Our Stories

People with Alpha-gal Syndrome Tell Their Stories

Hi there! My name is Annia (Anna) and I am sharing my testimony about living with Alpha-Gal.

I have to start off by saying I have dealt with some health issue or another most of my life. The biggest one was obesity. Being overweight put a strain on my body and caused many issues. I finally reached a point to where my life was at severe risk. So, I took steps and had Gastric Sleeve surgery.

All went well and I was on a road to recovery and weight loss. Sounds great right? With some weight loss came a new found energy. With that being said, one sunny afternoon in April of 2018, just six months after surgery, I decided to work on a garden in my yard. I really enjoyed the outdoors and it was a beautiful, lovely day. Later as I always do after being outside, I went in to shower off and check myself for ticks as I live in an area with a vast majority. Now I have to say I have been bitten throughout my life and nothing has ever come of it. As I was looking, I discovered one had found its way on my body and had dug in. I removed the tick as I normally would. I went about my usual business.

Within a two-week period, I worked in garden several more times and again removed two more ticks.

One evening while watching tv, I began itching on my feet and hands. I didn’t think too much into the situation. I thought to myself “well maybe you got into something while gardening” and was reacting to that. As the days went by, I began having actual hives with the itching and felt ill. Very tired, dizzy, light headed, headaches, mind fog and the hives grew bigger.

I then went to see my family Physician. First thing applied was the “elimination rule” and treatment with steroids and allergy meds. Nothing was changing and I continued to suffer. Now a year prior to all of this I had saw a segment on the news about a meat allergy due to a tick bite. At first, I thought “no that is rare and I don’t have that”. However, I was not getting any resolve with current treatment so I began researching Alpha Gal in depth. I then went to the family Physician and asked to be tested. He had never heard of it. I explained what it was and felt it was a possibility that was what I was suffering from, so he looked it up himself and had the lab look up testing and I was finally tested for Alpha Gal. I tested positive and was told to immediately stop eating mammal. I was referred to an allergist/immunologist.

I did what was asked and quit eating mammal meats. Needless to say, I continued having reactions. I began dropping weight very quickly due to the fact I could hardly eat without having reactions and with having Gastric Sleeve my stomach can only hold about a cup or less of food at a time. That is when I began my year long journey of discovering exactly how horrible and severe this syndrome can be. I began removing products and foods left and right. I basically held to the standards of Vegan. I began a vigorous medication regimen with all the side effects included but to no avail was still reacting. By this time, I had dropped 170 pounds. I continued to be tested for various other ailments and disorders which most came back negative. Finally, I was diagnosed with an immune disorder which actually causes Chronic Hives above and beyond the Alpha Gal. Since I was bitten so soon after surgery, my immune system was at a weaker point than when normal and the Alpha Gal caused my body to attack itself and continually raise my histamine levels.

My journey has not been an easy one. I have learned so much about eating, foods and the way they are made, health and the way my body works since being diagnosed. I am still on the highest dose of meds, and now I have begun taking a shot once a month for the immune issue/Chronic Hives. This shot is no joke but it gives me some relief. I have met so many wonderful people who suffer silently along side of me.  I have made it a mission to help spread awareness and information so no one has to feel alone in the fight against Alpha-Gal. God Bless.

What people are saying….

Sheila B. Beaudry states, “We all react differently, and reactions can change for the good or for the worse over time.”

Linda P says, “I find that rather than “living to eat” (which restaurant tonight?), I am “eating to live”

“I’m Dori, and food is now exhausting.”

When asked do you have pets? Do you have reactions because of them? Malin Lundén Schmid had this to say:” I have two cats. My biggest fear is that I wouldn’t be able to tolerate them anymore. Luckily, I’ve never reacted to them.”

“My name is Tereasa. I have been bitten several times over the years.”

“I’m Rene and since AG I have met and made an amazing network of friends and support around the world. From an isolated case in South Africa to a globe next work of support.”

“I’m Annia, and I have had several anaphylaxis episodes. I deal with daily hives, fatigue, fogginess, headaches, swelling, heavy chest, drop in blood pressure. I can react anywhere from 20 mins (fume reaction) up to 13 hours after exposure.”

“My name is Rene and it took 8 months and 7 freighting and deadly episodes of anaphylaxis before I was correctly diagnosed by myself. AGS is not known in South Africa and I had to create a fundraiser to pay for the costs to travel to the USA to seek medical help.”

When asked has AG impacted your social life? Kristie Downen states: “Don’t and can’t have one right now. Due to the fact I’m reacting so much to everything. So I stay at home a lot and wear a mask to help with food smells.”

Kathy Weeks McMahen states “I diagnosed myself. I had a reaction one night and wasn’t sure why. Then a week later it happened again. I was also having itchy ears, so I went to an allergy clinic. Had a scratch test that showed I was sensitive to dairy, soy, beef, oranges, and cinnamon. He didn’t mention Alpha-gal and didn’t tell me to avoid any foods. My husband was watching the news one night and they were doing a report about Alpha-gal. He ran and got me, and I said I bet that’s what I have. At first, it was just beef later I couldn’t eat anything that walked on 4 legs. I actually had my PCP complete the lab test years later just to confirm what I knew.”

“Hi there, I’m Annia. I diagnosed myself! A year prior I saw a news report about a meat allergy. It was April to Sept before I received actual testing to be diagnosed by a Doctor. My Dr.’s office knew nothing at all about AG and NEVER even heard of it. I educated his whole office/lab and they looked up how to test for it. Received results in Sept 2018. Now others can be tested there.”

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