1. The list of Alpha-Gal Syndrome symptoms seems to be getting longer, and some symptoms can mimic those of Irritable Bowel Syndrome (IBS).7
Symptoms of Alpha-Gal syndrome can run the gamut from an itchy rash and hives to diarrhea and anaphylaxis.6 In fact, anaphylaxis occurs in up to 60 percent of people with the syndrome.8 However, according to survey results presented at the American Academy of Allergy, Asthma & Immunology Annual Meeting, some Alpha-Gal Syndrome patients have a wide range of seemingly new symptoms, such as those involving the cardiovascular, emotional, nervous, and motor systems. In particular, patients in the survey reported a wide range of mental health issues, such as anxiety, depression, fatigue, poor memory, irritability, sleep disturbances, etc.9
Additionally, alpha-Gal symptoms may closely resemble those of IBS. According to a 2021 study in the Journal of Gastroenterology, some people with Alpha-Gal Syndrome only have gastrointestinal symptoms, such as abdominal pain, nausea, and diarrhea. Many of these symptoms overlap with IBS, and 56 percent of patients in this study met the criteria for diarrhea-predominant IBS.7
Based on this study and the fact that some healthcare providers aren’t familiar with Alpha-Gal Syndrome, it stands to reason that symptoms of alpha-Gal Syndrome can be confused with those of IBS.7 Translation: Your tummy troubles could be caused by a tick-related ailment rather than IBS.
One way to know for sure is to ask your healthcare provider for a specific IgE blood test or more specifically, a component blood test. (More on that later.) Together with your medical history and a physical exam, blood testing can help your provider home in on a diagnosis.
2. For the majority of patients in one study, it took seven years to obtain an Alpha-Gal Syndrome diagnosis.10
While info on Alpha-Gal Syndrome is offered by many medical-information sources, such as the Centers for Disease Control and Prevention (CDC) and the Asia Pacific Association of Allergy, Asthma and Clinical Immunology, the condition is still relatively unknown.1,5,10 Not surprisingly, then, one study revealed that almost 80 percent of its patient participants struggled to find a diagnosis for more than seven years.10 (That’s 2,555 days of suffering, and there’s nothing fun or funky about that.)
What’s more, medical literature reveals that in trying to determine the cause of their ailments, some patients underwent exploratory surgery, removal of their gallbladder or appendix, and partial removal of the pancreas before they finally received an Alpha-Gal Syndrome diagnosis.6 And according to a 2017 paper, patients are more likely to discover alpha-Gal online, on the radio, or through personal connections than by visiting the emergency room due to anaphylaxis.10
These stats are particularly troubling because a simple blood test along with a medical history and physical exam can help a healthcare provider diagnose Alpha-Gal Syndrome. In fact, a single visit with your healthcare provider and a blood draw could help save you not only a boatload of time and money otherwise spent on specialists and unnecessary tests but also a mountain of misery.
3. Skin-prick tests (SPTs) aren’t effective for alpha-Gal, and blood testing is paramount.11
Given the time and money that can be involved in securing a diagnosis, testing for Alpha-Gal Syndrome is critical. There is no explicit Alpha-Gal Syndrome treatment, so it’s vital to receive a proper diagnosis to know what products and foods to avoid. However, you need to get the right test straight out of the gate, and a skin-prick test (SPT) probably isn’t the way to go. In fact, SPTs with extracts of pork or beef have been unreliable in detecting alpha-Gal.11
Rather, ask your healthcare provider for a blood test. But instead of a whole allergen blood test, which helps providers rule allergies in or out, a component test for alpha-Gal will help to pinpoint the specific sugar molecule that is causing symptoms. Plus, component testing can sometimes offer providers insight into the severity of an individual’s reactions.
Component testing also may help your healthcare provider distinguish between patients with Pork-Cat Syndrome versus those with Alpha-Gal Syndrome. (No, we didn’t make that up. Read more about Pork-Cat Syndrome in No. 9.)
That said, it may not be enough just to ask for an alpha-Gal test. You need to be very specific to ensure you get the right one. You want an alpha-Gal specific IgE component test. (Additionally, your provider may want to test for beef, pork, lamb, alpha-Gal, total IgE, and tryptase to help develop a clear diagnosis.) And just because a test has alpha-Gal in the name doesn’t mean it’s the right one. The following tests are NOT recommended for specific IgE testing for alpha-Gal: alpha-Galactosidase nor α-Galactosidase A deficiency, both of which are often used to help diagnose Fabry disease (a rare disorder involving fat metabolism).12
4. Across the globe, bites from several types of ticks (and potentially chiggers) can lead to Alpha-Gal Syndrome.3,4,6
Initially, this syndrome was linked to the Lone Star Tick, which is found mostly in the southeastern United States.2 However, Alpha-Gal Syndrome has now been reported on all continents except Antarctica, and at least eight tick species are confirmed or suspected culprits associated with the condition.5
Additionally, at least some tick species have extended beyond their typical home turf. That is, as hosts such as deer move into different territories, so do ticks that hitch a ride on them. So thanks to different patterns of land use, climate change, and increasing deer populations, ticks like the Lone Star Tick have spread. For example, the Lone Star Tick was previously rare in Michigan, but it’s now the third most common tick in the state.4 Plus, a 2022 article in the Toronto Star revealed that the tick is expanding into Canada due to rising temperatures.13
Also note that many tick bites go unnoticed, particularly from “seed” ticks. Although these baby ticks are the size of a poppyseed, they can still transmit alpha-Gal.4 Recent reports also suggest that bites from chiggers, which are microscopic arachnids (like spiders) that can be found worldwide, may also lead to Alpha-Gal Syndrome.3,6,14
And if you want to hear something really weird, consider this: New research has identified cross-reactivity between tick proteins and wasp venom. That means that some people with Alpha-Gal Syndrome may be sensitized to wasp venom.15 Granted, wasp-allergy symptoms may be different than those related to alpha-Gal. But this fact illustrates that some bizarre and currently undiscovered connections may exist between ticks and insects.