Frequently Asked Questions
- Is AGS really caused by ticks?
- Yes, the only known cause of AGS is to be bitten by a tick carrying the alpha-gal molecule.
In the US, the Lone Star tick is believed to be the most common vector for AGS. (TODO add picture & link)
There is not definitive proof at this time, but there have been multiple studies drawing strong correlations between tick bites and AGS diagnoses.
- What are the symptoms to look for?
- The most common symptoms are:
- skin irritation (~90%): itching, hives, rash; swelling of hands / feet
- gastrointestinal (~60%): diarrhea, abdominal cramping, vomiting
- cardiovascular (~35%): low blood pressure, rapid pulse, feeling faint
- respiratory (~35%): difficulty breathing, shortness of breath, wheezing, chest pain, cough, hoarse voice
- (a wide variety of other symptoms have been known to occur, more rarely)
Reactions mostly occur 2-8 hours after eating mammalian meat; this often results in waking up late in the night with GI issues or skin reactions.
Note that reactions are not always consistent; the may not occur after every exposure, and can be affected by other factors such as exercise or alcohol consumption.
Other signs which may suggest AGS are:
- When avoiding mammal products, you experience a notable improvement of the above symptoms.
- You have had a tick bite, to which you reacted differently than previous bites from years before.
- Should I ask my doctor about AGS?
- If you have had a recent exposure to tick bites, or experience unexplained allergic symptoms as described above,
it may be a good idea to talk about it with your doctor.
AGS is often misdiagnosed, since it has inconsistent symptoms, and was only discovered in the 2000s.
- How can I find out if I have AGS?
- You will need a medical professional to ensure you get the correct test, and to interpret the results.
Diagnosis usually involves a blood test to check for alpha-gal specific IgE antibodies.
Most diagnostic labs will be able to take a blood sample, and ship it to a specialized lab for testing.
In the United States, this will likely cost between $50 and $250.
- What is "Alpha Gal"?
- Alpha-gal is a carbohydrate molecule, full name "galactose-α-1,3-galactose", often shortened to "α-Gal" or "alpha-gal".
In scientific literature sometimes abbreviated as "α-1,3".
TODO chemical picture
- Where does Alpha-Gal come from?
- Alpha-gal is commonly found in cell membranes, tissues, and fluids of most mammals, excluding monkees/apes/humans.
Other sources of alpha-gal you are most likely to encounter are carrageenan, which is a food additive extracted from red algae, and the saliva of some ticks.
More exotic natural sources of alpha-gal include: some fish eggs (aka "roe", including flounder eggs),
green sea turtles, cobra venom, eyes of some non-mammals, several ticks, some worms, one species of mosquito,
fungi (not found in edible mushrooms), bacteria, protozoa, and viral envelopes.
There are other related chemicals which may also trigger an allergic reaction to someone with AGS, such as
"alpha-galactosidase" which is the active ingredient in Beano.
- Is Alpha-Gal found in all mammal products?
- Alpha-gal has been found in mammal muscle (meat), organs, fat, fluids, and other tissue.
Alpha-gal survives many types of processing and purification processes;
unlike proteins, alpha-gal is not chemically altered at normal cooking temperatures.
It is still present in broth, boullion, pasteurized milk, gelatin, and some "natural flavorings".
Some people experience alpha-gal reactions after exposure to medical drugs, medical products,
personal care items, or any other product with a mammalian ingredient
- What ingredients should I look out for which may contain alpha-gal?
- The following are common names for products and ingredients made directly from mammals:
- beef, pork, lamb, goat, venison
- leather, fur, wool, cashmere
- milk, whey, rennet, casein / caseinate
- lard, tallow, suet
- gelatin, collagen, lanolin
- pepsin, pancreatin / pancrelipase, castoreum
Some named ingredients are often derived from mammals, but may also be made with plants instead:
- shortening, lactose, lactic acid, oleic acid
- monoglycerides / diglycerides, glycerin / glycerol
- stearic acid / calcium stearate / magnesium stearate
- Vitamin D3 / cholecalciferol, Omega-3s / DHA / EPA
- natural flavors
Also notably carrageenan, a food additive made from red algae, contains alpha-gal.
- What other household items might contain alpha-gal?
- Numerous household products may contain mammal products, including:
- soap, shampoo, conditioner, hand sanitizer, toothpaste
- lotion, make-up, perfume, air freshener, deodorant
- cleaning products, laundry detergent, fabric softener, dryer sheets
- toilet paper, condoms, crayons
- Is there a cure for AGS?
- There is no known cure or treatment for AGS.
Most people with AGS manage their condition by minimizing contact with alpha-gal.
At a minimum, you should avoid eating mammal meat, drinking milk, or exposure to Lone Star ticks.
Individuals have different tolerances to different foods and other products; so to some extent
you will have to monitor your own reactions to determine what works for you.
Your doctor may also recommend some medications to reduce your allergic reaction.
People with AGS are recommended to carry an epipen, in case of a severe anaphylactic reaction.
- What is an epipen?
- An epipen is any epinephrine auto-injector, used for the emergency treatment of severe allergic reactions (anaphylaxis).
The term "EpiPen®" is actually the brand-name for the Pfizer product, but it has become a generic term (like "kleenex").
If you have an epipen, it is very important that you learn how to use it -- there are different designs of
epipens, instructions learned for one may not apply to another.
If you ever need to use your epipen, you must immediately seek medical attention, because even if symptoms
improve they may return.