People with Alpha-gal Syndrome Tell Their Stories
Testimonies: a Project of Annia Nelson Contreras
Why speak out?
When writing your testimony, not only are you telling your story and allowing your very own voice to be heard, you are helping, informing and inspiring others to share theirs as well.
Together we can spread awareness and tell our stories from our own perspective. We can share in-depth and break down subtle details within our journey so others may learn from our experiences and struggles. Our testimonies can bring hope to someone who may not have any.
Testimonies help us come together and relate. They may help us feel less alone in dealing with alpha gal syndrome.
Let your voice be heard. Tell your story!
Read our testimonies
I encourage you to come join us by reading the many testimonies of people who deal with alpha-gal every day of their lives. You may be their only support.
Gain an understanding of what people feel and go through while living with this syndrome. Who knows, you may very well be reading about a family member, friend or even a patient. There are more and more people being diagnosed with this every day.
Right here is where you begin. A Facebook Page and Group have been created to WRITE, READ AND SHARE your thoughts, concerns, and experience in living with alpha-gal syndrome.
I truly pray this may help someone.
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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