Alpha-gal Tolerance Levels

A Guide to Determining Your Personal Alpha-gal Tolerance Level

Everybody is Different!

The thing about Alpha-gal Syndrome is that reactions seem to be as individual as each of us is. About half of us can eat dairy, some have reactions from carrageenan, some of us react to fumes, but most don’t. And reactions can change over time. People get over fume reactions while others who may never have had them before suddenly develop them. It’s a crazy roller coaster ride, but just because we have AGS, it doesn’t define who you are. Here, you know you’re never alone, we’re stronger together and here to help. The important thing to remember is to figure out your triggers & avoid them and otherwise do the things you’d normally do as much as possible.

Jennifer Burton

Alpha-gal Encouragers

Consistent Inconsistency

intra- and inter- individual variability

Unlike other allergies, alpha-gal allergic reactions are “consistently inconsistent”, as Dr. Commins puts it, and are an “any time allergy, not an every time allergy,” as Dr. Sheryl van Nunen likes to say. AGS is characterized by both inter-individual and intra-individual variability. In other words, one person’s reactions can be very different from another person’s, but also each individual can have wildly different and unpredictable reactions to the same foods, in part due to other conditions (called co-factors), like alcohol consumption, exercise, the use of NSAIDs (like Advil), illness, menses, or recent tick bites.

Reactions to alpha-gal vary enormously from individual to individual.

This means:

  • Some people only have to stop eating mammalian meat and organs.
  • Other people need to avoid additional foods, like dairy and gelatin, as well.
  • Still others cannot tolerate a wide variety of foods, personal care and household products that contain only micrograms of alpha-gal.
  • Some people react to airborne particles of alpha-gal, such as those produced by cooking meat.

With each individual, reactions to alpha-gal vary from exposure to exposure, and often over time.

This means:

  • You may react differently to the same foods on different occasions. For example, one day, you may tolerate milk; the next day, it may cause abdominal pain and hives.
  • If you are lucky, you may become less reactive with time, especially if you avoid additional tick bites.
  • If you are less lucky, you may become more reactive, especially if you are bitten by ticks again. For example, you may be able to tolerate everything except mammalian meat and organs. Then one day, dairy products start to bother you or you develop fume reactions.

Whether a reaction occurs to an individual exposure is inconsistent and often appears to follow no identifiable pattern for patients. The lack of consistent reactions is, in itself, almost a diagnostic hallmark. Over time, patients may experience a “progression” to more consistent reactivity and this likely reflects a new tick bite. (1)

Scott Commins, MD, PhD

University of North Carolina

Activity, alcohol consumption, and exercise can have profound influence on reactivity. Some patients appear to have reactions that require co-factors such that they can tolerate exposures in isolation; consistent with a diagnosis of co-factor-dependent AGS. (1)

Scott Commins, MD, PhD

University of North Carolina

Because of the variable and unpredictable nature of alpha-gal allergic reactions, people with AGS always need to carry their emergency kits with their meds, epinephrine autoinjectors, rescue plan, etc. You never know when you might have a bad reaction, possibly a worse one than you have experienced before!

Finding Your Personal Tolerance Level

Your doctor needs to advise you as to what’s safe for you, based on your clinical history, test results, and other factors. Please seek a physician’s advice before attempting to determine your tolerance level. 

If you are newly diagnosed, you might not know how much alpha-gal it takes to cause you to react. There are no straightforward guidelines for determining your personal tolerance level, but some foods, drugs, and other products are more likely to affect you than others. Seek the advice of your physician. If they approve, you may want to the below approach.

When deciding whether to give up all alpha-gal containing foods or just those you conspicuously react to, it’s worth considering research suggesting a possible link between consumption of alpha-gal containing foods, chronic inflammation of the arteries, and coronary artery disease among people sensitized to alpha-gal (2).

Step #1:

Everyone with AGS needs to:

  • Avoid the highest risk foods, medications, and medical products which aren’t safe for anyone with AGS.
  • Be aware of moderate risk medications, medical products, or supplements. If you need any, explore the costs and benefits of less risky options with your physician and pharmacist.
  • Be cautious around airborne alpha-gal, like fumes from cooking meat, until you know whether you react to it. Fume reactions can  come on suddenly are be severe.

Step #2:

If your symptoms persist, including GI symptoms, muscle pain, joint pain, rashes, or other unexplained symptoms which you may have attributed to IBS, fibromyalgia, arthritis, or other conditions:

  • Eliminate moderate risk foods, such as rennet, dairy, gelatin, and carrageenan.
  • Some people stop eating all these foods at once; some try giving up one category at a time, usually starting with rennet and dairy, then gelatin, and finally carrageenan. As everyone’s reactions are different, this might not be the right order for you. For example, some people react more to gelatin than to dairy.
  • Watch out for cross-contamination.
  • If you are still taking medications or supplements that contain any alpha-gal, work with your physician or pharmacist to explore the possibility of alpha-gal-free alternatives.

Step #3:

If your symptoms still persist:

  • Keep a food diary and/or try an elimination diet to help you figure out which foods are giving you trouble.
  • Consider working with a dietician with an understanding of AGS.
  • Eliminate lower risk foods.
  • Avoid all personal care products that contain alpha-gal.
  • Avoid all cleaning and other household products that contain alpha-gal.

Step #4:

  • If you have a pet, explore whether it is causing reactions.

Step #5:

  • If you eliminate all known exposures to alpha and still experience symptoms, talk to your doctor about the possibility that you have other health issues. Just because you have AGS does not mean that you can’t develop other conditions as well.
  • Seek help from the alpha-gal community. There are mammalian byproducts and carrageenan in thousands of food products, and they aren’t always on the label, for example when they are considered a processing agent and not an ingredient. Alpha-gal is also a hidden component of tens of thousands of medications and many unexpected non-food products, from toilet paper, to scented candles, to drywall. Some members of the Facebook group Alpha-gal Support Nonpublic are skilled at helping people figure out what sources of alpha-gal exposure have been overlooked. Post and you will be helped!

 

 

A big question that requires further research is whether all patients with the syndrome should avoid dairy because of the possible link wth chronic inflammation of the arteries. We also need to better understand the risk of reactions to the wide variety of products that may include small amounts of material derived from mammals. (2)

Thomas Platts-Mills, et al.

University of Virginia

Highest Risk Foods

avoidance recommended for all people with alpha-gal syndrome

The primary advice for newly diagnosed patients with AGS is to completely avoid meat of mammals. In most areas of the U.S. this means beef, pork, venison, and lamb. Internal organs are equally or more able to induce reactions and these should be avoided as well, especially pork kidney…Meat and products derived from other mammals such as bison, buffalo, rabbit hose, and goat should be equally avoided. (1)

Scott Commins, MD, PhD

University of North Carolina

Mammalian meat and organs (1)(2)

You may have had mild reactions after eating red meat, but your next reaction could be more serious, as explained above. Thirty to forty percent of people with AGS experience cardiac symptoms ()Don’t play Russian roulette!

Some, but not necessarily all, foods to avoid include:

  • The internal organs of mammals, like liver, heart, intestines (tripe or offal), and especially kidneys, which contain even more alpha-gal than meat. 
  • Mammalian meats, like beef, pork, lamb, bison, venison, goat, horse, rabbit, squirrel, kangaroo, antelope, buffalo, camel, guinea pig, bats, whales, etc. If you aren’t sure which animals are mammals, there is a guide here.
  • Mammalian gut sausage casings (turkey and chicken sausages often have these). Removing the casing and eating the sausage without it is not advised, as severe reactions have occured from this practice. 
  • Animal fat, like lard, tallow, and suet are often in cooked foods, such as gravies, sauces, pastries, pie crusts, tortillas, refried beans, baked beans, vegetable dishes, mashed potatoes, desserts and in fry oil to enhance flavor*
  • Mammalian collagen*
  • Meat broths, bouillon, stocks, and gravy**
  • Meat flavorings, which are often just listed as “natural flavor”***
  • Meat extracts***
  • Other mammalian tissues, cells, and fluids, like brain, nerves, bones, skin, and blood and the products that contain them***

*”Some subjects can tolerate without allergic reactions but should be used with caution” (2)

**”Stocks and bouillon cubes: these are often derived from mammalian sources and additional research is need to understand the risks from these and other hidden exposures.” (1)

***There is a lack of data on the risks related to these mammalian products, but many of us with AGS react to them, and we recommend that others avoid them.

Possibly flounder roe (eggs)

Although there is limited data, a few Japanese studies found that people with AGS also react to flounder roe. In one small study 75% of people with AGS also reacted to flounder roe. (3)

Moderate Risk Foods

some people alpha-gal syndrome can tolerate these but they should be used with caution

Dairy (1) (2)

10-20%  (1) of people with AGS react to milk and dairy products.

  • As alpha-gal seems to be concentrated in animal fat, high-fat dairy products are the most likely to trigger reactions.
  • Some people need to stop eating ice cream but can keep eating other dairy products.
  • Other high-fat dairy products that tend to be problematic include butter and ghee.
  • Some people can tolerate cheese that is not made with rennet, especially low-fat cheeses.
  • Cream contains more alpha-gal than milk, but many people who react to higher-fat dairy products tolerate both.
  • Whey protein powder, a concentrated form of milk protein, can trigger reactions in some people who tolerate other dairy products. Look for it in protein powders, protein bars, and supplements.
  • Casein is another dairy product to look out for.
  • See the Wikipedia list of dairy products to see which other foods are dairy products.
  • The Milk Allergy Avoidance List includes a long list of dairy products, as well as dairy byproducts.
  • Check labels. Milk is a Big 8 allergen and must be declared on ingredient lists.
  • Learn the difference between “non-dairy” vs “dairy-free.”
  • Beware of ingredients in non-dairy products which may also contain alpha-gal, including whey (particularly problematic for some people), casein, vitamin D3 (from lanolin), and carrageenan.
  • Some people who don’t tolerate dairy products also react to dairy byproducts in foods, drugs, and other products.

 

 

Rennet 

An unknown percentage with AGS tolerate cheese and other dairy products that are not made with rennet.

  • Rennet is a complex set of enzymes produced in the stomachs of ruminant mammals that is sometimes used in foods, especially cheese.
  • Some people with AGS can eat dairy products, as long as they don’t contain rennet from mammals, such as calf rennet.
  • Parmesan contains mammalian rennet.
  • Some other cheeses, especially hard cheeses, also contain mammalian rennet.
  • Some packaged macaroni and cheese contains mammalian rennet.
  • Check ingredient lists on labels for rennet, but keep in mind that names of ingredients can be confusing.
  • Mammalian rennet can be listed as “enzymes” or “traditional rennet” on a cheese’s ingredient list.
  • Some rennets are derived from microbes. These may be listed as “vegetable rennet.”
  • Look for cheeses labeled “vegetarian.”
  • Rennin (also called chymosin) and lipase, which are also used to make cheese, also come from mammals.
  • Find cheeses that don’t contain rennet on the Vegetatio list of vegetarian cheeses.
  • Read Bad News: These 11 Cheeses Aren’t Always Vegetarian for a list of some, but not all, cheeses that do contain rennet.
  • See The Definitive Guide to Vegetarian Cheese for more info about both cheeses with and without rennet.
  • Is Cheese Vegetarian? is a quick guide to finding information about rennet on cheese labels.
  • Junket, a dessert more popular in previous centuries, also contains rennet.

 

We do not routinely include avoidance of dairy products as part of primary avoidance, as 80-90% of patients with AG do note react to milk or cheese. However, published evidence and expert opinion articles indicate that full avoidance of dairy products perhaps should be recommended in patients already avoiding mammalian meat without adequate control of symptoms (1).

Scott Commins, MD, PhD

University of North Carolina

The argument about a dairy-free diet changes completely if consumption of α-Gal–containing products can contribute to inflammation without giving rise to allergic symptoms. Before the recognition of IgE to α-Gal, the cardiovascular group in Cambridge reported that patients with triple vessel coronary artery disease had a distinct pattern of IgG and IgD specific for α-Gal.46 In 2018, we reported that there was significantly worse coronary artery disease in patients who had IgE to α-Gal.47 That study needs confirmation, but it implies that the risk related to IgE to α-Gal is not restricted to subjects who have allergic reactions. If it is true that patients with IgE to α-Gal have an increased risk of atherosclerosis even if they do not have allergic symptoms there are 2 groups of subjects who may need to be advised to go dairy free as well as avoid red meat: First, patients whose symptoms are “controlled” by avoiding red meat and second, subjects who have IgE to α-Gal but have not recognized symptoms related to red meat. The evidence at present is not strong enough to make this as a recommendation, but clearly it is an area that needs more research. (2)

Thomas Platts-Mills, et al.

University of Virginia

 Gelatin (1) (2)

Fewer than 10% of people with AGS react to gelatin in foods (1). Exposure to gelatin can be oral, as with medications in capsules and foods, or parenteral (not oral), as with vaccines and medications delivered through an IV. Here we deal ONLY with gelatin taken orally. Even people who tolerate oral gelatin, such as foods, supplements, and some medications, may experience severe and sudden-onset symptoms, including anaphylaxis, when medical products containing gelatin are injected or administered through an IV.

  • Fewer of us react to gelatin in foods than to dairy, but for some of us, our reactions to gelatin are worse than our dairy reactions.
  • Some, but not all, foods that contain gelatin include:
    • Candies, like gummy candies  and jelly beans
    • Gummy vitamins and supplements                 
    • Jello
    • Marshmallows
    • Icing
    • Yogurt 
    • Poptarts
    • Pastries
    • Ice cream
    • Dips
    • Glazes
    • Soups and stock
    • Mayonnaise
    • Food thickeners
    • Sausage coatings
  • Many wines and juices are clarified with gelatin.
  • Many personal care products contain gelatin.
  • Many medications and supplements contain gelatin, especially those in capsules. Seek the advice of your doctor about whether you should stop taking any supplements or medications.
  • For most medications, there are alternatives that do not contain mammalian-derived ingredients like gelatin.

 

Reactivity to gelatin is not uncommon among patients with AGS; however most patients tolerate the smaller exposures of everyday life. (1)

Scott Commins, MD, PhD

University of North Carolina

Carrageenan (1).

At least 1-2% of people with AGS report reacting to carrageenan (1). Many of us think the actual number is much higher and that the small number reported in the literature is due to patients failing to connect their reactions to carrageenan and reporting them as dairy-related. For example, multiple reports of reactions to the Dairy Queen blizzard have been attributed to the blizzard’s dairy content, but blizzards also contain carrageenan.

  • Carrageenans are a family of linear sulfated polysaccharides that are extracted from red edible seaweeds. They are widely used in the food industry, for their gelling, thickening, and stabilizing properties
  • Although carrageenans are not derived from mammals, they contain alpha-gal (4). 
  • There isn’t much in the literature about carrageenan reactions in people with AGS, but many of us react to carrageenans, and our reactions can be severe.
  • Carrageenans are widely used in the food industry as:
    • Ingredients, for their gelling, thickening and stabilizing properties
    • Processing agents used in the clarification of beer, and juice
    • Coating materials sprayed on cut organic fruit
    • Water retention agents applied to fish prior to processing
    • Functional agents in the production of cheese
    • Clarifiers and heat stabilizers in wine
  • Other foods that can contain carrageenan include, but are not limited to:
  • Personal care products, like toothpaste
  • Household cleaning products
  • Textiles

 Carrageenan is also found in personal care products, like toothpaste.

As with gelatin, carrageenan in medical products has a greater potential to cause serious reactions and needs to be considered separately.

Although carrageenan is known to contain alpha-gal epitopes, clinical experience suggests the risk of reactions appears to be quite lowand is likely pertinent to 1-2% of patients (1).

Scott Commins, MD, PhD

University of North Carolina

Cross-Contamination

Many people with AGS react to cross-contaminated food

Examples include chicken cooked on a grill used to grill red meat or chicken fried in fry oil also used to fry steak.

Low and Unknown Risk Foods

mammalian byproducts and other trace exposures

A small percentage of people who are highly reactive to alpha-gal cannot tolerate mammalian byproducts, sometimes including dairy byproducts (1).

A wide variety of foods that contain mammalian byproducts, including many processed foods.

Again, mammalian byproducts in drugs and other medical products pose a greater risk of causing serious reactions and need to be considered separately.

 

Fumes

10-15% 0f people with AGS report reacting to airborne particles of alpha-gal in:
  • Suspended fat droplets in smoke or fumes from cooking meat, especially from grills, barbeques, and sometimes frying meat.
  • Fumes cooking milk or dairy products
  • Powdered dairy products, like baby formula or cheese-flavored snack items
  • Pet dander
  • Emissions from mammals and mammalian waste
  • Dryer sheets, many of which contain lanolin
  • Candles which can contain tallow or stearic acid from mammals
  • Other sources of airborne alpha-gal like:
    • candles (often made from animal fat)
    • aerosolized gelatin from cooking Jello or warm Poptarts
    • deodorants and other personal care product
    • plug-in air fresheners
    • perfumes and scents, including some scented garbage bags
    • dust from drywall containing mammalian byproducts
Symptoms they report include (but are not limited to):
  • Itching or tingling
  • A runny nose
  • Hives, rash or flushing
  • Angioedema (swelling)
  • Nausea or other GI issues
  • A tingling throat
  • Breathing issues like coughing, wheezing, shortness of breath, airway issues
  • Dizziness
  • Changes in blood pressure or heart rate
  • Brain fog or confusion
  • A sense of impending doom
  • Lightheadedness
  • Loss of Consciousness
  • Other symptoms of anaphylaxis
Reactions to airborne alpha-gal often start within minutes of exposure, progress quickly, and can be life-threatening.
  • If you experience ANY airborne reactions, remove yourself immediately from the source of exposure!
  • For some people with AGS, fume reactions are the most dangerous reactions that they experience, leading rapidly to anaphylaxis, airway issues, and/or unconsciousness.
  • Until you know whether you react to airborne alpha-gal, exercise extreme caution around possible sources exposure, especially barbecues and other cooking meat.
Managing airborne reactions:
  • Remove yourself immediately from the source of exposure!
  • Wash your hands and face as soon as possible.
  • Seek the advice of your doctor about how to cope with future exposures, including what medications to take.
  • Work with your doctor to develop a Food Allergy and Anaphylaxis Emergency Care Plan.
  • Avoid situations where you might be exposed to airborne alpha-gal particles, such as barbecues and restaurants that grill meat.
  • For situations in which you may not be able to avoid exposure to airborne particles of alpha-gal, such as airplanes, consider buying an N99 mask. Cambridge masks are a popular brand.
  • Coming soon: Living with Airborne Reactions

Patients do report  symptoms with exposure to fumes from mammalian meats/fats being cooked; however no blinded challenges have been published to definitively document the airborne (droplet) route of exposure. Interestingly, experience suggests fumes may pose a more potent risk to reactive patients than moderate levels of pet dander exposure. (1)

Scott Commins, MD, PhD

University of North Carolina

Drugs and Other Medical Products

Virtually everyone with AGS reacts to Cetuximab

Even people who do not react when they eat mammalian meat and are otherwise asymptomatic, but who test positive for alpha-gal IgE, react to the cancer drug cetuximab. Sometimes these reactions are fatal within minutes of administration.

Other drugs and other medical products pose a risk to an unknown percentage of people with AGS. These include:

  • Infliximab, pancreatic replacement enzymes, heparin, vaginal capsules, and many other perioperative and prescription medications
  • OTC medications that contain mammalian-derived ingredients, including inactive ingredients, such as gelatin capsules and magnesium stearate
  • Many medical products and devices, including (but not limited to) some bioprosthetic heart valves, antivenoms (such as CroFab), catgut sutures, topicals, adhesives, and plasma volume substitutes
  • Many vaccines with mammalian-derived ingredients, especially those with gelatin in them, such as MMR and Zostavax

Personal Care and Household Products

Personal care products, such as some:
  • Products containing lanolin
  • Personal care products with mammalian byproducts or carrageenan in them, including some:
    • Lotions
    • Shampoos
    • Conditioners
    • Toothpaste
    • Deodorant
    • Make-up
    • Feminine care products
    • Lubricants
Household and cleaning products, such as some:
  • Air fresheners
  • Candles
  • Laundry detergents
  • Laundry sheets
  • Toilet paper
Other types of exposure, including:
  • Pet saliva and dander
  • Exposure to farm animals and their waste
  • Some people with AGS report reactions to semen when their partners have eaten mammalian meat within the 48 hours prior to sexual activity.

Pets and Farm Animals

Pets

If you suspect that your pet may be triggering alpha-gal reactions, try the following:
  • Stop sleeping with your pet. Move your pet’s bed out of the bedroom. This is important for tick avoidance as well.
  • Don’t let your pet lick you. Pet saliva causes more people to react than pet dander.
  • If your pet does lick you, wash with soap and water right away.
  • Pet dander can trigger airborne reactions. Take note of any airborne reactions to pet dander.
  • If pet dander bothers you, consider buying a HEPA to put next to your pets sleeping area.
  • If you continue to react after contact with your pet, try washing your hands after you pet them.
  • Switch your pet’s food to a brand that contains fish or chicken, instead of mammal. Many people find that this helps the most.
  • Switch to vegan grooming supplies.
  • Unfortunately, some people find that they need to find new homes for their pets after they develop AGS, but this is uncommon.

Farm Animals

Determining Your Personal Level of Tolerance

Step 7: Still Reacting? What Now?!
  • Some people with AGS react to micrograms of alpha-gal in foods, medications, personal care and household products.
  • With your doctor’s approval and guidance, try limiting your exposure to foods, medications, personal care and  household products with mammalian-derived ingredients.
  • Do not stop taking medications without your doctor’s approval.
  • See the Medications section of this website (coming soon) to learn about  how to find medications without mammalian ingredients.
  • This can be a daunting task, as there are hidden mammalian ingredients with strange names in many medications and foods.
  • Even unexpected products, like ketchup, nondairy creamers, wine and beer, lotions, toothpaste, toilet paper, and dryer sheets can contain mammalian byproducts.
  • Our Guide for the Highly Reactive (coming soon), can help you with some ideas for how to approach this.
  • Consider joining the Facebook Alpha Gal Support Nonpublic group, where there are lots of highly reactive people who can share their experiences.

People with AGS Speak about Their Experiences

Mine started out as gastro issues. Bloating, cramps, diarrhea and vomiting. That was after initial tick bite. A few months later I got into chiggers and started getting full blown anaphylaxis to include those symptoms plus drop in BP, hives, swelling, passing out, anxiety.

Julie Smith LeSueur

I already had alpha-gal syndrome and could not handle beef, but I could handle dairy. I used to eat Cheez-its and Cheetos all the time. They made great movie snacks! I had no problems with dairy then, that I know of, other than inflammation. Then, I was bitten by more ticks. Less than a month later, I had anaphylaxis from a snack at work one night. Just a handful of Cheez-its caused anaphylaxis within minutes. Shortness of breath, full body hives, migraine, heart pounding, drop in blood pressure, facial flushing, hot sweats and cold chills, diarrhea, and vomiting all simultaneously.

Crystal J. Norton

Carrageenan causes a more immediate reaction than typical for me. It causes abdominal bloating and GI issues lasting at least two days. I become very fatigued, my body becomes flushed, I get hives, and get foggy in the mind. It’s one of the worst reactions I’ve had and it’s in vegan sour cream and ice cream!

Ashley Magruder

I go into anaphylaxis if I ingest mammal meats. I end up on the toilet for 2 days if I ingest dairy.
I end up with severe headaches and body pains if I’m ingesting medications that contain mammal. If I’m around fumes of mammal being cooked, I end up w
ith nausea, diarrhea, swollen face and hands, indigestion, headaches, red eyes that are also swollen, and severe body pains. Thankfully I only end up with red and burning skin if I touch mammal meats.

Amber Roberts

 I already had alpha-gal syndrome and could not handle beef, but I could handle dairy. I used to eat Cheez-its and Cheetos all the time. They made great movie snacks! I had no problems with dairy then, that I know of, other than inflammation. Then, I was bitten by more ticks. Less than a month later, I had anaphylaxis from a snack at work one night. Just a handful of Cheez-its caused anaphylaxis within minutes. Shortness of breath, full body hives, migraine, heart pounding, drop in blood pressure, facial flushing, hot sweats and cold chills, diarrhea, and vomiting all simultaneously.

Crystal J. Norton

Before I was diagnosed, sometimes I would eat a hamburger and nothing would happen.
Sometimes I would eat a hamburger and just get cramps/bloating/diarrhea, occasionally vomiting.
Sometimes I would eat a hamburger and my throat would close and I would have hives the size of dinner plates.

It  was always Russian roulette. It could be the prepared exactly the same. It could be from the same cow. The only thing different is how I react to it.

Megan Thomas

 I react to the dog dander. Gives me esophageal spasms.

Amber Roberts

For more information about tolerance levels, read Darcie Clements excellent Adapting to AGS Part I: Understanding Tolerance Levels.