Alpha-gal syndrome is a life changing tickborne malady that can be life threatening. Commonly known as an allergy to red meat, the alpha gal sugar molecule is in meat from mammals, dairy products, and certain medications and medical products.
It also can be in laundry detergent, cosmetics, sugar and home water filters that use bone char as filtering agents. Those are just a few examples of the sources where the alpha-gal molecule is found.
While primarily the lone star tick is the culprit, findings suggest that other ticks also can carry the galactose alpha-1,3-galactose molecule, an oligosaccharide in the cells of all nonprimate animals. A tick injects alpha-gal into the human bloodstream and the immune system recognizes a foreign invader and produces specific antibodies. Humans then develop IgE antibodies after consuming meat or dairy leading to the histamine reaction.
Symptoms can include joint pain, abdominal pain, diarrhea, or vomiting; swelling of lips, eyelids, throat, tongue, and face; itching, hives, and flushing; cough, shortness of breath or wheezing; reactivity of fumes from cooking mammal-based products; brain fog, anxiety, and cognitive issues, dizziness or fainting; and tachycardia. Symptoms vary from person to person and severe symptoms can lead to anaphylactic shock; thus alpha-gal patients are encouraged to carry an EpiPen.
Depending on the information source, 20-40% of patients have gastrointestinal symptoms alone. Humans cannot synthesize the molecule and therefore produce high levels of IgE antibodies when exposed.
Diagnosis can be challenging as many times symptoms do not manifest until two to eight hours after the occurrence, unlike the more immediate reaction in other food allergies.
Alpha-gal syndrome was first identified in 2009, but many clinicians are not aware of it. A nationwide survey of 1,500 healthcare professionals by the U.S. Centers for Disease Control and Prevention showed that 42% were unaware of the condition, and 35% lacked confidence in diagnosing or treating patients with alpha-gal syndrome.
Diagnosis is further complicated by the fact that alpha-gal is not a part of the traditional tickborne disease testing panel. It is a separate blood test that, along with symptoms, confirms alpha-gal syndrome. Some sufferers are tested through allergy testing and some self-diagnosis predicated on their symptoms, and many are misdiagnosed with gastrointestinal issues.
While alpha-gal reporting is mandatory in Arkansas, the requirements for information on each patient are cumbersome. Cases must be confirmed not simply by reporting a number, but also with supporting clinical notes on each patient. Most cases are defined by the state as “suspected.”
Right now, the Arkansas Department of Health shows fewer than ten official cases in Carroll County, year to date. In 2023, 304 Arkansas cases were reported and 70 confirmed. In 2024, 2614 were reported and 330 confirmed. Zoonotics personnel in the department say thousands of cases are being reported.
Health First Nurse Practitioner Jennie Spears, FNP, had only heard of alpha- gal when she moved here in 2017. Eventually she had one patient. Now she says she has at least 15.
Treatments
There is no known cure for alpha-gal syndrome but there are treatments showing success for remission in some patients. Not getting further tick bites is a critical starting point as additional bites can exacerbate the IgE response. Avoidance of mammal and mammal-based ingredients is paramount. An elimination diet of mammal and dairy can help alleviate symptoms. Some sufferers have no problems with dairy products; others have adverse reactions.
Some patients have spontaneous remission after a prolonged period. Two protocols currently being used by locals include the Soliman Auricular Allergy Treatment (SAAT) and electroneedling.
Whitney Dwyer of Sprouting Wellness in Fayetteville, is an SAATpractitioner. “I’ve been practicing acupuncture and Traditional Chinese Medicine for ten years and providing the SAAT protocol for the last four,” she said. “The SAAT is a revolutionary, biophysical allergy treatment developed by Dr. Nader Soliman. This innovative, one-time treatment protocol uses one very tiny (3mm) needle on the ear to provide long-term remission of allergy symptoms. Research is showing that SAAT provides the highest success rate of any other allergy treatment, and I’ve seen this to be true in my practice, as well. While best known for helping with alpha-gal, the SAAT protocol is useful for any allergies.” The needle for SAAT treatment stays in place for three to four weeks.
Electroneedling acupuncture is offered by Ginger Spencer at Relax Renew Medical Massage in Tulsa. Eureka Springs resident Gary Maybury got a tick bite in November 2024. His symptoms, exclusively gastrointestinal, began shortly thereafter.
Like many alpha-gal sufferers, he had symptoms for months, saw a variety of practitioners, and underwent testing and procedures. In September of this year, he experienced electroneedling. The process is a bit different than the SAAT treatment in that needles are out the same day, and patients must reintroduce grass-fed meat or whole milk or cheese and whole grain bread within 24 hours.
“I had electroacupuncture,” Gary said. “Four needles were inserted, two in each ear, one in the elbow, and one in forearm. Electricity was pulsed every second for one hour. The more you can handle, the more effective.”
He followed the 24-hour protocol and said, “I started with two inches of grass-fed steak that evening; the next morning I had a chunk of cheddar cheese and for lunch, I ground up steak and ate a half-pound hamburger with cheese on it.” He had no reaction.
Today, he is still in remission. Gary, his wife, Jan, and her sister, Jo Pritchard, navigated the syndrome together. Jan does not have alpha-gal but Gary and Jo do.
Jo moved to Eureka Springs from California in 2021 and shortly thereafter was bitten by a tick. She was tested through the VA system and said, “It isn’t set up for alpha-gal. This is so hard to navigate. Carrageenan is in a lot of chicken and turkey products.”
Jan wrote to Springer Farms, and it is not in their products.
“Calling manufacturers to check on ingredients becomes second nature,” Jo, a retired science researcher, said. She was in the ER twice after the paramedics could not find a pulse.
“Check out all your prescription medications,” Jan said. “Really do your research and make sure you are not getting any mammal or dairy.” Gary, Jan, and Jo are pleased with the success of the electroneedling, saying “It is like a miracle.”
When first diagnosed, eating can be compared to navigating a minefield. Along with strict mammal and dairy avoidance, eating fresh, unprocessed, low-histamine foods and avoiding leftovers that have the potential to raise histamine levels is critical. Becoming an ingredient sleuth is imperative.
Kelly McDonough believes she had alpha-gal for a couple of years, even with very limited meat consumption, and experienced “terrible stomach pain and gastrointestinal (GI) issues. Things got really bad over the holidays with eating cheese and beef. By the time I got through the holidays, I felt awful. In January, I ended up in the ER trying to get scans.”
After having multiple tests and scans and accompanying insurance challenges, she requested food allergy testing. That is when alpha-gal was discovered. “When you don’t know what’s going on, it seems like everything is making you sick. And go-tos like yogurt and cottage cheese were making it worse. I waited to eat until I was starving.”
As well as GI issues, Kelly also had rashes. Her SAAT treatment held things in check for a couple of months and now her symptoms are less severe, and she is back on a strict elimination diet though hopeful to reintroduce dairy. “The thing that is hardest is the misperception,” she said. “This is not a choice. It is a food allergy that is problematic”
Becky Gillette, who in addition to alpha-gal is lactose intolerant, was first triggered by lasagna. “I was doubled over in pain at 3 a.m.,” she said. She went to urgent care and had the traditional tick panel. Urgent care doesn’t test for alpha gal, so she went to her primary care physician.
“I was delighted to find out I had it,” Becky said. “I didn’t know what was wrong with me. I was losing weight and was fading away. Since I stopped eating meat, it took a while, maybe six weeks, but I would say things are pretty normal now. If you have ill health and you have been getting tick bites, you need to get tested.” Significant weight loss is not unusual for alpha-gal patients.
Dining out is a thing of the past for many alpha-gal patients. Cross-contamination with meat-based products can send one straight for the EpiPen and ER. Experts suggest wearing a medical alert bracelet stating “Alpha-gal Syndrome. Anaphylaxis risk. No mammal derivatives.”
Medication management is another potential minefield with many capsules being gelatin-based, or coatings containing glycerin or casein, or fillers containing magnesium stearate or lactose. Debbie’s Pharmacy in Rogers has expertise in alpha-gal and is currently helping more than 100 patients obtain safe medications.
Hope and help
The September-October issue of Discover magazine has an article on a new mRNA vaccine that could prevent a wide variety of allergies. Based on a study published in Journal of Clinical Investigation, scientists have developed a new mRNA vaccine that has the potential to eradicate allergies. It is currently being tested on mice and shows “impressive results.”
Eureka Market is working to serve the needs of alpha-gal patients as well as those with Mass Cell Activation Syndrome. “I am looking for items that will help our community as much as possible and educating myself as much as possible,” owner Sativa Trimble said. “Alpha-gal is so prevalent. It’s alarming. We want our food to nourish us; we don’t want it to poison us.”
She encourages those who are navigating these conditions to let her know if they have found things they love. Food as simple as plain sugar is processed through bovine bones, but Eureka Market’s sugar is not. There is an entire plant-based section in the store.
One of the better avenues of help is the monthly Alpha-Gal Syndrome Support Group that meets at the Carnegie Library on the fourth Thursday of the month at 4 p.m. in Meeting Room 1. Facilitated by librarian Carmen Rose, who self-diagnosed in 2017 and has had yearly blood tests since 2022, the exchange of information is invaluable.
Because the average time to diagnosis is seven years, alpha-gal patients are glad to know what they have and then can start the process of how to deal with the disease. Everyone is different – one cannot touch leather without a flare, another reacts to fumes from cooking meat. Two have GI symptoms only. Two have cardiac issues. Three have had to use EpiPens and two have been to the ER.
Carmen has plenty of experience with alpha-gal reactions. “Originally I had tummy aches after eating beef,” she said. “Three hours later, I broke out in hives. If pork or venison, I am more reactive. Last time the problem was cross contamination which created an anaphylactic reaction.”
She had no EpiPen with her, so she went to the pharmacy to get her prescription filled and the pharmacist told her to use it right then. “That’s a lesson I learned. When I did the EpiPen, I felt good within fifteen minutes. You have to keep yourself calm. I should have followed the advice of going to the ER.
The goal of the group is to help everyone be heard, share experiences, and help each other to deal with cross contamination, learn how to read ingredients, share practical knowledge in how to improve coping mechanisms, and help build resilience.
Alpha-gal syndrome stimulators
Beef, pork, lamb, venison, goat, rabbit, dairy, gelatin, tallow, lard, collagen, glycerin/glycerol if from animal source, magnesium stearate if from animal source, natural flavors (hidden animal possible), enzymes (rennet, pepsin, lipase if animal derived), carrageenan, and gums (gums do not have alpha-gal but bother some people and can cause gas and bloating) including xanthan gum, guar gum, gellan gum, locust bean gum, gum Arabic/acacia gum, agar-agar, polysorbate 80, mono-and diglycerides (if animal derived). The following also should be avoided as they can be triggers: arachidonic acid, arachidyl proprionate, biotin, castoreum, lanolin, latex, milk proteins (including casein, caseinate, sodium caseinate, whey), myristic acid if animal origin, oleic acid (if animal based) and stearic acid (if animal based).
Important Alpha-Gal Resources
The Ultimate Guide to Alpha-gal Syndrome by J. Dette Avalon, ANP
https://www.med.unc.edu/medicine/news/chairs-corner/podcast/alpha-gal/
Allergicliving.com (Search for Dr. Scott Commins, national renowned expert)
Pillclarity.org/post/vegan-friendly-allergy-meds (Three out of four oral medications contain animal derivatives)
Dailymed.gov (Through NIH, you can look at a code and find out active ingredients)
FIG app (Food is good) Barcode scanning/ingredient scanning
Twoalphagals.com
Alphagalsupport.com
sproutingwellnessclinic.com (SAAT treatment)
rrmmassage.com (electroacupuncture)
Tina Merritt, M.D. https://allergyasthmaclinicnwa.com/
Many Facebook groups but use caution