Checklist for the Newly Diagnosed

Adjusting to Life with Alpha-gal Syndrome

If you do not have an epinephrine autoinjector and are having an anaphylactic reaction now, call 911. Anaphylaxis is a medical emergency!

Now What?!

If you are newly diagnosed with AGS, remember, you are one of the lucky ones. It’s estimated that there are millions of people around the world who have AGS and don’t know what’s wrong with them.

That said, you may be in shock. Adjusting to life with AGS can be a big change. When you first learn of your diagnosis, you may feel overwhelmed, because there is so much to figure out, or helpless,  because you don’t know how to start. You may be depressed. Hang in there, it gets easier! You are not alone; there is a whole community of people with AGS–let us help you! We know what you are going through, and we are here to support you. The following list will help you get started.

Step #1: Don't play Russian roulette: stop eating mammalian meat NOW

Many people with AGS can tolerate some mammalian products, like dairy, but virtually everyone with AGS needs to stop eating the mammalian products listed below, even if their reactions are mild. Reactions to alpha-gal are extremely variable and dependent on co-factors. Your next reaction could be more serious. As expert Dr. Sheryl van Nunen likes to say, alpha-gal syndrome is “an any time allergy, not an every time allergy.” Up tp 60% of people with AGS have anaphylactic reactions (1-4) and 30-40% of people 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 kidneys, which contain even more alpha-gal than meat. Some people who don’t even react to meat have anaphylactic reactions after eating organs.
  • 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.
  • All other mammalian tissues, cells, and fluids, like brain, nerves, bones, skin, and blood.
  • Meat broths, bouillon, stocks, and gravy
  • Meat flavorings, which are often just listed as “natural flavor”
  • Meat extracts
  • 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, and desserts added to fry oil to enhance flavor.
  • Other products containing mammalian meat or organs
  • Read labels!
  • When eating out, you must ask about the mammalian content of anything you order.  In particular, be sure to ask about gravies, sauces, stocks, and fry oil used to fry chicken, french fries, and other foods.
  • It helps to have a card with information explaining which foods and ingredients you can’t eat to share with wait staff and chefs at restaurants (link coming soon).

Be aware that avoiding these products may not be enough. Many people with AGS react to other mammalian products like rennet, milk, dairy products, and gelatin. Some also react to mammalian byproducts and/or carrageenan in food, medications, medical products, personal care and household products. There are also accounts of people reacting to flounder eggs

Step #2: Make an appointment with your primary care physician or an allergist

Alpha-gal allergic reactions are often life-threatening, so if you are newly diagnosed, you need to make an appointment with a doctor to discuss AGS and how you will manage it as soon as possible.

  • If you have already experienced anaphylactic reactions, share this when you call to make your appointment.
  • Bring information about AGS to your appointment. Many doctors are not familiar with it or have misconceptions about it. The definitive guides to the diagnosis and management of alpha-gal syndrome are:
  • Ask your doctor if they have access to Up-to-Date. If they do, recommend that they read the section on meat allergy, which is written by Scott P. Commins, MD, PhD, a leading expert. The Up-to-Date article is not as current and or as comprehensive as his paper, though.
  • Talk to your doctor about your medications and supplements, whether they contain alpha-gal, and if they are safe for you. Many medications, vaccines, and other medical products contain active or inactive ingredients that are derived from mammals. The alpha-gal content of pharmaceuticals and other medical products containing mammal-derived ingredients varies. Some need to be avoid entirely by people with AGS, while others are tolerated by some or most people with AGS.  Medical products can also contain carrageenan.
  • In addtion to the two papers above, the following papers may help your doctor understand issues related to alpha-gal in medication and medical products:
  • If your doctor needs help determining whether your medications are safe for you, they can contact the Robert Wood Johnson University Hospital Drug Information Service at njdruginfo@rwjbh.org, 732.937.8842.
  • Always seek your doctor’s advice before starting, stopping, or changing medications.
  • Ask your doctor about any precautions you may need to take should you experience a medical emergency or require hospitalization or surgery. If they are not familiar with this issue, suggest they read the above papers.
  • Talk to your doctor about airborne reactions to alpha-gal and how you should deal with them, should you experience them. Explain to your doctor that 10-15% of people with AGS react to airborne particles of AGS and that these reactions are often life-threatening.
  • Ask your doctor if you need epinephrine autoinjectors, like EpiPens, and if so, how many. The overwhelming majority of people with AGS need epinephrine autoinjectors (Scott Commins, personal communication), due to the severity and variability reactions to alpha-gal.
  • Also ask your doctor for a Food Allergy and Anaphylaxis Emergency Care Plan.

Step #3: Learn about anaphylaxis and epinephrine autoinjectors

  • Up to 60% of patients with AGS have anaphylactic reactions (1-4).
  • The overwhelming majority of people with AGS need to carry epinephrine autoinjectors (like EpiPens) (Scott Commins, personal communication).
  • There are different types of epinephrine autoinjectors. Generic epinephrine autoinjectors are substantially cheaper than EpiPens.
  • One popular brand of epinephrine autoinjector is Auvi-Q. If you qualify, you can get up to 2 free Auvi-Q dual packs (that’s four autoinjectors in total) a year, delivered to your house. Your doctor will need to call in the prescription. For details, see this website.
  • Your doctor should show you how to use your epinephrine autoinjectors when they give you your prescription.
  • Your doctor should also create an Anaphylaxis Emergency Care Plan for you that includes instructions on when to use your autoinjectors and explain it. Share the plan with your family and keep it with you.
  • As soon as you get your prescription, take it to your pharmacy to be filled. There is often a shortage of epinephrine autoinjectors. It may take time for your pharmacy to fill your prescription.
  • As soon as you have your epinephrine autoinjectors, review how to use them. Don’t wait until you have a reaction.
  • This video shows how to use different brands of epinephrine autoinjectors.
  • Keep your epinephrine autoinjectors with you at all times.
  • Educate yourself about anaphylaxis. The anaphylaxis section of the FARE website is a good place to start.
  • This video presentation about anaphylaxis and the use of epinephrine autoinjectors, featuring prominent allergist Jonathan Spergel, is packed full of information. Everyone who has anaphylactic reactions should watch it. You will feel well-informed and more confident about taking control of your reactions if you do. Click here. 
  • Can’t afford an epinephrine autoinjector? Get help here.

NEW PROTOCOLS FOR USE OF EPINEPHRINE AUTOINJECTORS DURING THE COVID-19 PANDEMIC CLICK HERE

Step #4: Create an emergency kit

Seek your physician’s advice about the contents of your own, personalized emergency kit. You might want to include:

  • However many epinephrine autoinjectors that your doctor thinks you should keep with you, in a bright, insulated bag, like this one
  • Whichever antihistamines, inhalers, steroids, and other medications your doctor recommends you keep with you
  • Your Anaphylaxis Emergency Care Plan
  • An N99 mask, if you react to airborne particles and your doctor recommends one. Many people with AGS like Cambridge Masks.
  • Your medical information
  • Your emergency contact and allergist/PCP’s contact information
  • Information about AGS in general, AGS and drug allergies, and AGS and medical care
  • The telephone number and email of the Robert Wood Johnson University Hospital Drug Information Service at njdruginfo@rwjbh.org, 732.937.8842.
  • Many people like to keep their kit in a brightly colored, well-labeled bag or backpack that will be hard to overlook in an emergency.
  • Add a tag to your bag indicating that you keep your epinephrine autoinjector in it.
  • If you expect to be in an area with ticks, include a magnifying glass, something to remove ticks with. If you choose to send any ticks send any ticks you remove to a lab to be identified and/or tested for tick-borne disease-causing pathogens, then also something to store the removed ticks in– like tape and a plastic bag.
  • In the video “My Alphal Gal Emergency Kit”, a person with AGS explains what they keep in their emergency kit and why.
  • Keep your emergency kit with you at all times! Due to the delayed nature of alpha-gal reactions, you don’t know when you might need it. 

Step #5: Beware of fumes!

Ten to fifteen percent of people with AGS report reacting to airborne particles of alpha-gal in:
  • Fumes from cooking meat, especially from grills and barbeques  (by far the most common cause of airborne reactions)
  • Fumes from cooking milk or other dairy products
  • Powdered dairy products, like baby formula and cheese-flavored snack items
  • Pet dander
  • Emissions from mammals and mammalian waste
  • Candles (often made from animal fat)
  • Fumes from dryer sheets (often contain lanolin)
  • Aerosolized gelatin (from cooking Jello or warm Poptarts)
  • Deodorants and other personal care product
  • Plug-in air fresheners
  • Perfumes and scents, including scented garbage bags, etc.
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.
  • See  Alpha-gal Tolerance Levels for more information.

Step #6: Learn about co-factors

Co-factors are conditions that can change how people respond to an allergen, lowering the threshhold at which they react. Co-factors play an important role in alpha-gal allergic reactions. For example, if you have a glass of wine with dinner, or go jogging after lunch, you are more likely to have a reaction to any alpha-gal you consumed during your meal. Some co-factors include:

  • Alcohol consumption
  • Exercise
  • The use of NSAIDs (like Advil)
  • ACE inhibitors/β-agonists
  • Illness, infection
  • Stress
  • Lack of sleep
  • Menstruation

Alcohol consumption and exercise are especially important co-factors.

Tick bites aren’t co-factors, but new tick bites can also make reactions more severe.

 

Step #7: Buy a medical information bracelet

  • Many people with AGS like Road ID, because you can put several lines of information on it.
  • Medic Alert is another option.
  • Ideas about what to include on medical alert bracelets vary from person to person. Seek your physician’s advice.
  • Information that many people share includes:
    • Alpha-gal Syndrome (mammalian allergy)
    • Allergic to mammalian products and byproducts, including heparin, gelatin-based plasma substitutes such as Gelofusin, and other medications.
    • Anaphylaxis
    • EpiPen in bag
    • ICE 555.555.5555 (your emergency contact’s phone number).
    • Medical info in wallet/bag (if you have a medical card with info in your wallet or bag).
  • Remember to add medical information to your associated online account, too.

Step #8: Enter medical information on your phone

  • Many first responders know to check for this.
  • If you have an iPhone, you can put medical information in the iPhone Health app, which comes with your phone.
  • If you have an Android phone, you can get the Medical ID app.
  • You can also create a lock screen on your phone with medical information on it.
  • Ideas about what to include on your phone vary from person to person. Seek your physician’s advice.

Step #9: See an expert

If you can, make an appointment with an allergist with expertise in AGS, even if you have to travel to see them. Dr. Scott Commins at UNC and Dr. Jeffrey Wilson or Dr. Thomas Platts-Mills at UVA are highly recommended by many patients.

Step #10: Find a local allergist

If you don’t live near an expert, find a local allergist with some knowledge of AGS. In an emergency, you may need someone local, even if you have seen an expert.  If you can’t find anyone local who is understands AGS, don’t despair: find a doctor open to learning with you. We now have two great papers about the diagnosis and management of patients with AGS (see step #2) that can quickly get any physician willing to read them up to speed.

Step #11: If you are depressed, get help.

  • Read about symptoms of depression on the WebMD website.
  • If you think you might be depressed, make an appointment with a counselor.
  • The Food Allergy Counselor Directory and Website has a list of counselors who specialize in helping people with allergies, as well as other resources. 

Step #12: Figure out your personal alpha-gal tolerance level

Learn about alpha-gal tolerance levels and figure out yours. Then make the necessary changes to your diet, medications (with the advice of a physician), and environment.

Step #13: Avoid additional tick bites and bee, wasp, and hornet stings

  • Additional tick bites can resensitize you to alpha-gal and make your reactions worse.
  • See Avoiding Tick Bites
  • Bee, wasp, and hornet stings may also lead to increased alpha-gal IgE.

Step #14: If you eat meat, try emu or ostrich

Lots of people with AGS find that emu or ostrich makes a great substitute for red meat. 

  • Emu and ostrich look and taste like beef. Many people can’t tell the difference.
  • Emu is high in iron and low in saturate fats.
  • In the U.S., many people with AGS order emu and ostrich from Amaroo Hills Farm. One of the owners of this farm has AGS, and they are careful to avoid cross-contamination. Also, their meats are top quality and served in high-end restaurants across the country. They also make excellent duck sausage.*

*Nobody associated with this website benefits in any way from endorsing AHF. 

 

 

Step #15: If you struggle to adjust to your new diet, find a nutritionist

Some people have difficulty adjusting to an AGS diet, especially if they are highly reactive, have dietary restrictions, or travel for work.

  • Ask your allergist or primary care physician to refer you to a nutritionist. If possible, find one with an understanding of AGS.

Step #16: Seek support

Join the main Facebook alpha-gal syndrome support group:

  • We can’t give you medical advice, but we can answer your questions and offer emotional support. You don’t need to go through this alone!
  • Alpha Gal Support Nonpublic Facebook group

You may also want to join regional or special interest support groups or find a local member of our Emotional Support Team to talk to about AGS and how to adapt to it. You can find both on this page.

Resources for the Newly Diagnosed

References–in development

1. van Nunen S, O’Connor K, Fernando S, Clarke L, Boyle R. THE ASSOCIATION BETWEEN IXODES HOLOCYCLUS TICK BITE REACTIONS AND RED MEAT ALLERGY: P17. Internal Medicine Journal. 2007 Nov 1;37.

2. Van Nunen SA, O’Connor KS, Clarke LR, Boyle RX, Fernando SL. An association between tick bite reactions and red meat allergy in humans. The Medical journal of Australia. 2009 May 4;190(9):510-1.

3. van Nunen S. Galactose-alpha-1, 3-galactose, mammalian meat and anaphylaxis: a world-wide phenomenon?. Current Treatment Options in Allergy. 2014 Sep 1;1(3):262-77.

4. van Nunen S. Tick-induced allergies: mammalian meat allergy, tick anaphylaxis and their significance. Asia Pacific Allergy. 2015 Jan 1;5(1):3-16.

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