That "Alpha Gal" Syndrome: She'll Break You Up with Meat and She Ain't Your Friend
Raising awareness for those who are interested in bizarre health issues, how American foods and products are made, veganism, and for those who have an interest in health and wellness.
(Voiceover reading of essay)
Story-at-a-glance:
This essay highlights the personal and widespread impact of Alpha-Gal Syndrome, a potentially life-threatening allergy often misdiagnosed for 5-7 years. It emphasizes the importance of raising awareness due to the allergy's varied and delayed symptoms, and discusses the challenges of living with the condition, including dietary restrictions, social limitations, and the complex journey toward diagnosis and treatment.
This particular post is meant to be a fairly comprehensive overview of alpha-gal to help raise awareness, as well as to document what it is so it can be shared with others. As with ALL things these days, there are experts that say different things. The information that I provide is me sharing what I think I know from my research which could change over time.
I’ve been checking in with myself to feel what’s simmering under my surface recently. What stands out is a potentially life-threatening allergy that many suffer from unknowingly— Galactose-alpha-1,3-galactose syndrome, also known as Alpha-gal or AGS
Common misdiagnosis
Misdiagnosis is common, with many being incorrectly labeled with IBS, Crohn’s, MCAS or chronic hives. The average person endures 5-7 years of misdiagnosis before identifying AGS. Raising awareness is essential because untreated, this allergy can make life miserable.
Calling all outdoors people and children
If you’re an outdoorsy person that likes to hike, bike, hunt etc. or have children who play outside on grass or in the woods, you’ll want to know about alpha-gal. This bizarre allergy is present on every continent except Antarctica.
It typically begins after a tick bite, usually from the Lone Star tick, although they are also looking at chiggers. The bite triggers an immune response to the alpha-gal molecule found in all mammals (except humans and primates). The allergy makes some people react to mammal meats (such as beef, pork, lamb, etc.) and even certain mammal-derived man-made products like personal care items, medications, cleaning products etc.
Sometimes you’ll see it said that people are allergic to red meat when in actuality, it can also be white meat like pork, amongst other things that aren’t even meat.
Definition:
mammal /măm′əl/
Any animal of which the female feeds her young on milk from her own body. Most mammals give birth to live young, not eggs.
From the Cambridge dictionary
Allergy symptoms
Alpha-gal allergy doesn’t act like typical food allergies. Most food allergies trigger immediate reactions. However, alpha-gal symptoms are delayed by 4-10 hours, making it difficult for sufferers to link their symptoms—like headaches, hives, itching, stomach or digestive pain, or anaphylaxis—to the food they consumed many hours before.
My Personal Journey with Alpha-gal
Why am I writing about this? It’s personal to me because I have alpha-gal and have been talking about it a lot recently.
I was recently interviewed by a journalist at a local television station who’s doing a piece about it. She’s been shocked at what she’s discovered and it’s taking her much longer to air than originally anticipated because this is such an unusually varied allergy from person to person. The story keeps getting much wider and deeper.
I’ve also recently met with a West Virginia delegate, Kathie Hess Crouse, who also has it. I read an opinion piece she wrote in the newspaper trying to raise awareness around it.
She says that 3 out of 100 WV delegates have been diagnosed with it and that doesn’t count those that haven’t been. That’s 3% of the total delegates. Imagine how many might have it if they were actually diagnosed.
She’s trying to pass legislation to make it mandatory that doctors in West Virginia report it to the CDC so we can see how many people here have it to try to raise awareness around it.
The weirdness begins…
My alpha-gal journey started in the summer of 2019. I spent about 6 weeks total going back and forth to the west coast on a few different trips to visit with family and friends as I worked my way from Los Angeles up to the Olympic National Forest in Washington to hike with my friends with my final stop culminating in Vancouver.
During my first stop in L.A., I took my mom and brothers to dinner at a nice restaurant. In the middle of the night, I woke up not feeling so well. My palms were unusually itchy. After awhile, I got up and turned the light on. I had hives! I’ve never had hives and wondered what caused them.
As I thought back on the evening, I remembered that I had lobster mashed potatoes and thought maybe I was having an allergic reaction to shellfish even though I had just had lobster a couple of months before. Sometimes though, as we age, we get allergies that we never had before so I thought maybe it was the lobster.
Over the next 6 weeks, I broke out in hives 3 more times…and I hadn’t eaten shellfish. So what the heck was causing them?
I considered maybe they were exercise-induced hives because I was hiking anywhere between 5-12 miles on many days.
But when I got home, I broke out in hives several other times with no shellfish or big hikes so I started to keep a food journal. I knew to do so because health and wellness are one of my jams. After about a dozen cases of hives, I realized one thing common with all of them was eating meat.
An internet hoax?
I told my dad about my pattern with meat. He said that he had seen a weird thing online that said that some people were getting sick from eating red meat which sounded totally like an internet hoax to me so he sent me a link to the information.
I couldn’t believe what I was reading! It shared information about people having health issues after being bitten by a tick. I live in the country, I travel, and I also like to hike a lot. I also knew that I had been bitten by several ticks over time. I most especially remembered that I had removed a tick once with a white spot on it’s back. I had never seen one of those before so it stuck in my mind. That was a female lone star tick.
Self-diagnosis
I’ve been quite fortunate for a long time now to find doctors who work with me in partnership with my health instead of towering over me like a egoic authoritarians.
I’m a very healthy woman who’s quite interested in health and wellness. I know my body well so it’s important to me that my doctors pair their personal knowledge and education with my intimate knowing of my body so we can figure out what’s best for me as an individual.
So, I called my doctor with my self-diagnosis and asked her to run a test for me for alpha-gal. She agreed and the test confirmed that I did indeed have that allergy.
A journey of discovery
From there, I embarked on a wild journey of discovery learning about alpha-gal. Most of us can still eat eggs, poultry, and fish which is a blessing. Many can also eat dairy without reaction.
If you’ve gotten this far, you might think, all you have to do is stop eating mammal meat.
For anyone who has tried altering their diet for better health, especially cutting out the things they love, this can be a challenge. I was lucky because I had already been on a healthier eating journey so I just dug in a little deeper to alter even more of my diet, but I know it’s not quite so easy for most people.
The SUPER sensitive ones
I joined some alpha-gal Facebook groups and got a rude awakening to the wider world of this allergy which made me better understand how blessed I am with my form…so far…because that can change.
Some people are so sensitive with this allergy that their partner can’t even cook bacon, hamburger etc. because they are so highly reactive to these products that the fumes/smell alone send them into anaphylactic shock. They are so sensitive that they can’t even touch things like leather, wool, or even raw hamburger because their bodies go into a hyper-allergic response.
The definition of anaphylactic shock from the Mayo Clinic
anaphylactic shock: Anaphylaxis causes the immune system to release a flood of chemicals that can cause you to go into shock — blood pressure drops suddenly and the airways narrow, blocking breathing. Signs and symptoms include a rapid, weak pulse; a skin rash; and nausea and vomiting. Common triggers include certain foods, some medications, insect venom and latex.
Decoding this allergy
Discontinuing mammal meats is one thing, but the rabbit hole goes even deeper. So deep, as a matter of fact, that many will be quite shocked at what one can learn, not only about meats, but about ALL the products that we use, wear, and consume that are made from mammal products. This realization blew my mind!!
Everyone should be aware of these things for food/product awareness, especially hardcore vegans. People should also know these things if they or their loved ones find themselves with strange, unexplainable physical symptoms one day.
With alpha-gal, one HAS to become an expert at reading, not only food packaging, but ALL packaging on products that one will need to engage with.
Dairy comes from…cows
So, one can quit consuming red and white meats that are now off the menu, but what about all the food products that are derived from mammals like dairy products (milk, ice cream, butter, cheese, sour cream, cottage cheese, cream etc). Dairy is a significant issue, as it’s present in countless foods and pharmaceuticals.
And what about products that contain lactose, a milk derivative? Well, lactose is used in all kinds of pharmaceuticals as a binding agent in capsules and tablets such as these very common medications: levothyroxine (Synthroid) , atorvastatin (Lipitor), metformin (Glucophage), simvastatin (Zocor), omeprazole (Prilosec), metoprolol (Lopressor), albuterol (Ventolin) etc., but there are so many more!
Yes, hyper-sensitive people can be allergic to those medications in tiny amounts which can send them to the emergency room...if they can make it there. Many have to carry epipens.
Gelatin, collagen, and food gums
Wikipedia says that “gelatin is a collection of peptides and proteins produced by partial hydrolysis of collagen extracted from the skin, bones, and connective tissues of animals such as domesticated cattle, chicken, pigs, and fish.”
So gelatin, found in supplements, jams, jello, gummies, peanuts (it’s a common binding agent for flavorings), cereals, and even medications, is another hidden trigger for alpha-gal sufferers. This includes gel caps that are in medications and supplements.
Food gums are in e.v.e.r.y.t.h.i.n.g.
Food gums are often added to processed foods to modify their texture to make them more palatable and creamier (ice creams etc), keep them more shelf stable to insure foods made with fats and water don’t separate (baked goods), and to keep foods more soft and pliable (tortillas).
Some names for food gums are xanthan, guar, locust bean gum, carob gum, gellan, carrageenan and agar agar. You know how much we love our foods that are creamier with textures that feel good in our mouths. Yum! But they’re potentially dangerous to those with AGS.
Carrageenan is a special little devil that seems to be everywhere. It’s made from red algae/red seaweed. So why is that a problem? It is very similar in molecular make up to alpha-gal so the body can mistake it for that allergen and react. It’s in so many food and body products that you would be shocked.
But wait, there’s more
Mammalian by-products are added to foods, medications, personal care items, household items, and sometimes even industrial products. They’re in shampoos, cosmetics, soaps, skincare, toothpastes, personal care products, sunscreens, & body lotions.
Here are some of the weirdest products with mammal in them that blew my mind!
Spring water, white sugar, flour - During processing of many of these products, they’re filtered with bone char which is made by charring/burning animal bones. Imagine all the foods that have these 3 ingredients in them!
Toilet papers - some contain lanolin (sheep), gelatin, stearic acid (animal fats).
Cancer drugs, anesthesias, and more - According to Wikipedia, alpha-gal was discovered when doctors found that some cancer patients had delayed allergic reactions to Cetuximab due to the drug's alpha-gal carbohydrate component.
Vitamin D & magnesium stearate - Often made with lanolin (sheep) and/or mammal sources.
Heparin is made from porcine/pork by-products.
One woman, despite confirming with doctors and the lens company that her cataract surgery lenses were free of mammal products, had a reaction post surgery because they failed to disclose the lenses were dipped in heparin.
Sad fact
Some people are so sensitive with alpha-gal that they can’t kiss or share intimacies with their partners who eat meat. Many women have allergic reactions to their partner’s semen who eat meat.
Vegan or cruelty free does not necessarily mean mammal free
According to Alpha Gal Information.org, “Cruelty-free does not mean vegan. Cruelty-free products have not been tested on animals, but they may contain animal-derived ingredients, including ingredients derived from mammals.”
”In the U.S., the term “vegan” is not regulated by the FDA and is no guarantee that a product is mammal-free.”
I never realized how many of our non-edible products that we don’t wear had mammal products in them! Did you?
Relationships and social life
This allergy significantly impacts personal relationships and social life. Imagine your partner cooking a hamburger or bacon and you break out in hives or go into anaphylactic shock just from the fumes. Or worse, imagine having a small child with alpha-gal and needing to protect them from exposure to countless products when they’re away from you at school or social events. Many AGS kids have to be home-schooled.
Social events, travel, and dining out become logistical nightmares, filled with risks of cross-contamination. No family or church picnics or cookouts.
I’m telling you that people are dying locked up in their houses because they can’t go out into the world. Just driving by Burger King sends them into anaphylaxis due to the fumes!
Sometimes we just don’t realize how good we have it until we run into someone who has it much worse.
SAAT treatment for relief
Western medicine says that it has no cure for alpha-gal, but alternative health practitioners offer a potential solution for some sufferers called SAAT (Soliman Auricular Allergy Treatment). The SAAT treatment is a specialized acupuncture technique that uses small needles placed in the ear, that don’t hurt, for 3-4 weeks to treat specific allergies.
My SAAT treatment
I had a SAAT treatment in 2021. It was very effective for me and I was able to eat meat for 3 years…and then I got bit by another tick. I recently got another treatment and just took my needles out just a few days ago after them being in for a month. I have to slowly reintroduce very small amounts of meats so it may take a little while to know whether it was effective this time or not.
That said, it doesn’t work on everyone and sometimes one needs to return again to get another treatment. For some, it doesn’t work at all.
Symptom relief
As you’ve seen, we’re all different in our symptoms and what products we take to keep symptoms at bay or to get relief from for hives or gastrointestinal issues.
I’m able to use Benadryl for my hives, although some can’t take it due to there being some mammal in it. I can also take AGS friendly Unisom Sleep Melts which seems safe for the majority of us, as well as Pepcid to relieve heartburn that comes up now and then.
Fascinating, yet completely tragic for so many
Even though I have it, I’m completely fascinated with this very strange allergy.
Between all that I’ve mentioned above with the common foods and products that most of us use daily and the fact that the majority of doctors have absolutely NO CLUE about it, thereby misdiagnosing it over and over again, it’s a crazy, erratic allergy indeed for which there is no one size fits all reaction nor solution which can make it really tough to get diagnosed and live with.
I just feel fortunate that mine comes in such a mild form with primarily only getting hives, but that can change over time and it can get worse.
If you know someone who has been having strange health issues that don’t seem to go away that they can’t seem to get diagnosed properly, you might want to forward this post to them.
And I’m always here for questions.
Resources
Here are some resources that might be helpful to better understand alpha-gal and the products that might affect you if you think you have it.
My Link.tree for additional resources
CDC Alpha-gal Case Reporting Form
This is the reporting form for the CDC, as well as to report to the WV Department of Human Resources which hasn’t created their own form yet since this is so new.
Alpha-gal information.org website
Videos, Podcasts, Articles from the Popular Press, Informational Websites, Blogs, and Social Media
Alpha-gal Facebook support group
Two Alpha Gals on YouTube
Alpha Gal (girls only) Facebook group because there are specific issues that we have that men don’t have that may require privacy.
If you’d like to comment privately or share something with me, feel free to message me.
I wasn’t aware of this condition. Learn something new every day. I'm sorry to hear you suffer in this way. I've needed to make modifications to my diet as I've gotten older. I've also developed more sensitivities. I rarely eat pork or beef. I noticed a huge positive emotional shift after discontinuing. My naturopath told me to stop eating eggs because it caused me excema. I rarely eat eggs, as well. I find I'm doing much better with a plant-based diet. Give me a plate of vegetables and beans. Better for me. Better for the environment. I also eat less ever since my ‘spiritual awakening’? — ketamine experience. I've found that I don't need to eat as much as I did before to feel satiated.
I get excited weekly when I receive our veggies from a local farm. I received some things I didn't know what to do with. And, as a result, I've become more creative with my cooking. I stay away from Prilosec and Pepcid as I understand they can cause cancer. It's best not to stop stomach acid entirely (or so I’m told). Always check with your doctor. Digestive enzymes and DGL work just as well for me. The source of my digestive issues was emotional, connected to PTSD, as the brain and gut are connected. Of course, everyone’s different.
My brother-in-law has this. He is having a hard time with his new diet.