Fibromyalgia'How a Tick Bite Changed My Life': Amy’s Story with Alpha-Gal Syndrome

‘How a Tick Bite Changed My Life’: Amy’s Story with Alpha-Gal Syndrome

In March of 2021, Amy noticed she had been bitten by a Lone Star tick and says her life has never been the same since. Amy now suffers from a rare condition known as alpha-gal syndrome, which causes her to have life-threatening allergic reactions to meat and other mammal by-products. Along with her newfound allergy to most meat products, Amy says that she lives with constant food fears, and anxiety as a result of her condition. She hopes that by sharing her story, she can help shed light on this little-known condition, and show others that there is a pressing need for more research into treatments and alpha-gal safe products.

What Is Alpha-Gal Syndrome?

Alpha-gal syndrome, also known as alpha-gal allergy, is a type of food allergy to red meat and other products made from mammals. The exact molecule that causes alpha-gal syndrome is called galactose-α-1,3-galactose, which is not found in fish, reptiles, or birds.

“Everyone with Alpha-gal syndrome has different reactions, and they can vary from mild to very severe,” Amy says. “We are also all at risk for anaphylaxis, which makes this is allergy especially dangerous for those without a proper diagnosis.”

While the connection remains unclear, a seemingly large amount of alpha-gal patients develop a co-occurring disorder known as MCAS (mast cell activation syndrome). MCAS is a condition in which a person experiences repeated episodes of the symptoms of anaphylaxis. The conditions also causes people to have allergic reactions to other items, such as dairy, eggs, and other similar products.

Since alpha-gal syndrome is transmitted predominantly via ticks, avoiding tick bites is the key to prevention. Protect against tick bites by wearing long pants and long-sleeved shirts and using insect repellents when you’re in wooded, grassy areas.

What Causes Alpha-Gal Syndrome?

In the United States, as previously mentioned, alpha-gal syndrome is most commonly caused by a Lone Star tick bite. The tick bite transmits a sugar molecule called alpha-gal into the body. In most people, the bite triggers an immune response that later causes reactions to red meat, such as beef, pork, lamb, and other mammal by-products.

For Amy, the bite has caused her to have severe allergic reactions to many animal products, which has dramatically changed the way she lives her day-to-day life. “My daily life consists of a seemingly never-ending string of constant food fears and label-reading to ensure the foods I’m eating don’t contain ingredients that trigger my alpha-gal,” she said.

The Lone Star tick is found primarily in the southeastern U.S., and most people who have alpha-gal syndrome can be found in this area. While not as common, the tick can be found in the eastern and central parts of the country, like deer that carry the tick continue to migrate. Aside from the U.S., alpha-gal syndrome also has been diagnosed in Europe, Australia, and Asia, where other types of ticks carry alpha-gal molecules.

Symptoms of Alpha-Gal Syndrome

Symptoms of Alpha-Gal Syndrome“I first noticed I may have been living with alpha-gal about a year ago,” Amy explained. “Around that time, I recall being bitten by five ticks within week long period. In the following weeks, I remember feeling absolutely awful. I was in severe pain, extremely lethargic, and had many gagging and vomiting episodes when eating dinner.”

In the months since being diagnosed with alpha-gal syndrome, Amy has developed a severe allergy to a number of meat and mammal products. Specifically, Amy says she struggles primarily with foods that contain eggs, red meats, and carrageenan (a common ingredient used in meat products to help with water retention).

Unlike other allergic reactions like peanuts or shellfish which occur within minutes, for example, reactions to alpha-gal occur hours after exposure. This reaction, for most, happens about three to six hours after ingestion or exposure. Foods that trigger alpha-gal reactions include red meats like beef, pork, or lamb, organ meats, and products made from mammals such as gelatins or dairy products.

Common symptoms of alpha-gal syndrome include:

  • Hives, itching, or itchy, scaly skin (eczema)
  • Swelling of the lips, face, tongue, throat, or other body parts
  • Wheezing or shortness of breath
  • A runny nose
  • Stomach pain, diarrhea, nausea or vomiting
  • Sneezing
  • Headaches
  • A severe, potentially deadly allergic reaction that restricts breathing (anaphylaxis)

For Amy, the symptoms of her alpha-gal go deeper than simply allergies to meats and animal products. “I live with constant food fears, and as a result, I experience periods of anxiety and rapid heart rate seemingly out of nowhere,” she says. “Smell reactions are the worst for me. I dread driving past fast-food restaurants. I get dizzy, nauseous, have a very rapid heart rate, an itchy throat, and this heavy, tired feeling that I can only describe as feeling like my body is slowly filling up with concrete.”

Challenges for Alpha-Gal Patients

Doctors think the time delay between eating red meat or mammal products and developing an allergic reaction is one major reason the condition is often overlooked. A possible connection between a T-bone steak with dinner and hives at midnight may not be the most glaringly obvious answer to most people.

“One of the biggest challenges I’ve faced since being diagnosed with alpha-gal has been finding the right support,” says Amy. “I have yet to find a doctor who really ‘knows’ about Alpha-Gal allergy. One day I was told I have alpha-gal syndrome, and the next I was being sent out the door with a referral to an allergist. The scary part is, I am unsure if this allergist even understands alpha-gal.”

“Most days, alpha-gal is stressful, aggravating, and exhausting. Chicken, turkey, fish, and veggies are all there is for me. I do not eat out, as cross-contamination is far too easy to happen and could kill me,” said Amy.

It’s not just the obvious meats and mammal products that make living with alpha-gal so difficult. There are many common ingredients, foods, chemicals, and other additives that can trigger an alpha-gal reaction, some of which may be surprising.

Amy says that one of those surprising allergies is sugar. Sugar is mostly processed through a method known as bone charring. Bone char is made from the bones of cattle and is widely used in the sugar industry to help achieve a pure white color. “This makes most sugars a trigger for me.”

These challenges have made life with alpha-gal hard for Amy, but she says she’s hopeful that more people will get involved in the conversation, and that more research into potential treatments is to come.

Outlook for Alpha-Gal Patients

Living with alpha-gal can mean a lifetime of checking labels, avoiding certain foods, and struggling to find the right support from doctors. While there is no cure for alpha-gal syndrome, Amy says that living a healthy, reaction-free lifestyle is possible with the right attention to detail and a little trial and error.

“Anyone who has alpha-gal should, in my opinion, keep a very detailed food diary to narrow down the cause of your reactions,” Amy said. “It took me two weeks of fully documenting every single thing I consumed, with dates, times and amounts, even medications, to really understand what was causing my alpha-gal symptoms.”

Amy continued, saying that since alpha-gal is so uncommon, it can be pretty frustrating to find a doctor that understands your condition. “If there is anything I regret, it would be trying to rely solely on my primary care physician for answers. While it’s important to talk with your doctor about your symptoms, it’s always best to try and find someone who specializes in alpha-gal, or who works in or around the allergy field.”

Amy says that there is much more research that needs to be done surrounding alpha-gal syndrome, as she has experienced a lack of understanding among doctors she has been to. “At this point and time, with such a large amount of medical professionals still not well-versed in AG, I think the key is self-awareness. Reading and learning, documenting your symptoms and reactions in detail, and not being afraid to search online and put your doctors on the spot are all key in living with AG.”

“remember that no one will advocate more for you than yourself.”

Amy hopes that her story can help educate others on this rare condition and that it may give someone the answers they are looking for. If you or someone you know is struggling with alpha-gal, or if you believe you may have this rare syndrome, talk with your doctor about seeing an allergist who knows alpha-gal.

“Lastly,” Amy said, “remember that no one will advocate more for you than yourself.”

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11 COMMENTS
  1. When I first awoke with hives and a swollen face, I had just spent two days cleaning out my deceased mother’s poorly sealed detached garage in her wooded back yard. I took Benadryl and contacted my sister immediately to announce I had been bit by a spider or tick. I spend two months suffering from hives, severe pruritis as my PCP attempted to locate me an allergist. Waste of money and time. I googled everything and NEVER ONCE saw anything about Alpha-Gal-Syndrome. A girlfriend told me I was histamine intolerant and that eventually led me to Mast Cell Activation Syndrome/MCAS. My life has changed. Although I do not believe I have Alpha-Gal-Sydrome, I am not really sure. The MCAS made me leave red meat alone but I really am a fish and chicken person anyway. However, I did previously began eating a lot of lamb (fiancee now) and some steak. I live like Amy and have to check everything. I suffered for six months before a hint of relief came in the form of high dose (12K IUs daily) of Vitamin D3. It cleared my skin but my body thinks I have allergies and if I eat the wrong thing: cheese, soy, vinegar (which is in everything) I wake of looking like someone punched me in the face. It has been a journey. Imagine my surprise watching the evening news with Lester Holt on 7.27.23 and hearing about AGS. This is crazy when you realize the PCP and allergist only know what they know. Functional medical doctors are the truth for me now. I still take allergy meds that supposedly control the release of the mast cells. I still itch and read every label and by product label even in my hair shampoo. I 59, run, swim and love the exercise. The fatigue, running nose, hives, and my goodness, the ITCHING has at times been unbearable. I pray and still believe God will heal me and I research, eat clean-ER now. I am not the same. This has changed my life. Thank you, Amy for your story!

  2. I had no idea about this syndrome. I am outdoors a lot and it’s good to know about these things and what causes them. Good info. Thank you. I sorry for the person that has it. I hope you can find relief from the symptoms.

    • THIS is why I advocate awareness- I’m the Amy- anyone can end up in Alpha-Gal allergy hell. Ticks are out year ’round, and I contracted Lyme this past December 28th. Alpha-Gal allergy is forever, there is no cure. Please protect yourself and loved ones! Pets as well! There needs to be more pressure on the makers of flea and tick products for animals. We need products that work! I am 99% positive the ticks that bit me came off the dog that sleeps at my feet in the middle of the night. The small seed ticks, smaller than the size of a pen tip is what got me ( I will post a pic) DEET, long sleeved shirt/pants with rubber bands to seal your wrists. Permethrin etc. I have been making tick tubes which ‘seemed’ to work but I was bitten on month 5 of them being placed. (I now change them at month 4) I will post the video on how to make them. Protect yourself, protect yourself and protect yourself! Ticks are an epidemic issue, that Zee Map link above shows reported cases of AG (I’m sure the number is double what it shows as not everyone has internet etc) The sad and scary cases are the young children that have AG. I cannot imagine the fear of sending a young child to school, knowing they cannot eat what their peers eat and have to carry an Epi-Pen. Covid has been fearful as well- AG patients are allergic to most of the treatments, even Vitamin D. Mammal is in just about everything, from toothpaste, shampoo, lotions, foods and medications. **Sorry- I’m the girl who cannot shut up about how important it is to protect yourself from tick bites. (I created the Tick-borne/Alpha-Gal Allergy group here and will post the tick tube video etc- if anyone is interested in joining)

  3. Very well written and such a great story and topic for all to read. I hope that people will understand just how horrible living with AG is, and jut show hard it is to understand every aspect of daily life when you have it. Hopefully this will trigger some people to look into the possibility that the symptoms they are experiencing may be AG related!

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