When Two Patient Datasets Point in the Same Direction: What Thousands of AGS Patients Are Telling Us

A newly published study identifies major gaps in Alpha-gal Syndrome research. An independent analysis of Tick Bite Data’s patient-reported surveys shows where some of those unanswered questions may already be emerging.

In 2019, Jennifer Platt, PhD, and colleagues began developing a patient survey to better characterize the experience of people living with Alpha-gal Syndrome. Their study ultimately included 3,437 adults who reported a healthcare-professional-confirmed AGS diagnosis, with data collected between December 2019 and September 2024. The resulting paper describes a condition affecting far more than the gastrointestinal and skin systems most commonly associated with food allergy and identifies several areas where the authors believe additional research is urgently needed.

The study reported gastrointestinal symptoms in 86.2% of participants, skin symptoms in 83.5%, respiratory symptoms in 59.8%, cardiovascular symptoms in 41.3%, emotional symptoms in 38.2%, motor symptoms in 23.7%, and nervous-system symptoms in 23.3%. Participants also identified reactions to products extending well beyond mammalian meat, including dairy, gelatin, prescription and over-the-counter medications, and personal-care products. The authors concluded that AGS may involve “a broad range of mammalian ingredient-containing products” and a wider distribution of body-system involvement than has traditionally been emphasized.

Those findings are important on their own. They are also notable to us because Tick Bite Data had already begun developing and collecting its own patient-reported research before we were aware of this research team or their study. Our current primary Alpha-gal survey contains 3,275 submissions. It was not designed to replicate the published study, and the two datasets should not be treated as interchangeable. Yet when examined side by side, two independently developed research efforts—created without knowledge of one another—repeatedly point toward many of the same unresolved areas.

That convergence deserves attention.

Two Large Patient-Reported Datasets, Built Differently

The published study was developed through an established research collaboration. The paper states that the original creation of the survey and pilot portion of the study was funded by United Therapeutics, previously REVIVICOR. The authors also disclose additional research and professional relationships and state that funders were not involved in the study design, data collection, analysis, interpretation, manuscript preparation, or decision to publish, apart from the disclosed participation of a United Therapeutics employee as an author.

Tick Bite Data’s surveys were developed independently and have, to date, been self-funded. Our data collection grew from a different starting point: listening to patients describe symptoms, diagnostic experiences, exposures, treatment decisions, and disruptions to daily life that were not always reflected in the narrow public description of AGS as a delayed allergy to red meat.

The differences between the projects matter. They also make the areas of overlap more interesting. Patient-led data collection is not a substitute for controlled clinical research, and descriptive surveys cannot establish causation. Patient-reported datasets can, however, identify patterns, expose gaps in existing questionnaires, and help determine where more rigorous investigation may be warranted.

The authors reach a similar conclusion, writing that future research should incorporate the patient perspective, including exposure sources, symptoms, affected body systems, and reaction timing. They specifically call for controlled studies using confirmed diagnoses, expanded demographics, validated questions, and more complete response collection.

A Shared Limitation: Who Is Represented?

One of the clearest limitations identified in the paper is demographic representation. The study population was 95.8% White and 81.5% female. The researchers caution that this lack of racial and sex diversity may limit generalizability and note that the true demographic distribution of AGS remains unknown.

Tick Bite Data shows a similar limitation. Among 2,987 respondents who answered the ethnicity question in our primary survey, 96.3% identified as White. Among 3,242 who answered the gender question, 76.2% identified as female and 23.7% as male.

Our cohort is somewhat more balanced by sex, but it is not meaningfully more racially diverse. Rather than presenting this as a difference between the studies, the similarity raises an important question for both: where are the patients who are not being reached by AGS surveys?

Recruitment through advocacy organizations, support groups, social media, and online patient communities may reach people who are actively seeking AGS information while missing others who remain undiagnosed, have limited healthcare access, are less engaged online, or do not recognize their symptoms as potentially related to AGS. Expanded demographic representation is therefore not simply a statistical concern. It may determine whether researchers are seeing the full clinical picture.

Multisystem Symptoms: Similar Signals, Different Questions

The published study found that AGS symptoms extended across all major body systems and specifically identified neurological, psychiatric, respiratory, cardiovascular, mood, and motor effects as areas requiring greater awareness. Importantly, its questionnaire categorized symptoms associated with reported alpha-gal exposure.

Tick Bite Data asks several of these questions differently. Our primary survey does not require every symptom to be linked to a discrete, identifiable exposure event. For that reason, our percentages should not be compared directly with theirs as though both surveys measured the same outcome.

The patterns are nevertheless notable. Across our 3,275 primary survey submissions, brain fog was reported 1,833 times, mental fatigue 1,666 times, anxiety 1,519 times, headache 1,478 times, dizziness 1,443 times, rapid heart rate 1,313 times, low blood pressure 816 times, and high blood pressure 538 times.

These observations do not establish that AGS caused each symptom, nor do they establish a shared biological mechanism. They do show that large numbers of patients independently report neurological, cognitive, mood, and cardiovascular experiences in addition to the better-recognized allergic manifestations.

The researchers similarly caution that symptom attribution can be difficult in patient-reported research and that coexisting conditions may contribute to reported symptoms. Their paper calls for future research to identify “patterns and connections between body systems” and to investigate symptom clustering according to exposure route and product type.

Tick Bite Data’s findings support the value of that next step. Rather than asking whether one isolated symptom “belongs” to AGS, future studies may need to examine which symptoms occur together, when they occur, whether they change with avoidance, and whether recognizable phenotypes emerge across different patient groups.

What Happens With Continued or Hidden Exposure?

One of the most interesting recommendations in the paper is the call to explore “the impacts of continued exposure to mammalian products (including dairy) even in asymptomatic situations.”

Tick Bite Data cannot currently answer what happens during biologically meaningful but clinically asymptomatic exposure. Our surveys do not verify exposure levels, laboratory markers, adherence to avoidance, or whether a participant was unknowingly exposed to alpha-gal when no obvious allergic reaction occurred.

Our data do, however, illustrate why this question is difficult.

Among respondents to our primary survey, 72.9% reported reactions to dairy, 78.7% reported reactions to gelatin-containing foods, and 67.1% reported having reacted to medications containing gelatin. Among 2,437 respondents answering a question about quantity, 88.1% reported symptoms after consuming small amounts of mammalian products. Among 2,418 respondents answering a question about cross-contamination, 73.1% reported having experienced reactions they attributed to cross-contact.

The published study found a similar expansion beyond meat. Participants reported reactions to dairy at 66.9%, gelatin at 61.3%, prescription medications at 41.3%, over-the-counter medications at 36.4%, and personal-care products at 42.0%.

The questions and denominators differ, so these percentages should not be used as direct prevalence comparisons. The shared observation is more fundamental: both independently collected datasets suggest that the exposure landscape of AGS extends beyond a steak, hamburger, or obvious serving of mammalian meat.

That creates a challenge for future studies of “avoidance.” Before researchers can determine whether symptoms persist despite avoidance, they may first need a reliable way to determine whether complete avoidance is actually possible.

The Labeling Problem Appears in Both Datasets

The researchers address that problem directly. Their paper notes that the mammalian source of certain ingredients in medications and personal-care products is often unclear and specifically discusses ingredients such as magnesium stearate, lactose, and gelatin. The authors write that “it is crucial for food, pharmaceutical, and manufacturing companies to list out mammalian products and excipients for consumer awareness to reduce exposures and impacts on patients with AGS.”

That recommendation closely aligns with what patients have repeatedly described to Tick Bite Data.

When 73.1% of respondents answering our cross-contamination question report reactions they attribute to cross-contact, 88.1% report symptoms after small quantities, and more than two-thirds of respondents to our medication question report reactions to gelatin-containing medications, ingredient transparency becomes part of the research question itself.

A patient who believes they are avoiding mammalian products may still encounter ingredients whose source is not disclosed. A researcher studying symptoms “despite avoidance” therefore faces the same problem as the patient: the exposure may not be identifiable from the label.

This does not mean every unexplained symptom is caused by hidden alpha-gal exposure. It means exposure cannot always be confidently ruled out.

What Happens When Symptoms Do Not Resolve?

Tick Bite Data has also been asking whether symptoms change with avoidance and over time.

Among 2,381 respondents answering whether neurological or mood symptoms improve when mammalian foods are avoided, 74.5% reported improvement while 25.5% did not. Among 2,234 respondents answering whether their symptoms had improved over time, 62.0% selected “No,” 36.1% selected “Yes,” and a small number described their symptoms as staying the same.

These results require careful interpretation. They do not prove persistent AGS pathology after complete avoidance. We cannot independently verify dietary adherence, hidden mammalian exposure, repeat tick bites, coexisting tick-borne disease, other medical conditions, medications, environmental exposures, or unrelated causes of symptoms.

They do provide a reason to ask a more precise research question.

If some patients continue to report symptoms while attempting mammalian avoidance, what explains those symptoms? Are they experiencing unrecognized exposure? Does symptom resolution vary by organ system? Do some physiological effects continue beyond the recognizable allergic reaction? Are other tick-associated conditions contributing? Are certain symptoms unrelated to AGS altogether?

Those possibilities cannot be separated through descriptive survey data alone. They can be separated through prospective studies designed specifically to answer them.

Quality of Life: One of the Research Gaps Patients Are Already Describing

The paper explicitly states that “future research on the quality of life and social impacts of AGS is needed.” Its discussion considers the possibility that food restrictions, restaurant avoidance, disclosure of medical information, and exposure concerns may affect social interactions and career development.

Tick Bite Data recently began asking those questions directly through our smaller Ongoing Symptoms survey. This dataset currently contains 77 submissions and should be treated as exploratory. Individual quality-of-life questions have smaller response counts, so these early percentages should not be generalized to the entire AGS population.

Among 53 respondents who selected at least one item from a question about the social and practical effects of AGS, 98.1% reported fear of eating food prepared by others, 73.6% reported avoiding restaurants, 58.5% reported anxiety about leaving home, 52.8% reported social isolation, 49.1% reported avoiding travel, 47.2% reported financial strain, 43.4% reported avoiding family gatherings, and 35.8% reported difficulty maintaining employment.

Healthcare access appeared in the same exploratory dataset. Among 54 respondents who answered a question about avoiding medical care because of concerns involving AGS-related exposures, medications, or lack of provider awareness, 61.1% reported having done so at least rarely, sometimes, or frequently.

The numbers are preliminary. They come from a small, self-selected population and are not estimates of population prevalence. They do, however, suggest that the quality-of-life question identified in the published research is measurable and may extend into employment, travel, social participation, healthcare decisions, and financial burden.

These early findings reinforce why continued participation matters. Tick Bite Data needs additional submissions to the Ongoing Symptoms survey to expand this analysis, strengthen the dataset, and better understand how AGS affects employment, travel, social participation, healthcare decisions, financial burden, and other aspects of daily life. A larger patient-reported sample will allow us to examine these patterns with greater confidence and determine which experiences warrant more focused investigation.

Diagnostic Delay Remains a Shared Problem

The published study reported a mean age at first reaction of 45.3 years and a mean age at diagnosis of 49.6 years, representing a 4.3-year difference. The researchers describe delayed recognition as an important target for improved healthcare-professional education.

Tick Bite Data measures diagnostic delay differently, so a direct comparison with their 4.3-year mean would be inappropriate. Our categorical results nevertheless show the same broad problem.

Among 2,488 respondents answering how long diagnosis took after symptoms began, 24.2% reported waiting more than three years. Among 2,473 answering whether they were initially misdiagnosed, 66.1% said yes. Among 2,493 answering whether their physician had previously heard of Alpha-gal Syndrome, 36.3% said no.

Different questionnaires have arrived at a similar conclusion: recognition remains inconsistent, and a substantial group of patients experiences prolonged diagnostic pathways.

Broader awareness of gastrointestinal, neurological, cardiovascular, dermatological, and other presentations may help shorten that pathway, although education alone will not solve the limitations of current testing.

One Question Our Current Data Cannot Answer

The study also examines alpha-gal-specific IgE testing. It found that 0.8% of respondents reporting an initial test result had alpha-gal sIgE below 0.1, while 2% reported levels below 0.1 on their latest test. The authors caution that some patients may become undetectable over time despite a previous diagnosis or may present with symptoms compatible with AGS despite negative testing. They conclude that “more work needs to be done to identify AGS in the absence of detectable alpha-gals IgE” and call for improved testing sensitivity and specificity.

Tick Bite Data’s current primary survey cannot meaningfully address that question. We ask about diagnosis and blood testing, but we do not have the longitudinal laboratory values necessary to determine whether alpha-gal sIgE declined, became undetectable, remained stable, or corresponded with ongoing clinical symptoms.

That limitation is useful in itself because it identifies an area where patient-reported research will require clinical collaboration. Longitudinal laboratory data paired with detailed symptom and exposure histories could help determine how well current biomarkers reflect disease activity over time.

What These Two Datasets Can Tell Us Together

The published study and Tick Bite Data were not built to validate one another. The surveys were created independently, asked different questions, used different recruitment pathways, and have different methodological strengths and limitations.

That makes the areas of convergence worth examining carefully.

Both datasets describe symptoms extending beyond gastrointestinal and skin reactions. Both identify cardiovascular and neurological experiences that warrant closer investigation. Both show that exposures extend beyond mammalian meat. Both expose the difficulty created by poorly identified mammalian-derived ingredients. Both point toward prolonged diagnostic pathways. The published research identifies quality of life, social impact, asymptomatic exposure, symptom phenotypes, broader demographics, and testing limitations as areas requiring future research. Early Tick Bite Data findings suggest that several of those questions already contain measurable patient-reported signals.

Neither dataset can establish the biological mechanisms behind those signals. Neither can determine causation from descriptive survey responses alone. Both can help researchers decide what questions should come next.

The study concludes that future controlled research should include confirmed diagnoses, expanded demographics, validated questions, better characterization of product exposures, and closer examination of psychological and quality-of-life effects.

We agree.

Patient-reported research becomes most useful when it does not attempt to replace laboratory or clinical investigation, but instead helps direct it. Thousands of patients have now contributed their experiences to two independently developed datasets. The similarities do not provide final answers. They provide increasingly specific questions.

Those questions now deserve to be tested.