Alpha-Gal Syndrome: Val’s Story
Table of Contents
Tick Bite Allergy: Understanding Alpha-Gal Syndrome
Alpha-gal syndrome (AGS) is an increasingly recognized allergy triggered by a tick bite. While the exact number of cases is uncertain, the Centers for Disease control and Prevention reported over 110,000 positive antibody tests for alpha-gal in july, suggesting the true number could be closer to 500,000. Cases are on the rise, particularly in the southern and southeastern United States where the Lone Star tick, the primary transmitter of alpha-gal to humans, is prevalent. AGS symptoms often appear four to six weeks after a tick bite, though in some cases, the onset can be delayed for months. A distinguishing feature of this allergy is the delayed reaction to red meat consumption, which can take up to four to six hours, compared to the typical one-hour window for other food allergies. Alpha-gal, a sugar molecule found in mammal meat, organs, and even milk and gelatin, triggers this allergic reaction. As professor Hasan Arshad, chair in Allergy and clinical Immunology at the University of Southampton explains, “Hence, drugs and vaccines, and even sweets that have mammalian cells/tissues or even a minor quantity of gelatin can occasionally cause a reaction.” Interestingly, individuals with blood type A and O appear to be at higher risk of developing AGS, suggesting a possible link between blood type and the allergy’s development.Symptoms and Diagnosis
AGS symptoms range from mild, such as rashes and swelling, to severe, including difficulty breathing and anaphylaxis.“It’s probably more common than we think as the diagnosis is frequently enough missed, but specialists are seeing more cases,”
Delays in diagnosis can occur due to the unusual symptom timeline and lack of awareness among healthcare professionals, emphasizing the need for increased understanding and education regarding this emerging allergy.
Alpha-gal syndrome (AGS) is a relatively new and perplexing allergy that has recently emerged in the United Kingdom. This condition,triggered by tick bites,can cause a delayed allergic reaction to red meat.
Val, a traveler who unknowingly contracted AGS after a cruise, initially dismissed her symptoms as a simple heat rash. It wasn’t untill later, upon experiencing worsening reactions to even small amounts of meat, that she realized something more serious was happening.
“It was only when I got home I realised I should have mentioned AGS so I called and asked if she’d heard of it,” Val explained.
Initially, her doctor was unaware of the condition’s presence in the UK, highlighting the lack of awareness surrounding AGS. However, research confirms that while first identified in the US in 2002, AGS has since been detected in numerous countries, including the UK.
Dr. Whyte, an expert on the condition, clarifies that “While Lone Star ticks are mostly responsible for AGS in North and Central America, other species can be involved in other parts of the world.”
Val’s journey towards diagnosis involved persistent efforts. After experiencing increasingly severe skin reactions to pork, sausages, and bacon, she insisted on seeing an allergy specialist in 2018. A blood test revealed a Grade 4 AGS diagnosis, indicating a strong positive reaction.
“That explained why I reacted so badly every time,” Val shared.
following her diagnosis, Val was referred to the immunology department at her local hospital. There, she was warned about the potential for worsening reactions and prescribed an EpiPen as a safety measure.
Val was instructed to avoid all red meat, including not just obvious sources but also lesser-known ingredients like gelatin and fat. This meant carefully scrutinizing food labels for hidden mammalian ingredients in sweets,desserts,toothpaste,and even some vaccines.
Professor Arshad, a leading authority on AGS, emphasizes that “There is no cure for alpha-gal syndrome so people affected need to avoid meat strictly.” He further explains that managing the condition can be challenging due to the potential for reactions even from small amounts of meat or inhalation of cooking fumes
Val expresses the difficulties she faces, particularly at buffets where cross-contamination is a concern. ”It’s very hard at hotel buffets as there can be cross-contamination from spoons and utensils and I have to check the food labels on everything.”
“I thought the idea of a tick causing all this was ridiculous and that I was going mad. I hope my story raises awareness that AGS is in the UK.”
## Unmasking teh Mystery: An Interview wiht Val Smith about Alpha-Gal Syndrome
**Interviewer:** Welcome, Val. Thank you for taking the time to speak with us about your experience with Alpha-Gal Syndrome (AGS).
**Val:** It’s my pleasure. If sharing my story helps raise awareness about this complex and often misdiagnosed allergy, I’m happy to contribute.
**Interviewer:** You mentioned first noticing symptoms while on a river cruise in France. Can you tell us more about that experience and how you connected it to AGS?
**Val:** It was a truly bewildering experience. I woke up in the middle of the night with intense itching that spread across my body. This had happened a couple of times before, always after eating beef. On the cruise,I did some research online and stumbled upon data about AGS. I recalled being bitten by a tick seven years prior. It all started to click into place.
**Interviewer:** Can you describe what a typical reaction to red meat feels like for you?
**Val:** The strangest part is the delayed reaction. It can be four to six hours after eating beef before I experience symptoms. It often starts with itching, then hives and welts develop. In severe cases, it can make breathing challenging.Knowing that the next bite of steak coudl trigger these symptoms led me to fully eliminate red meat from my diet.
**Interviewer:** How difficult was it to get a proper diagnosis?
**Val:** It was a long and frustrating process. Many medical professionals were unfamiliar with AGS. I had to do a lot of research and advocate for myself to get the proper testing.
**interviewer:** what advice would you give to others who might be experiencing similar symptoms and suspect they might have AGS?
**Val:** Don’t dismiss your symptoms. Keep a detailed food diary and track your reactions. Find a doctor who is knowledgeable about AGS or is willing to learn more about it. You are not alone in this.
**Interviewer:** Thank you, val, for sharing your story and insights. Hopefully, your experience will help others recognize and manage this often overlooked allergy.
**Val:** It’s my hope that by talking about AGS openly, we can raise awareness, improve diagnosis, and ultimately help others navigate this challenging condition.