So, in the introduction post, I used the term Alpha Gal Syndrome (AGS) and promised to give more information in the next installment. This is that post. It’s a chunk of information to digest, so I will break it down a bit.
How does someone get Alpha Gal Syndrome?
AGS is a tick borne illness, transmitted via saliva exchange when they bite, the same way as Lyme, Rocky Mountain Spotted Fever, Anaplasmosis, Ehrlichiosis, Tularemia, and a surprising amount of others. Ticks pick up the bacteria, virus, or parasites that cause these issues when they bite an infected animal or person, then pass it via their saliva when they bite another. The lone star tick is the primary culprit for the transmission of AGS in the United States. Other species are responsible for transmission in countries around the world.
What is AGS?
While the other tick borne diseases are caused by these bacteria, viruses, or parasites, AGS is different. It caused by the introduction of a carbohydrate called galactose-α-1,3-galactose (or alpha-gal) into the human body. The issue with this is that the alpha-gal carbohydrate is not found in humans, or any primate for that matter. The introduction of this foreign carbohydrate kicks off an immune response that causes an allergic reaction in those individuals when they consume anything that contains it, which happens to be any non-primate mammal. A lot of people refer to it as the red meat allergy.
What is a mammal?
It seems like an obvious thing for anyone who remembers elementary science, but a lot of people think we’re just talking about cows and sheep. Broken down simply, a mammal gives live birth and nurses its young. That means the once popular “The Other White Meat” campaign from the National Pork Board is a big, fat, potentially lethal misnomer. The goal was to distance pork from its reputation as being fatty, but the fact is that pigs are mammals and their meat is still red meat. You would not believe how many people will argue against it, but pork does indeed carry the alpha-gal carbohydrate. A quick rundown of red meats includes lamb, goat, venison, pork, and beef.
So you can just avoid beef or pork and be ok, right?
Given the term “red meat allergy,” it seems like that is an obvious answer. However, the allergy is to the alpha-gal carbohydrate, and that does not hang out just in the muscle. Reactions, their severity, and their triggers vary widely among AGS sufferers, but the reaction is happening on some level regardless of where and how they consume it. That means dairy products, like cheese and milk, can trigger the immune response too. So can products derived from mammal parts and pieces. That’s a topic for another day, though.
What does an AGS reaction look like?
As mentioned before, there is a spectrum of reactions, severity, and triggers. That’s why this is called a syndrome and not a disease; it’s quite challenging to pinpoint the specific terms that would quantify classification as a disease. The most striking difference is that other food allergies are a response to the protein and result in a fairly immediate reaction; for example, when a person with a peanut allergy touches peanuts and breaks out in hives or has swelling in the throat right away. A carbohydrate induced reaction can take 3-6 hours, and sometimes even longer. Therefore, it is significantly more difficult to pinpoint the source of the issue. Responses can include urticaria (hives) and itching, gastrointestinal responses, swelling in the joints or throat, and changes in blood pressure, for example. Often, someone who is having an alpha-gal related reaction will experience symptoms involving 2 or more of these systems, which is called anaphylaxis. This calls for the use of epinephrine, via epi-pen or the new nasal spray. Some reactions respond to the use of an H1 histamine blocker like cetirizine, diphenhydramine, or one of the others people commonly take for allergies. Combining that with an H2 blocker, like famotidine, which are generally associated with digestive issues, often increases effectiveness. Side note: sometimes our immune systems like to get so amped up that we develop protein allergies along with the alpha-gal triggered response. These are not part of AGS, and often occur independently from the carbohydrate allergy, but a quirky little comorbidity that can also help muddy the waters of diagnosis.
How does someone get diagnosed with AGS?
Diagnosis can be quite the experience, as many doctors still are not aware of Alpha Gal Syndrome and therefore have no reference point for the symptoms their patients describe beyond referral to an allergist. And most allergy specialists do not have knowledge of it, either. There is now a blood test, but that has its own issues. With multiple test codes, patients often receive results for the wrong test, and the correct one still is prone to false negatives. Sometimes people, and their doctors, see a low positive and presume that their reactions will be mild, at most. This is a dangerous situation, as AGS reactions don’t seem to care how low or high your test results are and reactions may not be consistent. Today our patient can eat a cheeseburger and not have a noticeable reaction, but the same cheeseburger consumed next week may trigger severe GI symptoms, a drop in blood pressure, and difficulty breathing. It sounds alarmist, but it is the story of my life pre-diagnosis.
Before the test became widely available, anecdotal diagnosis was the available method. Regardless of what kind of symptoms someone is having, my first advice is to keep a food journal for about 6 weeks. Write down everything you consume. Everything. Not just the things that seem to trigger a reaction, because we’ve already established that alpha-gal reactions can take place 3 or more hours after consumption and therefore may be difficult to pinpoint. On top of writing down what you eat, with date and time, you need to track your symptoms with date and time. This can help you narrow down the culprit and also can help validate your health issues. Because you are your most trusted advocate. You know your body, and if you don’t, then I recommend taking time to pay attention to it. Your body will tell you what fuels it well and it will tell you when it is not being fueled properly.
Still have questions? Here are several sites with helpful information:
https://alphagalinformation.org/
https://www.yalemedicine.org/conditions/alpha-gal-syndrome-ags
https://allergyasthmanetwork.org/food-allergies/alpha-gal-syndrome-and-meat-allergy/
https://my.clevelandclinic.org/health/diseases/24493-alpha-gal-syndrome
And stay tuned for my next post to find out where alpha gal is found in our daily lives.
