Our Alpha Gal Story

I have always wanted a son. And then in August 2004, I was blessed with the chubbiest and happiest 8 lb. 8 oz. baby boy who, from birth, has been my spittin' image. I was elated. My dreams came true. After having already given birth to a healthy daughter five years earlier, Scott Thomas completed my life and filled my heart.

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His infancy and early childhood were not easy. He had abnormal reactions to vaccinations, in addition to allergies to anything in nature. Albuterol and nebulizers were our constant companions. We could manage his allergies with medication and caution and during his childhood his allergies were limited to being outside, pollen, grass...etc.

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My son also grew up with an insane amount of sensory processing issues, so much so that even a shadow on the wall would keep him from being able to focus on math or spelling. Food had to be spicy and he would pour black pepper over his food to the point of absurdity. He loved anything hard, fast, hot, spicy, or unusually strong. Cutting hair or nails felt like being stabbed to death with paper cuts. When he was a toddler, he wanted to be as close to the cars as possible when they were moving. This made parking lots quite a challenge. One time when he was seven, he left the leader and campers at golf camp to hike up a huge hill just to stand on a busy state highway because he wanted to feel the wind as the cars whizzed by at 65 mph. He went there because he wanted the rush of wind. He would cannonball and belly-flop into pools just to feel the slap of the water. He loved to listen to music on blast, which even was a little much for his professional musician mom. He earned the nickname "Full Time" because he was just that... full time, all the time. His childhood was large and loud.

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In November of 2019, we noticed that something was weird. There was an episode at school where he felt like he was going to pass out. Coincidentally, he had just had a massive growth spurt. He had never passed out before, and he didn't go unconscious, but it was enough to warrant a phone call to the doctor. The nurse practitioner said that sometimes young men grow so fast that they can get lightheaded. I'm obviously not a doctor, and I didn't just grow six inches in a summer, so I took them at their word. Considering there were no other major health concerns, other than the sensory ones, we chalked it up to this a full-time fifteen-year-old hormonal 6'6" fluke. 

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The following February I was looking forward to a Valentine's dinner with my husband and my mom was going to take my son to dinner at my sister's restaurant. I was over an hour away in Atlanta while he was on the south side. Out of nowhere, before he even ate, he told my mom that he felt lightheaded, super itchy, and just weird like an allergic reaction. This made no sense. It was 35 degrees outside. Nothing was blooming, the sod was dormant, and trees were frozen sticks. This was usually our easy season. My mom was very concerned and I encouraged her to go get a Benadryl if he felt that he was having an allergic reaction. They left the restaurant and he could barely walk to the car. She decided to go to the immediate care facility a quarter mile away and get him checked. They couldn't even get a blood pressure and his pulse was faint so they sent him to the emergency room. The ER doctor offered no diagnosis, no reason as to what was going on, and told us to follow up with his primary care doctor. We followed up on Monday. And again, just another adolescent boy having a fluke. Probably a hormonal imbalance.

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The COVID-19 pandemic was in full swing by the time everything came to a head. We were all home together and cooking was a daily routine. Matter of fact it was the only routine that broke up the monotony of all of us cut off from the world, stuck in a house, and praying that two weeks to flatten the curve wouldn't turn into two years. The kids loved being home and enjoying the Italian favorites that I typically cooked on special occasions. There were no more episodes and things seemed just fine.

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Then the worst night of my life happened as a mom. At 12:30 a.m., my son came into my room saying that he feels off again. I turn on the light and my son's pupils are fully dilated. I had never seen one of these episodes and here was the mother of all episodes about to rock our world. He could barely stand up. I knew that calling 911 was a more than likely choice. We tried to make our way down the stairs to the front door when he just collapsed in the foyer. My son was gasping for breath and I could not feel a pulse. The level of panic is simply indescribable and the memories of me screaming his name will bring me to tears, even today. Despite years of emergency training as a teacher, I couldn't remember what to do and I will forever be grateful to the 911 dispatcher who helped me through CPR. Waiting for the ambulance was the longest eight minutes of my life. When they arrived, he was completely unconscious, gasping for breath, and his blood pressure was barely reading at 63 over 38. We rushed to the hospital and by the time I got to him in the ER, he was surprisingly better after two shots of epinephrine, some fluids, and whatever else they gave him. By 4:30 a.m. we were headed home. He was alive, tired, and obviously allergic to something... we just didn't know what. 

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I called out sick the next day and one of my student's mom was a nurse. "Have you ever had him tested for Alpha Gal?" she asked. What the heck was that? We had been to allergists since my son was seven and no doctor had ever mentioned this condition. I have taught in public schools for years. I've seen and heard of so many conditions, diagnoses, allergies, and health situations, but I never heard of this. She continued, "It's an allergy to red meat. It comes from a tick bite." In that moment, if I'm being honest, I discounted her counsel. I had never seen a tick on him and he was barely outside, other than Benadryl-laden boy scout camp. It couldn't be whatever this Alpha Gal thing was she was talking about.

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We went to the allergist and he agreed to retest Scott for everything. That poor kid's back lit up like a Christmas decoration - red and splotchy with portions of unusually white skin. And it was all the typical things - trees, grass, pollen, mold, dust, dander, dirt, roots, weeds, flowers... pretty much anything outside. I asked the doctor about Alpha Gal and he curtly responded "That's not it. Did he have a tick on him? You never mentioned a tick bite." I responded that we never saw a tick but that given the severity of his reaction to something, I wanted the test to rule it out. The allergist patronized me, "Mom, I know that you think you understand allergies, but I can assure you this is not Alpha Gal." Even though he was a Harvard-trained physician, I still felt the need to advocate for my son. I almost lost my precious baby boy and this mama bear was going to get to the bottom of this. If we were courageous enough to mask up and walk into a doctor's office during a pandemic, then I was going to ensure that we got every test possible to rule anything and everything out or in. He acquiesced. "OK, but we know it's gonna come back negative."

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Two weeks later I got a phone call. It was absolutely NOT negative. Matter of fact, it was SOOO positive, that Scott's numbers were one of the highest numbers the practice had ever seen. We were told to immediately stop consuming anything mammal - beef, pork, dairy, lamb, goat, and including all byproducts, which include any ingredient with the prefix lact-, glyco-, propyl-, and stear-. We would follow up in three months. Meanwhile, we were sent boxes of Epipens and Auvi-Qs and under no circumstance were they not to be with him at all times.

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Since his diagnosis, we have made mistakes and had some near misses. But thankfully, he has never had another episode that threatened his life. We have learned so much about this horrible allergy and living the safe AG life has become our norm. My dream came true when I had that baby boy, and when the doctors saved him, but his dreams were torn from him when he received his diagnosis.

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This is because all my son has ever wanted to do since he was three years old was to be a chef. Even as a toddler, he didn't care about Sesame Street or Diego. He watched Iron Chef and Guy Fieri. Of all of the sports icons, rock stars, and Hollywood elite, the only person he ever wanted to meet was Guy Fieri. He would beg me to buy his cookbooks (which I did) and he would practice cooking in the kitchen (then I would practice cleaning). He was an AMAZING cook, even at a young age. At the age of eight, he entered a barbecue contest at the local fair. Grown men with their platinum smokers pulled up their rigs for the big event, while my son and his stepdad set up a tailgate tent with a small camping grill. He had a secret chicken recipe which was chicken breast marinated in coffee and chipotle served with a homemade mango barbecue sauce. Sounds weird, huh? Well, let me tell you, it is probably one of the best barbecue chicken recipes I've ever eaten and my son just came up with this all on his own. He begged me to go to the grocery store to get him ready for his barbecue contest. Three hundred dollars later, I was headed home with some of the weirdest grocery purchases I had ever made.

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I prepped him for the probable loss against the pros beside us with the most impressive smokers worth thousands of dollars. These guys were in serious business and meant serious business. Some of them had even been up all night smoking their entries for the contest. We showed up in the morning with our $89 grill, coolers filled with marinated chicken on ice, and his secret mango sauce. We were allowed to sell some of the chicken as part of the event. People would come up to us, particularly so many people recognized me as a teacher in the community, and they would be so kind to try Scott's food while they were there. In the back of their mind, they were probably planning to just be cordial and tell him it was good. After all, how good can an eight-year-old cook, really? But the reactions told a different story. People would taste his food and their eyes would widen, not only with the enjoyment of what they were eating, but also because an eight-year-old made it. The time came for the big trophy presentation. Imagine our surprise, and to the stunned faces of the pro smokers, when the eight-year-old won Best Barbecue AND Best Sauce. The pros were stunned that they were trounced by a fourth-grader. And yet here was my son, my louder-than-life son, with his trophies and his creative ideas. Matter of fact, for the remaining time they had the barbecue contest at this fair, he won three years in a row - Best Barbecue and Best Sauce. 

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I had always known that there was a calling on my son, that there was something special meant for him in this life. But that all changed when we got the call from the allergist when he was as high school sophomore. Being diagnosed with Alpha-Gal now meant that his dream of going to restaurant school was out of the question. There was absolutely no way that he could safely attend a school that would require him to handle, cook, and taste the very foods that could kill him. This triggered a massive grieving process and relentless emotional turmoil inside of him, which was also compounded by the isolation caused by the shutdown. We pursued counseling to ensure that he was able to healthfully process the feelings. As his mom, I grieved with him. And if you're a parent, you know full well that one of the hardest things we can ever do is watch our children suffer in any way knowing that there is not one ounce of that burden we can take from them. You learn to pivot when there are no choices. After all, it's not that he can't learn to cook and own a restaurant. He just couldn't specifically go to cooking school. He is now a second-semester college sophomore pursuing a finance degree - and is on the Dean's List doing so. His dream is to eventually own his own restaurant for people who suffer from horrific allergies and struggle to enjoy safe clean eating outside of the home. No cross contaminations, no processed foods. He wants to open a safe and healthy option for those with Alpha Gal, celiac, diabetes, nut allergies, and other dietary restrictions.

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We emerged from the pandemic and counseling, and learned to live a safe AG life. Throughout this process, we have learned three things. First, the world does not understand this condition, especially our medical community. Had I not trusted my student's mom's advice, I would have never thought to ask, rather demand the test for my son. The medical community needs to get on board with this because while there are just about a half million people in the world who are diagnosed (according to the CDC). But I would bet that there are just as many who are struggling and have never heard of it, or have doctors who don't know anything about it. We have to give them a break. They just came out of a pandemic with more questions than answers. They're not at fault. They can't know what they don't know. But we know. And we need to advocate for everyone. Second, Alpha Gal is different for everyone. Some AGers can eat dairy, some can't. Some are fume-reactive and some aren't. Going even further, some families will not adapt their entire family's menu to reflect a safe AG diet/environment. For us, we chose to because we felt that it was the best way to support our son. When we eat together, our food is always AG-safe. Now that he is at college, we eat regularly when he is not home, but immediately switch back to AG safe when he is. As a family, we recognize that Alpha Gal is an extremely debilitating, volatile, and isolating diagnosis that these people live with every meal of their lives, for the rest of their lives, through no fault of their own. We made the decision to not add to the negative consequences that came with this condition. Unfortunately, this is not the same for everyone. This is why we have put together this website - to empower families who are looking to make that change like we did or to support the individuals whose lives must coexist with an unwillingness to change. And finally, getting Alpha Gal is terrifying. Whether we like it or not, mammalian products are everywhere and it must be dealt with on a daily basis. But there is hope and there are foods that you can enjoy. It requires a complete reframing of perspectives, but there is every option to change the way that you eat so that you don't have to carry unnecessary anxiety and feel isolated from social events. It is possible. I can say that because we do it.

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This is our family's purpose for this website. We understand because we've been there. We can't just go out for pizza anymore. Drive-thrus are toxic. We often bring our own food to parties just so we know that we are safe. Thankfully, we know how to cook well because we have owned restaurants in the past. But even having this experience, we have tried stuff in our kitchen that went straight from stove to trash. At the same time, we have been able to make an entire Thanksgiving dinner where no one at the table knew that they were eating AG-safe food. We have found our success stories, our hope, and our ability to navigate this weird little allergy. The purpose of the Alpha Gal Kitchen and Mercantile website, our cookbooks, and our socials is to share what we do with you in the hopes that it will encourage, support, and connect those who struggled like we did when we were first hit with the diagnosis. It can be OK. You just have to make it OK.

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Thank you for becoming a part of our Alpha Gal Kitchen and Mercantile family. On behalf of my son and I, we appreciate you joining our community.

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Dana Lamb-Schaubroeck