It might be hard to imagine being excited about the prospect of eating rice and potatoes again, but that is exactly where Kristie Downen is in her life right now.
After being diagnosed with alpha-gal syndrome about a year ago, the Peace Valley resident’s diet has been restricted to blueberries, blackberries, raspberries, peas, salmon, sunflower seeds and plain coffee with sugar — made with well water and using instant coffee instead of brewed to avoid possible allergens in coffee filters.
Anything Kristie eats has to be carefully rinsed to avoid any contaminants, and her husband Darion has to make sure he has no contaminants on his clothing before he touches her. Earlier this month, dust from cattle feed on his clothing caused her to have an allergic reaction.
Those reactions can cause life-threatening medical emergencies, and though she tries to limit her exposure, Kristie carries Epi-pens everywhere she goes, plus medical instructions in case there she does suffer anaphylactic shock, which can cause her airways to close.
Alpha-gal syndrome also severely limits the types of medications she can take, and she also has to be careful of exposure to chemicals and fragrances in soaps, beauty products and the material her clothing is made of.
Certain scents can cause headaches that last for days. Instead of soap, she uses a mixture of baking soda and store-bought honey, filtered and pasteurized, for bathing.
Using anything containing animal products like wool, or animal byproducts like gelatin — sometimes ingredients in medications — is out of the question. She can’t have a flu shot or many other vaccinations because they contain egg protein. She wears a surgical mask when she goes out in public, which isn’t often, to protect herself from an illness she can’t take medicine for.
“When I’m out, I’m not wearing a mask to keep from infecting other people, but to keep them from infecting me,” she explains.
Alpha-gal syndrome is a reaction to exposure by some people to the alpha-gal sugar molecule, injected by a carrier tick into a person’s bloodstream during a bite.
In America, the Lone Star tick is the culprit. It becomes a carrier by ingesting the alpha-gal molecule while feeding on mammals that are also carriers, usually cows or sheep, according to the Mayo Clinic.
Not everyone develops an allergic reaction, but Kristie contracted the condition and her symptoms went undiagnosed for five years. She had a tooth infection at the time and her immune system was already compromised when she was bitten, she says.
That led to allergies beyond meat; during that time her body had an allergic reaction to almost everything she ate or was exposed to and those irritants were recognized as allergens from that time forward, she explains.
“Each person reacts differently,” she emphasizes. “Symptoms can be so different for different people.”
Her case is particularly severe. During that time she suffered from vomiting, sometimes about 17 times a day. She also experienced diarrhea, hives, rashes, lingering headaches and difficulty concentrating.
The reactions also caused her body to retain fluid and swell, in one instance so badly arteries to her right arm were compressed, cutting off circulation. Not knowing what was causing the swelling, called lymphedema, she had her first rib removed on that side to relieve the pressure, one of many surgeries she had during those years that could have been avoided had she been diagnosed correctly, she says.
Kristie took the rib home in a jar.
She finally got a diagnosis last February at Mercy Clinic in Willow Springs, after a test recommended by nurse practitioner Erica Marriott. The test specifically identifies alpha-gal levels, unlike a tick panel that can identify tick-borne illnesses but not the syndrome.
And while knowing what was causing her symptoms was a relief, it also turned her world upside down. With most foods eliminated from her diet, her weight, around 195 pounds only eight months ago, has dropped to as low as 102 pounds.
Some of that lost weight was fluid retention from the syndrome, but the loss of the rest has been a result of struggling to eat enough to keep weight on. Many social gatherings and family functions where food was served became off limits, and she had to get rid of her rabbits for fear of a reaction.
She and her husband still have a few dogs and a goat.
“Well, the goat actually belongs to one of the dogs,” she laughs. “So we have a dog that has a pet goat.” The dogs are bathed often and they spent about $300 last tick season on insecticides and treatments for the dogs.
The couple have spent the last few years walking on eggshells, but they have taken that walk together. Darion, for the most part, adheres to the same diet as Kristie. He admits to having a bit of tuna or a piece of chocolate, but rarely.
The foods he eats can be a danger to Kristie, because allergens can be present in his sweat and other body fluids.
“The lifestyle is so depressing. I have to put it into the mindset that I don’t care about food,” he confesses.
Kristie adds she used to cook a lot, and she misses that. She is still scared to eat even the foods she is allowed to, because of the danger of a life-threatening reaction.
Some foods she tried that were on a “safe” list, like poultry, turned out not to be.
She finds comfort and true understanding from other sufferers in online support groups, and is working on starting a support group of her own, and Darion is there to cheer her on.
“She has a foggy brain, but is still very brilliant,” he observes.
And though her situation seems dire now, her doctors and nurses have told her if she can avoid reinfection for the next few years, she should be able to start reintroducing foods and exposure to other possible allergens without the high risk she is experiencing now.
She wants, above all, for the public to be aware of her condition and, if they suspect the illness, to specifically ask for the alpha-gal test along with a tick panel.
“The more we share what we know, and how people can get tested, the more people we can help,” she asserts
Prevention is key.
“Use tick spray” is the biggest bit of advice she wants everyone to take, especially in the Ozarks, where ticks are widespread.
She also wants everyone to know, despite her struggle, her motto remains, “Always have a great day and pass on a smile.”