Alpha Gal Post - What is Alpha Gal?

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.

Alpha Gal Post - New Addition to the Blog

For several years now, I have been ruminating over the idea of adding a section to the blog about Alpha Gal Syndrome. You can tell when I started thinking about it by the change in my book review post titles; I added the “Book Review” designation in preparation for the day when I started including “Alpha Gal” posts. I get a lot of questions. I love to answer them; it is very important to share what I have learned with others, but have often thought it would be super helpful to be able to refer people who want in depth answers to a blog post or series. Today is that day I start to make that happen.

In my next AGS (Alpha Gal) post, I will go into more about what it is. For now, we will go with the most simple explanation: I am allergic to anything that comes from a mammal. It’s sort of like how getting bitten by a radioactive spider gave Peter Parker Spidey sense, except that AGS is transmitted by ticks and I itch furiously on contact with mammal products instead. Instead of Spider-Man’s origin story, which has already been done much better than I can do, I give you this Alpha Gal’s origin story.

It was a bright and sunny day in small town America, fourteen years ago today. There was a big family celebration to honor the matriarch on her milestone birthday. The pictures of Momo surrounded by her great-grandchildren pop up on my social media memories every year; several of them are now married or in college, every one of them has grown significantly since that day at small-town city park. It was a BYOB party: Bring Your Own Burger. There were no food allergies to worry about, and many of the families attending brought beef burgers from the cows raised in their own backyard pastures, including ours. Afterward, our family went back to sit on the porch and watch the kids run around the yard. And then I started itching. Furiously. Everywhere. Within hours, I was covered in hives, my throat was swollen to an alarming point, and I was struggling to breathe. I had taken a couple mega doses of Benadryl at the advice of a multiple family members who were nurses, and they had decided a trip to the Emergency Department was in order.

In 2010, in a small town ED, my beloved husband told the doctor we had no idea what triggered a reaction of this magnitude. I had no known allergies, but the only unknown of the entire day is that I may have eaten a beef hamburger that was not one we brought to the birthday party. The grillmasters had tried to group by family, but there’s a chance there was a mix-up. In the ED, we were informed that I could not possibly be allergic to beef. We were literally told, “No one is allergic to beef.” I was stabilized and released with orders to follow up with my doctor promptly. And we were promptly seen by our family doctor, who referred me to an allergist in the state capital, where they know all about obscure food allergies. State Capital Allergist told me, “No one is allergic to beef,” did a skin test that was inconclusive, and sent me home. At some point, ridiculously expensive Epi Pens were prescribed, and I was told to treat symptoms with Benadryl until they reached emergency level. Since all the highly trained medical professionals said, “No one is allergic to beef,” I continued to eat it.

Note about the quote: It is one we often use in our house, because it is uncanny how many people have said the same thing the same way in the course of our experience.

There were a couple more ED trips over the next five years. The slightly bigger small town where we lived finally got a Western Sizzlin’ and our friends would come from Small Town to eat dinner there with us periodically, finally realizing that we needed to end our evenings with dinner, because I developed digestive distress every time we ate. And then we moved to our current Big Small Town. Our first place here was in an apartment; we had some delightful neighbors, several of whom became friends and were very supportive after my beloved had to take me to the ED in the middle of the night. One came to me, intrigued by what I had told them about my experiences and certain it had to be the result of something systemic; E had been practicing as a hematologist in Iraq before her family came to the US and was in the process of becoming licensed to practice here. E collected all the information I could give and went into research mode. She came back to me after a week or two and asked if I have ever been bitten by something called a tick. I have lived and played in an area highly populated by ticks since middle school; it’s not uncommon to pull several off after walking out in the yard. Although E had never heard of such a creature - she informed me her neighborhood had bombs, not bugs - I could say with confidence that I have been bitten by something called a tick. She recommended that I cut out meat from all mammals for six weeks and see if I could detect a difference. Within two weeks, I felt better than I had in years! With no accurate blood test for Alpha Gal Syndrome at that time, diagnosis was based solely on symptoms and the results of an elimination diet. Unfortunately, information was extremely limited, and the sum of the information was to eliminate meat from mammals.

In 2020, I found a support group on social media and learned that there had been many advances in understanding AGS. I had not eaten meat from a mammal in six years, but was still having digestive issues. I had also developed a less-than-stellar reaction to the goat milk lotion I was purchasing from a friend who handcrafted her delightful products from the goats her family raised on their farmstead. Anywhere I applied the lotion would promptly itch, burn, welt, and peel. On flashbacks of that one time when I was a kid and watched The Silence of the Lambs to prove to my cousin that I am not lame, I promptly discontinued the lotion. But information from the support group helped me realize that products made from mammals can also trigger AGS reactions. I then went fully vegan. My digestion got better, my skin got better, the full body itching and perpetually slightly swollen throat got better! And then I found out that several people had gotten some relief by using a specific acupuncture procedure. I was skeptical, but the procedure cost was the same as a trip to the ED and I might not have to worry any more about cross contamination or ambiguously labeled ingredients. Arrangements were made, needles were placed for a 4 week stay in my ear, and six weeks after the needles were placed, I was able to eat a slice of cheese pizza at a social event and did not embarrass myself with GI distress! It’s not a cure, and relapse happens. However, I don’t know about you, but I am a huge fan of a GI distress-less life!

The last fourteen years have been quite a learning experience. Now, I would like to share those experiences with you, dear reader. Though, I have to confess that there are some parts I am not as eager to share; I do believe it is important for people to understand. In the case of someone who is also struggling with AGS, the embarrassment of sharing some of these experiences are worth it if they validate something strange you also experience. And while I do enjoy some creative writing, there will be no embellishment, hyperbole, or speculation on this topic unless clearly noted. So, buckle up, Buttercup… but not with a leather belt, if you are also an Alpha Gal (or Guy!)