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The Ugly Truth Behind Alpha-gal Syndrome: A Personal Story

Alpha-gal interview

What is alpha-gal syndrome and why is everyone talking about it? Despite being known for years, alpha-gal syndrome (AGS) has recently garnered significant attention, thanks to the CDC and various media outlets. Also referred to as alpha-gal allergy, red meat allergy, and tick bite meat allergy, AGS is a serious condition caused by an allergy to the alpha-gal (galactose-α-1,3-galactose) sugar molecule. This condition is often linked to tick bites, particularly those of the lone star tick found in the United States. Individuals afflicted with AGS can experience serious allergic reactions upon consuming red meat or other products containing alpha-gal. Given the substantial amount of people affected by AGS, it demands greater attention. However, media coverage only scratches the surface, leaving many unaware of the hardships and emotional toll associated with this allergic condition. We aim to provide deeper insight into AGS, sharing with you a real-life story to showcase the profound impact it can have.

Our team interviewed H.V., an AGS patient from a small rural town in Missouri. Through her personal story, we get to witness the challenges she confronts while living with this condition. H.V. has been surrounded and bitten by ticks countless times throughout her life but never had an issue until shortly after her 30th birthday. Her description of her hometown paints a picture of abundant wildlife, woodlands, national forests, and farms, rendering ticks unavoidable. She recalls instances where ticks even fell into her hair while walking under trees! In this interview, H.V. shares her long and tiring journey toward obtaining an accurate diagnosis and sheds light on the painful reality of managing this life-long allergic condition.

Can you share your journey on how you were diagnosed with alpha-gal syndrome?

“Shortly after my 30th birthday in 2003, my health began to take a dive. Within a few short years, I had Endometriosis, COPD/emphysema, Fibromyalgia, and Raynaud's Syndrome pinned to my medical chart. If all of that wasn't enough, along came a head-to-toe itch out of the blue. No explanation. My doctor told me to take Zyrtec and I have been taking it every day ever since. I can't go more than 24 hours without taking it or the intense all-over itch comes back.

But this itch was just the beginning. As time went on I began to notice weird and unexplained things happening. I started reacting to dairy, specifically milk and ice cream, with excruciating stomach aches. Anything that contained jalapenos gave me migraines. I started getting terrible stomach aches from ibuprofen. Some prescriptions caused side effects that weren't even listed as possible side effects. And my list of prescription allergies began to grow.

Fast forward to Nov. 2017. I got 2 vaccines and, within 2 weeks, I began reacting to everything! Everything I ate, every prescription I took (including an inhaler), even plain water. I had reactions on and off all day every day. I felt like I couldn't breathe. I wasn't sleeping well. Every time I dozed off, I woke up. My stomach was bloated and hurt constantly. Strong smells like perfume, candles, cleaners, and even gasoline gave me headaches and made me feel ill. I was exhausted. I had constant inflammation and pain throughout my entire body. I was a mess!

In 2018, I spent most of the year bouncing from one doctor to another. My diet consisted of maybe 10 different foods. I ate the same thing for dinner night after night (salmon, rice, and a veggie). I went to the ER several times. They treated me like I was crazy and dismissed it as either anxiety and panic attacks or COPD related. I tried to explain that when you feel like you can't breathe, you're going to have anxiety and panic attacks. But that's not how they saw it. I was also not convinced it was COPD related. I saw several specialists, but I still didn't feel like the issue at hand had been found. After a sleep study, I was diagnosed with obstructive sleep apnea. The CPAP helped some with sleep, but I was still waking up in the middle of the night.

I had symptoms of a heart attack in May 2018, which included elevated troponin levels. I spent 3 days in the hospital. They found nothing wrong with my heart after doing all of their testing. They gave me shots in my stomach to prevent blood clots. I had a large bruise on my stomach for a month. (I might add that I bruise very easily now and bruises are visible for weeks, sometimes months.)

I had allergy testing done and tested positive for several foods (eggs, milk, peanuts, wheat, cashews, beef, chicken, pork, buckwheat, carrots, and tomatoes). I avoided those foods and still reacted to other foods. I went back to the allergist to get more testing done and was told it might just be intolerance to some foods and they refused to do any more testing.

In Oct. 2019, my primary care NP at that time, who just happened to have Alpha Gal Syndrome herself, tested me for it. I had no idea what Alpha Gal Syndrome was, but it came back positive. I was told to avoid mammal meat, dairy, and by-products and take a vegan Vitamin D. Sounds easy enough. But it's definitely not been that easy. I have had to research and learn everything about Alpha Gal Syndrome on my own. It has been a very long and painful journey. No one should have to suffer like I have because it is simply inhumane.”

What are the challenges that you’re facing with AGS? How has it affected your daily life?

H.V. reveals that AGS has profoundly impacted every aspect of her daily life, including financial strain, social interactions, mental well-being, physical health, and even her intimate life. Unfortunately, many treatments and specialists crucial to her condition are not covered by her insurance. The cost disparity between vegan foods, vitamins, supplements, personal care items, and cleaning products in comparison to their non-vegan alternatives is striking, often amounting to 2-3 times the expense.

In terms of her dietary choices, H.V. is afraid to eat anything that she hasn’t prepared herself. She has stopped dining out altogether and has to bring her own food to family gatherings.

H.V. expressed that having AGS is a challenging reality to accept, given its lack of a definitive cure. Her doctors made her feel crazy and hopeless, which led her to find comfort in alcohol. Although her alcohol use has declined, she still goes to counseling regularly to help with her mental health. The constant need to meticulously scrutinize product labels also cause her to feel mentally exhausted.

In addition to H.V.'s mental health, her physical health has also taken a toll. The array of food restrictions has led to deficiencies in vital nutrients, necessitating the use of supplements.

Alpha-gal interview

She constantly has to visit her doctor for different issues, and certain labs, such as vitamin B12, vitamin D, and cholesterol levels have to be obtained periodically. Despite how careful she is, she still experiences reactions, such as cough, phlegm, stomach pains, and even waking up in the middle of the night with difficulty breathing. H.V. also experiences challenges in her intimate life, impacting her interactions with her husband due to heightened sensitivity to bodily fluids. She has incorporated the use of vegan condoms as a measure to mitigate adverse effects.

Although H.V. is allergic to mammal products, she is a huge animal lover. She shares her life with an affectionate dog that loves to kiss and sleep with her, but due to her condition, she had to change their routine. Similarly, she has to be cautious with other people's pets and love them from a distance.

Do you have any difficulties finding animal-free medications?

H.V. responds, “Mammal by-products are in so many everyday things we buy and don't even think about. I have to check things that are used at the dentist and when having surgical procedures. I've brought my own vegan lubricant for a routine pelvic exam. It would be nice if ‘mammal’ was included in the list of top allergens and added to labels like milk, soy, nuts, etc. Wishful thinking? I'm hoping it will happen someday soon. But having access to Veganmed has been a huge help. I'm able to search the site for OTC items and ask for prescriptions to be checked. It might take a few tries of having the doctor send a prescription to the pharmacy before I get one that's safe, but it's well worth it. I do wish there were more vegan OTC options available though.”

If you can give one piece of advice to someone living with AGS, what would it be?

H.V. advises, “Keep your rescue meds with you at all times. You never know when you'll have a reaction or what kind of reaction it will be.”

Reflecting on her journey, H.V. says that she has come a long way in the past 4 years, but she's not yet where she needs to be. She hopes that her story can help others find comfort in the fact that they are not alone. While her story represents just one individual's experience, it resonates with the thousands who share similar struggles. According to a recent survey of 559 patients with AGS, 50% of respondents reported that they have experienced anaphylactic reactions to health products containing alpha-gal. We need to start taking this condition seriously and address these patients' needs. We hope that by spreading awareness of AGS, there will be more research and options for patients suffering worldwide.

As a reminder, please comment on our FDA Citizen Petition, requesting clear labeling of animal-derived ingredients in medications. Together, we can make a difference.


Disclaimer: The product and/or information provided on VeganMed is of a general nature and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not lab test the products to confirm that they are free from animal ingredients, and it is possible that the formulation and ingredients could have changed. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or product. The information provided in this post is accurate and up to date as of the date it was written. However, please note that circumstances and facts may change over time, and new information may become available that could alter the accuracy or relevance of the content. We encourage readers to verify and cross-reference any information provided here with trusted sources or consult relevant professionals for the most current and accurate updates.


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