A Checklist for Newbies
If you are newly diagnosed with AGS, remember, you are one of the lucky ones. There are thousands and possibly 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.
If you are having an anaphylactic reaction now, call 911. Anaphylaxis is a medical emergency!
Step 1: Stop eating these mammalian products
- The internal organs of mammals, like liver, heart, intestines (tripe or offal), and 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.
- All other mammalian tissues, cells, and fluids, like brain, nerves, bones, skin, and blood.
- Meat broths, bouillon, stocks, and gravy
- Meat flavorings, including some “natural flavorings”
- Meat extracts
- Mammalian gut sausage casings (turkey and chicken sausages often have these). Removing them is not advised, as severe reactions may still occur from cross-contamination.
- Animal fat, like lard, tallow, and suet (often in cooked foods, such as pastries, pie crusts, tortillas, refried beans, baked beans, etc.)
- Other products containing mammalian meat or organs
Do this even if your reactions are mild. Reactions to alpha-gal are extremely variable, and your next reaction could be more serious. 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.
- See Alpha-gal Tolerance Levels for more information.
Step 2: Make an appointment with your primary care physician or an allergist to discuss AGS
- It is urgent that you do this as soon as possible, due to the severe reactions associated with AGS.
- 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. We recommend Diagnosis and management of patients with the α-Gal syndrome. Currently, the full text is not available online. You can buy the PDF or ask your local librarian for help accessing it, or just bring a copy of the abstract. Your doctor should be able to access the full text.
- 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.
- Talk to your doctor about your medications and supplements, whether they contain alpha-gal, and if they are safe for you. Many medications and other medical products contain active or inactive ingredients that are derived from mammals. Some of these contain more alpha-gal than others. Tolerance of medications that contain alpha-gal varies from patient to patient.
- Alpha-Gal (Mammalian Meat) Allergy: Implications for Pharmacists and Drug Allergies Due to IgE Sensitization to α-Gal may help your doctor understand the issues related to AGS and medications.
- 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 firstname.lastname@example.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, reading What Does a Red Meat Allergy Have to Do With Anesthesia and Perioperative Management of Alpha-Gal Syndrome? may help them.
- 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 10-30% 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, due to the severity and variability reactions to alpha-gal.
- Ask your doctor if you need a Food Allergy and Anaphylaxis Emergency Care Plan.
Step 3: Learn about epinephrine autoinjectors, like EpiPens.
- The overwhelming majority of people with AGS need to carry epinephrine autoinjectors.
- 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 and explain it. Share it 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.
- Can’t afford an epinephrine autoinjector? Get help here.
Step 4: Create an emergency kit and keep it with you at all times.
You might 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 email@example.com, 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.
Step 5: Beware of fumes and take note of any airborne reactions, which affect 10-30% of people with AGS.
People with AGS report reacting to airborne particles of alpha-gal in:
- Fumes from cooking meat, especially from grills and barbeques
- 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
- Other sources of airborne alpha-gal, like 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
- Hives, rash or flushing
- Angioedema (swelling)
- Nausea or other GI issues
- A tingling throat
- Breathing issues like coughing, wheezing, shortness of breath, airway issues
- Changes in blood pressure or heart rate
- Brain fog or confusion
- A sense of impending doom
- 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: 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.
- 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 7: 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 8: If you can, make an appointment with an allergist with expertise in AGS, even if you have to travel to see them.
Step 9: Find a local allergist who is knowledgeable about AGS.
Step 10: 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.
Step 11: 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.
- Read Alpha-gal Tolerance Levels for more information.
Step 12: Avoid additional tick bites.
- Additional tick bites can resensitize you to alpha-gal and make your reactions worse.
- See Avoiding Tick Bites
Step 13: Join the main Facebook 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