ALPHA-GAL SYNDROME, AGS

[htmb]

In February 2023, on a cold day in North Florida, I was bitten by a tiny Lone Star tick. Unbeknownst to me at the time, the saliva from the tick created an allergic response in my system that developed into an allergy to all mammals with the exception of humans and higher primates. I don’t eat much meat anyway, so had consumed a minimal amount between the time of the bite and a reaction I had to pork about five weeks later.

An allergic response to mammal is different from reactions to foods such as peanuts where a person reacts almost immediately after exposure. Most of the time, when someone with AGS is exposed to mammal meat or mammal ingredients in items such as medications, household items, and toiletries, the reaction occurs two to six hours later, probably due to the way our bodies digest food.

My daughter was to be married in March, so the whole family was gathered at my home. I had made a nice dinner of pulled pork along with various side dishes and desserts. A couple of hours after eating, my back and right arm started itching just a bit. Because I’d never reacted to foods this way before, I didn’t think much of it, even though I was still itching at bedtime. About three hours later I woke up in horrible pain, covered from head to toe with raised hives. My skin felt like it was completely on fire.

I’ll continue my personal story later, but thought I’d begin sharing this information here because AGS has been slowly spreading around the globe, it’s not just in the US. It’s a miserable allergy, but fortunately I’ve been able to control my reactions by not only avoiding all mammal meats and dairy products, but also by being extremely careful to avoid medications, vitamins, and household products that might either contain mammal or carrageenan, a red seaweed that mimics the Alpha-gal isotope.

This allergy seems very new, though it’s probably been around for quite a long time. While there are some crazy theories and speculations about its origins, there are also some good informational resources. Here’s one of the best I’ve found: Alpha-gal Information.

From their home page:

Alpha-gal syndrome (AGS), or mammalian meat allergy, is a tick-induced allergy to galactose-α-1,3-galactose (1). This sugar, commonly known as alpha-gal, is found in all mammals except for humans and some primates (2).

Products made from mammals can also contain alpha-gal. These include mammalian meat (like beef, pork, and lamb), milk and dairy products, gelatin, medications, medical products (like heparin and vaccines), personal care products (like lotion and make-up), and many other items. (3)

Reactions, which can be life-threatening, may be immediate, as in the case of injected drugs, or delayed from 2 to 10 hours, as is typical after the consumption of mammalian meat (1).

[kerouac2]

When you first told me about alpha-gal this spring, it seemed hard to believe due to the overwhelming scope of "mammal meat." But I have read up on it since then and understand what a problem it is. The worst thing seems to be that there is not yet a solution to combat the ailment.

And of course one of the worst details is that it is still rare enough that most doctors do not have the training to recognise it.

When I discovered my allergy to penicillin, the symptoms were quite similar -- intense itching and a rash. But luckily, penicillin has never been part of my daily diet.

[htmb]

You’re so right, Kerouac. Most doctors here in the US not only don’t know much about AGS, they also don’t want to take the time to learn.

I also had a reaction to penicillin many years ago. While it was bad enough for me to seek medical attention, the first reaction I had to the pork was nothing in comparison. Incredibly painful!

[htmb]

I spent the rest of the night taking Benadryl and, later, Zyrtec. Finally, after a few hours, the pain and the visible rash began to diminish a bit. I was able to see the on-call physician later that morning and I couldn’t have asked for better care. The young doctor was a new staff member and seemed somewhat educated about AGS. I had also known her from her pre university days, and had always admired her intelligence and level-headed behavior.

Before meeting with the doctor I was interviewed by a medical student, which is typical in a university hospital, medical school setting. Because I’d educated myself weeks earlier, right after the bite and initially thinking I needed to watch out for Lyme Disease, I had already guessed I had AGS. I had discovered the tiny little tick was a Lone Star, not the deer tick that carries Lyme in our area. I had also learned a little bit about AGS and that it was transferred by the type of tick that had bitten me. I explained all this to the medical student and he looked at me like I was some weirdo, crazy person and certainly not to be believed. Then the doctor entered the room, confirmed my hypothesis and, after checking me over just a bit, wrote out a prescription for EpiPens and a referral to an allergist for testing.

I later heard from my regular physician who said it was obvious I should avoid beef and pork in the meantime (with AGS, beef and pork are only part of what a person should be avoiding, but this isn’t something doctors typically know much about).

My one mistake was not asking my internal medicine physicians to immediately have me tested for AGS. They would have had to look up the required testing code, of course, but they could have issued an order with the lab. As it was, I left a few days later on a planned trip lasting almost four months, and wasn’t tested until mid-July.

[htmb]

For patients with suspected alpha-gal, a blood test (serum testing) looks for immunoglobulin E antibodies (IgE) to alpha-gal. A positive blood test is anything >0.1 IU/mL for IgE to alpha-gal.

For anyone wanting more in-depth, thoroughly researched information, here’s a good starting place:

Diagnosis & management of alpha-gal syndrome: lessons from 2,500 patients, Scott P. Commins

Alpha-gal Syndrome (AGS) is a unique allergy to non-primate mammalian meat (and derived-products) that is associated with tick bites and is due to a specific IgE antibody to the oligosaccharide galactose-α-1,3-galactose (alpha-gal). AGS has many novel features that broaden the paradigm of food allergy, including that reactions are delayed 3–6 hours after exposure and patients have frequently tolerated red meat for many years prior to the development of allergic reactions. Due to the ubiquitous inclusion of mammal-derived materials in foods, medications, personal products and stabilizing compounds, full avoidance is difficult to achieve.

[htmb]

Alpha-gal Syndrome can affect people in many different ways. It’s often called an "anytime allergy" rather than an every time. An example would be a person who eats beef several times with no adverse reaction until they suddenly experience a severe breathing event or a dramatic digestive problem. Or both. Add in the fact that most reactions don’t happen until several hours after food has been consumed and you can see why it’s often difficult to diagnose. Many folks wake up in the middle of the night, severely ill, but unaware why.

There are also different tolerances to meat and meat by-products. Some cannot tolerate medications that contain the slightest little bit of mammal, while others have no issue taking a pill that has a bovine coating. Many can consume dairy; others cannot. And, to make things even more challenging, problems with foods can become more severe over time, especially if a person receives another tick bite.

At this point in time, there is no real cure for AGS. Avoidance seems to be the best, and only, way to deal with it, along with the use of regular antihistamines, as well as emergency medications during a flare up. Carrying an EpiPen is essential because there’s just no way to predict when an emergency situation might develop. Hopefully, it never does, but there’s always a chance.

[bixaorellana]

Good grief! Thank you for this complete explanation about something that obviously needs to be better known.

I had no idea that so many things were mammal-based -- "a pill that has a bovine coating". What the blinkety-blank?! What's really chastening is how a person like you, with apparently no particular sensitivities to most substances, suddenly underwent a frightening and painful reaction.

Looking forward to whatever else you choose to share about this, so that we might all be alert to its possible onset.

[htmb]

Thanks, Bixa. Helping to better inform the public was one reason I decided to share. It’s a nasty problem. One change many of us would like to see happen in the US is more transparency in labeling. It’s really pathetic when AGS sufferers are having to contact manufacturers to ask what exactly is in the "natural flavorings" listed as a product ingredient, and "is their magnesium stearate plant or animal based." In the EU and UK I had a much easier time purchasing products because lists of ingredients were typically shorter and much more concise.

If you have any gel coated meds or vitamins, check the inactive ingredients. Often the gel coating is bovine or porcine based. Mine were. Also, many paper products such as toilet paper, paper towels, etc, especially those made of recycled materials, contain a mammal-based glue and/or contain (sheep) lanolin. Never a problem for me in the past but, this year, buying the wrong paper products has caused me all kinds of woe (in the US and France, England and Scotland).

I have lots more information to share, including my AGS testing results and other medical experiences, so will continue to add info to this thread over the next few days. Fortunately, for me and many others, AGS hasn’t been a huge problem, but some people haven’t been as fortunate.

[mossie]

That does not sound good. I do hope you get some relief

[htmb]

Thanks, Mossie.

This doctor gives a pretty good explanation of the basics. She’s based in the Long Island, NY area where AGS seems to be rampant. Other areas of the US reporting high infection rates are in the states of Virginia, Arkansas, and Missouri.

[cheerypeabrain]

Gosh thats horrid htmb...good luck with finding a treatment that works! Have you got a card to carry or a medi bracelet 'just in case' (altho I hope that you never need it)

[htmb]

Sept 4, 2023 15:55:40 GMT cheerypeabrain said:

Gosh thats horrid htmb...good luck with finding a treatment that works! Have you got a card to carry or a medi bracelet 'just in case' (altho I hope that you never need it)

Thanks very much, Cheery. Unfortunately, there’s no cure, so far. Just avoidance. For the most part, I’ve had good success with staying away from allergens. Avoiding meat isn’t hard at all, but avoiding it when it’s a hidden ingredient has been a challenge. I really thought some of the members of an AGS group I joined were overacting, but I’ve since changed my tune. So far, I’ve had to swap out my regular over the counter medications, throw away my wool dryer balls and change to bamboo, switch my bath soap and make-up, etc. The idea is to get rid of as mammal products as possible. Some people can tolerate dairy, but even the little bit of dairy I was eating before is a no-go for me.

While I was staying in France and the UK, I had a much easier time of it and my reactions while there were minor. Since coming back to the US it’s been a bit harder. While sitting inside a car dealership while my car was being serviced I had a reaction to some building materials they had been using in a small area of the huge space. Tile grout, paint, and cut pieces of drywall. Much of it contains mammal. It’s all a bit bizarre.

I do have some information I carry with me, written in both French and English. I also have a kit containing two EpiPens, as well as some other meds to take in case of a reaction (before using the Epis). I’ve just recently purchased a tacky bracelet, too. It’s engraved with general information on the visible side, with emergency contact information on the back.

The main issue for me is eating out. I can count on one hand the number of times I’ve eaten out since March. The risk of cross-contamination, even in a place that professes to follow good standards, is just scary. Plus, I hate to walk into a restaurant and ask for some sort of variation of ingredients just because I have a problem. Even when eating at vegan restaurants, there’s the risk of consuming carrageenan because it’s often used as a thickener in vegan food.

[htmb]

I finally saw the allergist in mid-July. He didn’t want to test me for Alpha-gal and was skeptical when I told him my self-diagnosis. Even wrote in my medical records that he didn’t want to have me tested, and just thought I had broken out in a full body rash because I was excited about my upcoming trip. This comment made me very unhappy.

After I glared at him for awhile, he ordered the test which came back extremely high for the Alpha gal carbohydrate (42.0, anything .10 or higher is considered positive). The test also measured allergies to beef, pork, and lamb proteins and they also showed positive results (most likely due to the AGH). When I met with the allergist a few weeks later his only comment was that maybe my results were a false positive. Good grief! I suggested he enter the information into my medical records under "allergies" to avoid an accident, just in case I walk into the hospital door and someone decides to give me heparin (an anticoagulant, usually sourced from animals that go moo or oink). He quickly complied.

The allergist really wasn’t much help. I had suspected he wouldn’t be because that seems to be the current pattern in the US at the moment. Most allergists have heard of Alpha-gal, but they don’t know much about it, they didn’t study it in medical school, and many seem to be very skeptical. My allergist wanted to prescribe strong antihistamines that I don’t think I need, and also send me for a sensitivity test to see if I’m allergic to lanolin. I already know I am, due to my own experiences. I certainly don’t need a doctor to rub lanolin on my skin to know it causes an allergic response. Basically, most of the helpful information I’ve learned has been through the reporting of very kind people who have been just as frustrated with the situation as me.

A few weeks ago the CDC put out a report warning the medical profession about the dangers of alpha gal and Lone Star ticks. It seems that a lot of people have been infected, but have no idea what causes their strange symptoms. Many don’t even remember being bitten, but they’ve suffered with strange ailments for years. Some even have permanent damage as a result of terrible inflammation.

Here’s a well-written article from The Guardian, kindly sent to me by Bixa. I believe I’ve posted it before, but wanted to add it to this thread to keep everything in one place:
Nearly half a million in US may have been affected by tick-bite meat allergy

[bixaorellana]

What an ordeal! It's one thing to have to give up eating out and to have to scrutinize every product you buy, but it's grotesque to have to beg to be properly diagnosed. Of course, you should be punished for daring to seek information on your own. Aside: I thought allergists were just dying to have patients tested for reactions to everything under the sun, & here this s.o.b. was withholding medical testing from you. And then to suggest your dramatic rash was because you were looking forward to your trip, as though you were an excitable puppy or something!

At least you made him put some comments in your records which should protect you if you wind up seeking treatment for a bad reaction.

It must be a minefield worrying about what might trigger a reaction. Reading your experiences, I racked my brain for why building materials would have mammalian ingredients -- glue made from hooves?

Htmb, you say there is currently no cure. In your investigations, have you come across any people who "grew out of it" or at least became less violently sensitive to mammalian ingredients?

[htmb]

Of course, it’s all anecdotal, but I’ve heard some people claim to be free of symptoms and able to eat mammal meat again. Hopefully, that’s really the case, but it’s hard to know without real, hard evidence. Plus, this allergy hasn’t been studied for long so there’s just not a lot of data. One of the keys seems to be avoidance of Lone Star ticks. With each new bite a patient’s condition is likely to worsen. Those who avoid new bites appear to be less reactionary over time. The tick I found was fully attached to my leg, but was very tiny like it hadn’t been there long. Compared to others, my reactions have been mild, so I believe I have been very fortunate.

There’s also a treatment some have tried. It’s called SAAT. I really don’t know enough about it to comment, but don’t believe it’s for me. It sounds a bit like quackery. Maybe I’m wrong.

There’s a whole lot of information on the internet about what animal parts have been used in building materials, crayons, plastic, tires, nail polish, sugar (some sugar, as well as some bottled water is filtered through bone char), etc. I’ll spare you the ”vegan” news, but I’m guessing some of the more prominent vegan websites would have the most up to date list of sources.

I’m just hoping I’ll be able to wear my wool sweaters next winter.

[htmb]

Fact or Fiction: "… there is some indication that when Martha Stewart went to prison, it involved alpha-gal." The explanation can be found here: Alpha-Gal Allergy – with Dr. Scott Commins. Look under the section titled "Alpha gal and its discovery."

[Kimby]

I’m gob-smacked by the quirky and unfair nature of this ailment, and very much impressed by your equanimity in dealing with it, htmb.

Maybe a dumb question, but can you sit on leather car seats or sofas? Wear a leather belt? Wear a wool sweater or fur-lined gloves?

We don’t have Lone Star ticks in Montana, or deer ticks for that matter. Rocky Mountain Spotted Tick Fever and tick paralysis are 2 tick-caused conditions we do have but I don’t know anyone who’s had either.

I hope you are able to clear the allergy eventually.

[htmb]

Oct 14, 2023 3:16:18 GMT Kimby said:

I’m gob-smacked by the quirky and unfair nature of this ailment, and very much impressed by your equanimity in dealing with it, htmb.

Maybe a dumb question, but can you sit on leather car seats or sofas? Wear a leather belt? Wear a wool sweater or fur-lined gloves?

Not a dumb question, at all. Many people with Alpha-gal report reactions to all of the above, as well as to their own pets and animals. As for me, personally, I’m just not sure. I have a few wool and wool-blend sweaters, but it’s been too hot to try them on. I don’t plan to purchase any more wool clothing in the future.

[kerouac2]

I always wonder about testing to see if the reactions are diminishing over time. I'm not saying that you should eat a steak or have a big piece of cheese, but it would be a bit radical to decide that this is your fate and that nothing will ever improve.

I am always amazed by the number of people from the United States with severe allergies who write on various forums that many of the problems disappeared in Europe for mysterious reasons, but there is different lactose, different enzymes, different hormones, etc. and I doubt that there has been enough research on different reactions depending on the geographical zone.

[Kimby]

Mainly food is more healthful in Europe because they allow fewer additives. Americans diet is loaded with chemicals. If our Government gave a damn about it’s citizens it would ban many of the things we consume daily as “food”…

[htmb]

I’m sure regular testing will be in my cards (I actually have additional testing scheduled soon), but suspect this is a life-long allergy. I’m okay with that scenario. There’s plenty of good food I can eat.

My problem now is that every time I have some sort of medical treatment I feel like doctors are trying to kill me. I reacted after my dentist appointment for a regular teeth cleaning, as well as my dermatology appointment where I had a suspicious spot biopsied. Even though the medical professionals in those offices tried to use materials they "thought" safe for me, my face and head still itched for several days. At least it wasn’t worse.

The thing about alpha-gal is, it’s an "anytime," not an "every time" allergy, which is one reason why people often don’t realize they have it. For some, noticeable reactions don’t necessarily happen after every consumption of mammal meat. Even then, a person could go from no reaction to anaphylaxis with no warning. Also, while there might not be a noticeable reaction, it’s thought a person with AGS who consumes mammal can cause some serious internal damage to organs, arteries, etc. It’s obvious to me, it can be very dangerous for someone with alpha-gal to consume mammal products. It’s not like someone who is vegan, but decides to have a "cheat" day every once in awhile.

It’s true that food products in the UK and EU have less chemical ingredients when compared to the US. Traveling in the UK and EU, it is much easier for me to assess a product to see if it’s safe. Plus, in the US, we add all kinds of unnecessary miserable crap to our food products. Even enriched foods such as some orange juice, flour and cereal can be unsafe for someone with AGS because the ingredients, such as Vitamin D3, are often mammal sourced.

[mickthecactus]

It’s really horrible htmb, I’m so sorry for you.

[htmb]

Oct 14, 2023 15:21:22 GMT mickthecactus said:

It’s really horrible htmb, I’m so sorry for you.

Thanks, Mick, but for me it’s not so bad. There are certainly much worse problems, health-related and otherwise.

[htmb]

Anaphylaxis UK Alpha-gal Fact Sheet

[mossie]

My deepest sympathy, get better soon

[htmb]

Oct 16, 2023 18:20:04 GMT mossie said:

My deepest sympathy, get better soon

Many thanks, Mossie


I’d debated whether or not to have a patch test, but decided to give it a try after reacting to materials used by both the dentist and the dermatologist. Yesterday the dermatology specialist put 100 tiny samples of ingredients in a grid all across my back (without piercing the skin), and then covered the whole area with surgical tape. She included some of the substances I’d brought in, too, such as toothpaste, makeup, and hand sanitizer. It will take a week to complete the test, but the tape should be removed tomorrow afternoon. Hopefully I’ll be a little more comfortable then. At the moment, I feel like I’m wearing a thin, unyielding turtle shell on my back.

[mich64]

Oh my htmb. Having taken a break from my computer I had missed this thread about your diagnosis of AGS. I knew nothing about AGS until reading your post. I am sorry to read that you have been afflicted with this condition. Knowledge is power and you seem to have immersed yourself in educating yourself in how to cope and how to remain vigilant and aware of any issues that may arise.

The other thing that struck me was that the allergist seems so hesitant to even listen to you let alone help you.

I think having the patch test will give you more information and that will be helpful.

I wish you the best of care and health and I am glad to read that you have your kits and pens because there are so many unknowns you are encountering.

[kerouac2]

Your back sounds like a bingo card, htmb. I hope you don't have a line of winning numbers.

[htmb]

Thanks for your kind words, Mich. I think the allergist just doesn’t know what to do with me, so has passed me off to the dermatologists who seem to be a bit more knowledgeable about how to deal with my issues. It seems to be typical, especially in my area where Alpha-gal is very rare. Hopefully the testing I’m going through now will provide useful medical information for the future. It would be nice to visit doctors and not have to be overly concerned about them triggering an allergic reaction.

A bingo card is a good way to describe it, Kerouac, though in actuality all the allergens attached to my back come pre-loaded onto individual strips of adhesive. They look a bit like wider, longer, flatter popsicle sticks. Each strip is about 5 cm long (I’m guessing) and holds ten different allergens. They were placed vertically down my back. Then the extra allergens that I provided were each placed separately near my waist. Afterwards, the whole mess was gridded, labeled with purple pen, and then completely covered over with a thick, stiff tape.

[bixaorellana]

That whole thing with patches, adhesive, & thick stiff tape sounds like an ordeal in itself! You're sleeping in that tonight?

(sheesh -- can you at least have a drink, or might that mess up the results?)