 'Wow, that really sounds like something you have,'" Van Eeckhout said.
In the meantime, her allergy medications weren't working, so her physician's assistant in Crosslake agreed to test her for alpha-gal allergy, even though she hadn't heard of it. The blood test was sent to the lab at the Mayo Clinic in Rochester and came back positive for the rare allergy. Her first appointment for treatment at the Mayo Clinic is in March.
"I have Rachel and my husband and we have a wonderful life," Van Eeckhout said. "And I just want to feel good in it."
The history behind the alpha-gal allergy is unusual, Porter said. It was initially discovered in patients who were having allergic reactions to a chemotherapy medication, she said. It was unusual because patients were reacting to the first infusion of a medication. People typically develop allergies by becoming allergic upon the first exposure then developing an allergic reaction after the second exposure.
People studying this phenomenon found allergies clustered in areas where the lone star tick lives, Porter said. Researchers also found patients were experiencing delayed reactions following red meat ingestion, she said.
"Subsequent studies allowed them to identify common link between the three exposures," Porter said.
Alpha-gal allergy is different from typical food allergies because of the delayed allergic reaction associated with it, Porter said. Instead of the instant reaction caused by most food allergies, alpha-gal allergic reactions are delayed, as symptoms don't show up until two to six hours after ingestion, she said. In addition, alpha-gal reactions don't happen with every exposure to red meat, she said.
"Some studies have suggested that the less a meat is processed or cooked, the higher the likelihood of reaction," Porter said.
Symptoms run the gamut from gastrointestinal issues to rashes to anaphylactic shock, Van Eeckhout said.
"So you don't want to really mess with that," Van Eeckhout said.
Most studies consistently report ingesting mammalian meat like beef, lamb and pork causes alpha-gal allergic reactions, Porter said. Some case reports indicate cow's milk and gelatin ingestion can also cause reactions, but those results are not consistent, she said.
There's not a lot of long-term studies on people who have lived with alpha-gal allergy for multiple years, Porter said, due to the fact the allergy was only identified about 25 years ago.
Like with all food allergies, the only treatment for alpha-gal allergy is avoidance of what causes the allergy, Porter said.
With Lyme disease, there's acute symptoms and an infection that can be treated with antibiotics, Porter said. Alpha-gal allergy is different in that it's not an infection, she said, and can't be treated with antibiotics.
Now, Van Eeckhout needs to avoid consuming or using meat products in order to avoid an allergic reaction.
"It's unbelieveable how many products have animal products in them," Van Eeckhout said.
The best way Van Eeckhout found to avoid animal products is to buy vegan products, including soaps, shampoos, conditioners and makeup. Her husband has offered to buy her emu burgers, she said, so she can have a burger from time to time. He also loves goose and duck hunting, so she can still enjoy the results of those hunts with him.
"He's teasing that he's the only husband in the world that has to actually go fishing so I can eat," Van Eeckhout said.
Other people in Minnesota might be suffering from reactions caused by an alpha-gal allergy and don't know what's causing them, Van Eeckhout said, because the allergy is still rare. If someone is bitten by a tick and starts experiencing similar symptoms, it might be worth it to test for an alpha-gal allergy, she said.
"If the doctors and pharmacists haven't heard of it, they're not going to look for it," Van Eeckhout said.
People may think they have an alpha-gal allergy but don't, Van Eeckhout said. But there's no harm in testing for it and ruling it out, she said.
The ground may still be covered with snow and ice, but spring will come soon and with it, the return of ticks. Many people know of the dangers posed by Lyme disease, but many people are unaware of the dangers of an alpha-gal allergy, Van Eeckhout said. People should be diligent when checking for ticks after they've been out in wooded areas and know the signs and symptoms associated with tick bites.
"Using the sprays and tucking your pant legs in," Van Eeckhout said. "Things that don't make you look very cool but can protect you."