When Feeling "Normal" Isn't Actually Normal

Over the past few weeks, Tick Bite Data has been quieter than usual. Several people have reached out asking about what has happened behind the scenes. The simple answer is that, while continuing to work on this project, I unexpectedly found myself navigating a medical journey of my own.

For years I lived with symptoms that were often treated individually rather than as pieces of a larger puzzle. Like many patients with chronic illnesses, I accumulated diagnoses, specialist appointments, and more questions than answers. It wasn't until recently, after my health deteriorated significantly, that I finally received confirmation of Celiac disease. Additional testing also revealed food allergies and digestive enzyme deficiencies that have dramatically changed the way I eat and live. Foods I once considered staples are now off the table, and what appears to be a simple meal often becomes an exercise in trial and error, hoping not to trigger another painful reaction.

Although my diagnosis is very different from Alpha-gal Syndrome, living with an immune-mediated condition has given me a perspective I did not have when I launched Tick Bite Data.

One question I am occasionally asked is why I started a patient research initiative instead of another allergy-focused recipe website. After all, I have spent years working as a private chef, preparing meals for individuals with complex dietary restrictions and medical conditions. The answer is simple: there are already talented people creating recipes and helping patients navigate restricted diets. I didn't want to recreate work that was already being done exceptionally well. What I couldn't find was a centralized effort to collect and analyze the experiences of people living with Alpha-gal Syndrome, identify trends across thousands of patients, and ask questions that might help guide future research.

Tick Bite Data was never created because I have Alpha-gal Syndrome. It was created because family members and close friends were all describing remarkably similar experiences despite living in different states, different countries, and receiving care from different healthcare systems. Long before Alpha-gal Syndrome became a frequent news headline, I found myself asking the same question over and over again: why were so many people telling nearly identical stories if the condition was being described so narrowly?

As the survey responses continued to grow, certain patterns became increasingly difficult to ignore. Participants consistently reported neurological symptoms such as brain fog and memory difficulties alongside gastrointestinal problems, profound fatigue, musculoskeletal pain, dizziness, rapid heart rate, hair loss, and a wide range of other symptoms that affected nearly every aspect of daily life. Patient-reported data cannot establish biological mechanisms, nor can it determine causation. However, it can identify recurring patterns that deserve closer scientific examination.

My own experience with Celiac disease has added another layer to how I interpret those patterns.

Celiac disease is an autoimmune disorder. Alpha-gal Syndrome is currently understood to be an IgE-mediated allergic condition. They are not classified as the same disease, and nothing in our survey data changes that. At the same time, living with Celiac disease has shown me how dramatically an immune-mediated response can affect the body beyond the digestive tract. My symptoms were never limited to abdominal discomfort. They included debilitating brain fog, overwhelming fatigue, body aches, joint pain, cognitive slowing, and inflammation severe enough that I often struggled to recognize the person I had become.

One lesson from this experience has stayed with me more than any laboratory result or diagnosis: we become remarkably good at adapting to symptoms when they persist long enough.

Looking back, I cannot remember a time when my body didn't hurt. For more than three decades, body aches, fatigue, brain fog, gastrointestinal issues, and food reactions were simply part of everyday life. Because they were always there, they gradually became my normal. I learned to work through the pain, compensate for the cognitive fog, and convince myself that everyone probably felt this way to some degree. When repeated medical evaluations failed to provide a unifying explanation, it became easy to accept that perhaps this was simply who I was. If the doctors couldn't find anything wrong, then I must be healthy.

I wasn't.

After removing the foods my body could no longer tolerate, something happened that I never expected. About a week ago, I woke up without pain. It wasn't a dramatic moment or an overnight cure, but it was the first morning I can remember where my body didn't ache. For the first time in my adult life, I experienced what "normal" was supposed to feel like.

That realization was both encouraging and heartbreaking. Encouraging because I finally understood that the symptoms I had lived with for decades were not simply part of my personality or something I had to endure forever. Heartbreaking because I couldn't help but wonder what might have been different had those pieces been connected years earlier. There is still a long road ahead as my body heals from damage that accumulated over many years, but for the first time I know that healing is possible.

That experience fundamentally changed the way I think about patient-reported data.

Many individuals living with Alpha-gal Syndrome describe a remarkably similar journey. They spend months or years searching for answers before eventually identifying mammalian products, hidden ingredients, medications, personal care products, or cross-contamination as the source of ongoing reactions. Once those exposures are recognized and reduced, many report improvements they hadn't realized were possible because they had adapted to feeling unwell for so long.

This is not evidence that Celiac disease and Alpha-gal Syndrome are the same condition. They are not. Nor does it prove that Alpha-gal Syndrome is an autoimmune disease. However, it does raise an important question: how many patients, regardless of diagnosis, gradually accept chronic symptoms as "normal" simply because they have never experienced anything else?

Perhaps one of the greatest challenges in healthcare is not only developing better diagnostics, but also strengthening communication between patients and clinicians. Most people cannot afford years of specialist appointments, repeated testing, multiple opinions, or treatments that may or may not address the underlying problem. Patients know when something feels wrong, even if they don't yet have the diagnosis to explain it. Learning to listen to our bodies while continuing to pursue evidence-based answers may be one of the most important lessons chronic illness can teach us.

This perspective has strengthened, rather than changed, the mission of Tick Bite Data. Our goal has never been to prove a predetermined theory or challenge established science for the sake of controversy. Instead, our goal is to collect high-quality patient-reported information, identify recurring trends, and present those findings in a way that encourages meaningful scientific discussion. Every survey response represents a lived experience, and when thousands of people independently report similar challenges, those observations deserve thoughtful consideration.

The report many of you have been waiting for is nearing completion. It has taken longer than anticipated because life sometimes has a way of interrupting even the best intentions. Between physician appointments, diagnostic testing, and days when my own symptoms made it difficult to concentrate, progress slowed. Nevertheless, the work continued, and I believe the additional time has strengthened the final product.

When it is released, the report will examine many of the themes that participants have consistently raised, including neurological symptoms, gastrointestinal involvement, hair loss, quality of life, financial burden, cross-contamination, musculoskeletal symptoms, and other emerging trends identified through patient-reported data. We will also continue expanding our longitudinal evaluation of treatments such as SAAT, with the understanding that meaningful answers often require following patients over time rather than relying on isolated experiences.

Scientific progress rarely begins with certainty. More often, it begins with careful observation, thoughtful questions, and the willingness to investigate patterns that may not yet be fully understood. My recent health journey has not changed the mission of Tick Bite Data—it has strengthened it.

If there is one message I hope readers take away from this article, it is this: never become comfortable accepting that feeling unwell is simply "your normal." Whether the answer ultimately proves to be Celiac disease, Alpha-gal Syndrome, another chronic illness, or something entirely different, your body has an incredible ability to tell you when something isn't right. Patients deserve to be heard, and they deserve access to healthcare systems that have both the time and the tools to listen.

Thank you to everyone who has shared your story, completed a survey, and supported this initiative. Every response contributes to a growing body of patient-reported evidence that has the potential to inform future research, improve clinical understanding, and ultimately help ensure that people living with Alpha-gal Syndrome are seen through the full complexity of their experiences—not simply through the narrow lens of a single food allergy.