By Charles Romans
Carter County Times
It is difficult to protect ourselves at all times, and more difficult to protect ourselves from the little-known dangers we might encounter simply going about our daily lives. One of these dangers that most know little to nothing about, and therefore are unable to take reasonable precautions against, is alpha-gal syndrome.
Alpha-gal syndrome is spread by the bite of ticks, most usually the Lone Start tick. When it bites, the tick injects saliva containing alpha-gal into the body, which triggers an immune response. This creates a hypersensitivity reaction to a sugar molecule called alpha-galactose. Alpha-galactose is found in the tissues of most mammals, but is not found in primates or humans. The infected human may not even notice the reaction until they consume meat such as beef, pork, lamb, or gelatin.
Once these products are consumed the symptoms usually manifest within 2 – 6 hours. Each individual has a different reaction, but typical symptoms are hives, swelling of the lips or tongue, nausea, vomiting, and diarrhea. In severe cases anaphylaxis, a life-threatening allergic reaction, can occur. The syndrome is difficult to diagnose, and therefore often goes undiagnosed, because it requires a blood test that detects antibodies to alpha-gal. And though avoiding meat and meat byproducts might be effective for some in managing it, currently there is no cure for alpha-gal syndrome.
Amanda Litteral currently lives in Lexington, but she is originally from Leatherwood near the border between Greenup and Carter Counties. Litteral was forced to learn the hard way about alpha-gal syndrome because two different members of her family contracted it. Her first brush was when her daughter Harmony Litteral was (unknowingly) bitten by a Lone Star Tick while showing animals at the Greenup County Fair.
“In 2017 my daughter was cleaning out goat stalls at the Greenup County Fair,” Litteral said. “They were showing goats at the time, and she had gotten into a nest of ticks.”
She took her daughter to urgent care immediately and got the ticks removed, but unknown to her the damage had already been done. Urgent care gave her the standard antibiotics and told Litteral her daughter would be fine. But in November of the same year, Harmony Litteral had her first anaphylactic reaction.
“In the middle of the night her lips started swelling, her tongue started swelling, so we drove her from Route 7 to King’s Daughters Hospital. They said she just had an allergic reaction and sent her to an allergist in Morehead. The allergist tested her, and she tested negative to nearly everything,” Litteral said.
Ultimately the allergist said Harmony had Celiac Disease, because of her reaction to bread and cereal.
The allergist was on the right track, though not in the way he assumed. Litteral later found out that a lot of breads and cereals are vitamin fortified with lamb, a trigger for alpha-gal. But Litteral did not know this at the time, so her daughter went on a gluten free diet until 2020.
“In 2020 she was at the house eating bacon,” Litteral said. “She immediately began swelling. Her throat and tongue swelled, and she began itching all over.”
Litteral took her daughter to the doctor who tested her for beef, lamb, and pork allergies, and she immediately reacted. She had become so allergic in fact that the reaction manifested itself even when those meats were being cooked anywhere near her. Ultimately Litteral’s daughter was sent to a hospital in Cincinnati, Ohio, because Litteral herself had been reading about alpha-gal and thought it might be what was tormenting her daughter.
The doctor in Cincinnati administered the test but admitted not knowing much about it. He had only encountered one other patient with alpha-gal syndrome. While there her daughter saw several specialists including another allergist, but there was not much knowledge of the syndrome. Determined, Litteral dove into research, looking for any information that might help ease her child’s suffering.
“I searched websites and Facebook groups and started to find other people in other states that had it,” Litteral said.
This research yielded a connection with a lady in Mississippi who was an advocate for people suffering from the syndrome. This led to a connection with a doctor from the UNC School of Medicine, Scott Palmer Commins. Doctor Commins is currently the lead researcher of alpha-gal.
It took seven months for Litteral to arrange an appointment with Dr. Commins, but when she was finally able to see him, she brought records of every single prior doctor visit. Commins poured over these and conducted his own examination. Commins, in addition to alpha-gal, also diagnosed Harmony with another condition which exacerbated her condition even further. He determined that Harmony also suffered from Ehlers-Danlos syndrome (EDS), an inherited disorder that affects the body’s connective tissues; tissues that provide support and structure for skin, bones, joints, blood vessels, and other organs.
Unfortunately, on top of everything else she had endured, Harmony was also diagnosed by Commins with mast cell activation syndrome (MCAS). MCAS causes mast cells to release too many of what is known as chemical mediators, which cause an allergic reaction throughout the body even when an allergen isn’t present. To treat her, Dr. Commins put her on a mast cell stabilizer, and instructed her on what foods (especially red meat) to avoid.
“After two years on mast stabilizers her reactions went from one every week that put her in the hospital to maybe one every three months. She was completely vegan, and we were avoiding everything that caused a reaction. Now we are at the point where it’s like she is in remission, and it’s almost gone. But I had to do my ‘crazy mom’ research to get us to that point,” Litteral said.
Litteral endured a less than sympathetic medical community to help her daughter. She said she has been accused of ‘making it up’ and told that the condition ‘wasn’t real,’ but she did not let those things stop her. Ironically, however, since she had made so many trips to UK Hospital (in fact, she eventually moved to Lexington) the hospital eventually brought residents to her to educate them about the syndrome.
During this time, sadly, Litteral’s father was also diagnosed with cancer. Before one treatment he told her that he had been bitten by a tick and showed her the spot on his leg that wasn’t healing. She recommended that he be tested for alpha-gal because she feared it would affect his treatment. Her father did test positive for the syndrome, and only took two treatments for his cancer because each treatment caused anaphylaxis. Unable to be treated, after an extended stay in the hospital he decided to return home, and passed away two weeks later.
Today Litteral does everything within her power to raise awareness of alpha-gal syndrome and potential treatments. She encourages anyone who is suffering from it, or has a family member that is, to reach out to her on Facebook.
Contact the writer at charles@cartercountytimes.com
