Symptoms

A Guide to Understanding Alpha-gal Syndrome’s Paradigm-shifting Presentation

Symptoms Can Include:                What Are Symptoms of AGS like?

  • Itching
  • Hives (93%), flushing
  • Angioedema (swelling)
  • Gastrointestinal symptoms (>60%)
  • Anaphylaxis (60%)
  • Cardiovascular symptoms (30-40%)
  • Difficulty breathing
  • Low blood pressure
  • A weak and rapid pulse
  • Dizziness
  • Fainting
  • Shock
  • Arthritis
  • Gynecological symptoms
  • AGS allergic reactions are usually delayed, unlike most allergies. Symptoms typically begin two-to-ten hours after meat or other mammalian products are consumed.
  • Reactions from eating some mammalian products, like pork kidneys, may occur more rapidly.
  • Reactions to drugs, vaccines, and other medical products, depending on how they are administered, may also occur more rapidly, as may topical reactions to products with alpha-gal in them, like lotions and adhesives in bandages.
  • Reactions to airborne alpha-gal, such as meat fumes, can occur within minutes.
  • Compared to typical allergies, AGS reactions are extremely variable, both from person to person and even with the same person from exposure to exposure.
  • Not all exposures to alpha-gal result in a reaction.
  • This variability is due, in part, to the important role that co-factors play in AGS.
  • Co-factors are conditions that can make allergic reactions worse. They include exercise, the consumption of alcohol, the use of nonsteroidal anti-inflammatory drugs (NSAIDS), illness, menstruation, and the consumption of spicy foods.

    Midnight Anaphylaxis

    “Any time you see a patient who is coming in saying they are waking up in the middle of the night with an allergic reaction, you better prove that it is not this.”

    Dr. Erin McGintee

    “About 90% of the patients present with skin symptoms. Most often it will start with the palms and the soles of the feet or the ears. They will start with intense itching, and it will progress with hives and/or flushing that can be localized or generalized.  The next most common symptom that we see is actually gastrointestinal symptoms. It is very common for patients to complain of severe abdominal pain, cramping, nausea, vomiting, diarrhea–you see these in at least 60% of the patients. Cardiovascular symptoms are not uncommon. 30-40% of the patients will report feeling light-headed and I definitely have a good number of patients who lose consciousness… About 30-40% of the patients will report respiratory symptoms either involving the throat or involving the chest.”

    Dr. Erin McGintee

    Anaphylaxis

    • About 60% of people with AGS have anaphylactic reactions.
    • Anaphylaxis is a serious reaction that can be fatal. 
    • Anaphylaxis is a medical emergency and requires immediate medical care!
    • Symptoms of anaphylaxis can include one or more of the following symptoms:
      • hives
      • low blood pressure
      • difficulty breathing: shortness of breath, wheezing
      • chest tightness
      • a weak and rapid pulse
      • gastrointestinal symptoms
      • dizziness and lightheadedness
      • fainting
      • shock.
    • Even if you have only one of these symptoms, you could be experiencing anaphylaxis. Ask your doctor! 
    • Due to the delayed onset of AGS reactions, people with AGS often experience anaphylaxis in the middle of the night, after they have gone to bed.

    We had a cookout. I ate an average piece of steak. That night I woke up around 3:30 am in disarray. Palms blood red, itchy beyond words could describe. Half dollar hives appeared EVERYWHERE from my thighs to my belly button. Internally, it felt like a ping pong ball of fire was bouncing around my chest. Throat was tight. For an entire week after, my digestion system was beyond uncomfortable in ways I couldn’t tastefully explain. Was very ill feeling for many days

    Christopher Scott

    “I definitely have a good percentage of patients who lose consciousness.”

    Dr. Erin McGintee

    Gastrointestinal Symptoms

    • Up to 20% of people with AGS have GI symptoms only.
    •  Over 60% of people with AGS experience gastrointestinal symptoms, including one or more of the following:
      • nausea
      • diarrhea
      • vomiting
      • abdominal cramping
      • abdominal pain
    • The most common gastrointestinal symptom of AGS is cramping abdominal pain.
    • Some people with AGS are misdiagnosed with IBS or other gastrointestinal disorders.

     

    “In addition to the classic allergy symptoms, some of our patients report significant gastrointestinal distress or gynecological symptoms. These symptoms can take the form of abdominal cramping and pain, heartburn, diarrhea, nausea or vomiting and in some cases uterine cramping with spotting. It is not uncommon for a patient who has anaphylaxis to lose consciousness while moving their bowels.  Some patients have reactions that are characterized almost entirely of GI or gynecological symptoms while others may not experience these types of symptoms at all.”

    Scott Commins, MD, PhD

    Associate Professor of Medicine, Division of Rheumatology, Allergy and Immunology, UNC School of Medicine

    It was always the upper abdomen, to the right side. It felt like a constant burning. It would last for a couple of hours, and there was nothing I could do to alleviate the pain. I had diarrhea every day. I was tested for gallbladder issues, pancreatitis, leukemia, everything except alpha-gal syndrome. I and was eventually diagnosed w IBS. I lost 25 lbs over a period of 6 months and didn’t need to. It took 10 yrs for an accurate diagnosis.

    I have been symptom-free for 2 years since I eliminated all mammal meat, dairy, and anything else that might have a slight hint of any kind of mammal byproduct.

    Alicia Marie Tucker

    I react gastrointestinally only. When I have reactions, the pain starts under my ribs, comes in waves, ten times worse than labor pain, and I get horrible chills and back aches from the pain and shivering. It’s awful. My last reaction in April landed me in the hospital and they gave me pain meds instead of an epi.

    Lacé D.

    Abdominal cramps for hours, threw up sometimes, and four to five  days of constipation, followed by uncontrollable diarrhea. Yep, I suffered that for three years. Three years of ultrasound, X-ray and MiraLAX double dose every day. Three years of toxic hell.

    My GI doctor got bit by the tick and got it too. Only then did she call me in for the test.

    Wayne Moore

    Reactions to Airborne Particles

    Almost a third of people with alpha-gal syndrome react to alpha-gal in airborne particles, such as fumes from cooking meat or even cooking dairy products. Here are their descriptions of what it is like.

    The scariest part of this whole thing for me has been the fume (aka airborne reactions). 

    One day I was volunteering at my sons school.  I was in there for well over an hour–in and out.  They were cooking pork.
    When I left and walked to my car, nothing seemed out of place, but  after sitting down and starting to drive, I felt very odd–light headed and tingly.  I remember looking to my friend, telling her I think I am going to pass out, trying to get to the side of the road, and that is it.  She managed to put the car in park before the car went off into the woods.
    The next thing I knew, I was in the ER at Duke University.  I was admitted to the hospital and had every test in the book.  MRIs, brain scans, echos, heart tests.  An otherwise very healthy person does not just have syncopy. It was all caused by a rapid drop in my blood pressure.

     

    Tami McGraw

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