Why Lived Experience Matters in Alpha-Gal Syndrome

Why Lived Experience Matters in Alpha-Gal Syndrome

Sometimes progress in healthcare begins with research.

And sometimes it begins when someone tells their story—and we listen closely enough to recognize that there may be an important question hiding within it.

That is one reason I was drawn to participate in the 2026 LymeX Healthathon, a national initiative designed to elevate the lived experiences of patients, caregivers, clinicians, and others affected by Lyme disease, tickborne conditions, and complex chronic illness.

The goal is not simply storytelling for storytelling’s sake. Real-world experiences can reveal patterns, unmet needs, and questions that may otherwise be difficult to see.

For me, one of those questions involves alpha-gal syndrome.

Why Alpha-Gal Belongs in the Tickborne Disease Conversation

Alpha-gal syndrome, or AGS, is a potentially serious tickborne allergy to a molecule called alpha-gal, which is found in most non-primate mammals.

It is sometimes described simply as a “red meat allergy,” but that description does not fully capture what living with alpha-gal can involve.

Depending on individual sensitivity, navigating AGS may require careful attention to things such as mammalian meat and other foods, dairy products for some individuals, gelatin and mammalian-derived ingredients, certain medications and supplements, restaurant meals, travel and social gatherings, and future tick exposure. Even a vegan diet may not eliminate every possible concern. Carrageenan, a red-seaweed-derived ingredient used in some plant-based foods, has been discussed as a possible trigger in a small subset of people with alpha-gal syndrome. In my own practice, one patient described an apparent reaction during a beach exposure involving Irish sea moss—another reminder of how difficult identifying potential triggers can sometimes be.

And alongside those practical concerns can come something much harder to measure: the mental load of constantly wondering whether something is safe.

In my clinical work with people affected by alpha-gal, I have heard about fear, hypervigilance, frustration, social limitations, and lives increasingly organized around avoiding a reaction.

That lived experience matters.

Alpha-Gal Is More Than Food

For my Healthathon submission, “When Hope Returns After Alpha-gal,” I shared the experience of one family who generously gave me written permission to tell their story anonymously.

Their daughter had experienced years of gastrointestinal symptoms, food restrictions, medical evaluations, and uncertainty. Her family kept searching for answers while trying to understand why ordinary foods could lead to such difficult experiences.

What stayed with me most, however, was not simply what she was eventually able to eat.

It was what her mother said about how life felt different:

“She finally feels included.”

That sentence captures something a laboratory value cannot.

For a child, eating is woven into birthday parties, school events, vacations, family dinners, celebrations, and simply being one of the kids.

When illness changes someone’s relationship with all of those things, improving quality of life can mean far more than changing a food list.

A “Glimmer of Hope”

After years of searching, this family pursued Soliman Auricular Allergy Treatment (SAAT), an auricular acupuncture approach being used by some practitioners for allergy-related conditions.

Following treatment, KJ’s mother reported that foods that had previously caused problems were no longer producing the symptoms their family had come to expect. She described her daughter eating foods she had avoided for years, feeling less different from other children, and participating more freely in everyday life.

Her mother called finding this option “a glimmer of hope.”

Their experience was incredibly meaningful to their family. But it is also important to be clear about what a story like this can—and cannot—tell us.

One patient’s experience does not establish that SAAT is effective for everyone with alpha-gal syndrome.

Instead, experiences like this make me want to ask better questions:

Can we measure what is happening?

Can these results be reproduced?

Who may benefit?

How durable are the changes?

And why might they occur?

Those are research questions.

And I believe they are questions worth asking.

Where Lived Experience and Research Meet

Evidence-based healthcare and patient experience should not have to compete with one another.

Patient stories can help generate hypotheses. Clinical observations can identify signals worth investigating. Rigorous research can then help us determine whether those signals represent meaningful, reproducible effects—and where the limitations lie.

This is particularly important when people living with complex or poorly understood conditions feel that the options available to them are limited.

We should neither dismiss encouraging clinical observations simply because we do not yet fully understand them nor accept them uncritically because the outcome is compelling.

We should get curious and study them well.

That is one of the ideas I most wanted to contribute through the LymeX Healthathon.

Why the LymeX Healthathon Matters

One thing I appreciate about this initiative is the recognition that patients, families, and clinicians may see pieces of the healthcare puzzle that are difficult to capture through traditional research alone.

Lived experience does not replace science.

It can help tell us where science needs to look next.

For alpha-gal syndrome in particular, I would like to see greater awareness of the full burden of the condition, better support for affected individuals and families, and thoughtful research into approaches that might one day expand the options available to them.

Most of all, I want people living with alpha-gal to know that their experiences matter—and that hope and scientific curiosity do not have to be opposites.

When Hope Returns After Alpha-Gal

Community voting is now open for the LymeX Healthathon, and my submission, “When Hope Returns After Alpha-gal,” is available to read and watch.

If you would like to support the story, I would be grateful if you would:

  • Read or watch the submission
  • Vote for it if it resonates with you
  • Leave a thoughtful comment about what stood out to you or why greater awareness and research in this area matter
  • Share it with others who may be interested in alpha-gal or tickborne conditions

View “When Hope Returns After Alpha-gal”: https://lymex.crowdicity.com/post/891694

I also encourage you to explore the stories shared by other Healthathon participants. There is tremendous value in hearing directly from people whose lives have been affected by tickborne and complex chronic conditions.

Sometimes a story offers comfort.

Sometimes it raises awareness.

And sometimes it gives us the next question worth investigating.

Sources & Further Reading

For reliable information about alpha-gal syndrome and the LymeX Healthathon, I encourage readers to explore these resources:

Centers for Disease Control and Prevention (CDC). About Alpha-gal Syndrome.

An overview of alpha-gal syndrome, symptoms, tick exposure, diagnosis, and management.

https://www.cdc.gov/alpha-gal-syndrome/about/index.html

Centers for Disease Control and Prevention (CDC). Fast Facts: Products That May Contain Alpha-gal.

Information about mammalian-derived foods, ingredients, medications, and other products that may be relevant for people living with alpha-gal syndrome.

https://www.cdc.gov/alpha-gal-syndrome/data-research/products-containing-alpha-gal/index.html

National Institutes of Health (NIH). LymeX Healthathon.

Information about the national LymeX initiative and its emphasis on lived experience, tickborne conditions, innovation, and shared learning.

https://www.nih.gov/challenges/lymex-healthathon

LymeX Healthathon. When Hope Returns After Alpha-gal.

My Healthathon submission exploring one family’s experience with alpha-gal syndrome, quality of life, hope, SAAT, and questions for future research.

https://lymex.crowdicity.com/post/891694

About the Author

Sarah Giardenelli, ND, MSOM, LAc, is a naturopathic doctor and licensed acupuncturist at Collective Health Center. Her clinical work includes individualized naturopathic and acupuncture care for people with complex health concerns, including alpha-gal syndrome and other allergy-related conditions.

Medical Disclaimer

This article is for educational and informational purposes only and is not intended to provide medical advice, diagnosis, or individualized treatment recommendations. The experience described here represents one family’s reported experience and should not be interpreted as evidence that SAAT will produce the same results for others. Alpha-gal syndrome can cause serious or life-threatening allergic reactions. Individuals with known or suspected alpha-gal syndrome should work with an appropriately qualified healthcare professional for diagnosis, risk assessment, and management.

 Collective Health Center

Excellence in Naturopathic Medicine, Acupuncture, and Integrative Medicine in Leesburg, Virginia for Complex Conditions and Chronic Pain in a Warm and Nurturing Environment.

Are you frustrated of dealing with your symptoms?

Are you ready to look for the answers & optimize your health with natural medicine?

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Beyond Being Double-Jointed: Thumb Hypermobility and Dysautonomia

Beyond Being Double-Jointed: Thumb Hypermobility and Dysautonomia

What We Know About Dysautonomia in Hypermobile EDS and Hypermobility Spectrum Disorders

Many people think of hypermobility as simply being "double-jointed."

Perhaps you've always been more flexible than your peers. Maybe you could do the splits as a child, bend your fingers in unusual ways, or were told you were simply "very flexible." For some individuals, hypermobility is relatively benign. For others, it may be part of a broader condition such as Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD).

What surprises many patients is that the symptoms often extend far beyond the joints.

Dizziness. Fatigue. Brain fog. Digestive problems. Bladder dysfunction. Temperature intolerance. Heart palpitations. Exercise intolerance. Anxiety-like symptoms.

At first glance, these symptoms may seem unrelated. Patients often find themselves seeing multiple specialists, collecting multiple diagnoses, and wondering whether anyone is looking at the bigger picture.

Increasingly, researchers believe that autonomic dysfunction—also known as dysautonomia—may be one of the important threads connecting many of these seemingly unrelated symptoms.

What Is the Autonomic Nervous System?

The autonomic nervous system (ANS) is the body's automatic control system. It regulates countless functions that occur without conscious thought, including:

  • Heart rate
  • Blood pressure
  • Blood vessel tone
  • Digestion and gut motility
  • Bladder function
  • Sweating
  • Temperature regulation
  • Breathing patterns

When functioning normally, the autonomic nervous system continuously adapts to keep the body in balance.

When it becomes dysregulated, symptoms can emerge throughout multiple organ systems.

Why Is Dysautonomia So Common in Hypermobile Patients?

Researchers do not yet have all the answers, but several overlapping mechanisms have emerged that may help explain the connection.

1. Connective Tissue Laxity and Blood Pooling

Connective tissue provides structural support throughout the body, including within blood vessel walls.

In individuals with hEDS and HSD, blood vessels may be more elastic and less able to maintain their shape against gravity. When standing, blood can pool excessively in the legs and lower body.

This reduces blood return to the heart and brain.

To compensate, the autonomic nervous system may increase heart rate and release stress hormones such as adrenaline in an attempt to maintain blood pressure and circulation.

For some individuals, this contributes to symptoms associated with Postural Orthostatic Tachycardia Syndrome (POTS), including:

  • Dizziness
  • Lightheadedness
  • Rapid heart rate
  • Brain fog
  • Fatigue
  • Exercise intolerance

2. Small Fiber Neuropathy

One of the most exciting areas of current research involves small fiber neuropathy (SFN).

Small nerve fibers help regulate many autonomic functions, including heart rate, blood pressure, digestion, sweating, temperature regulation, and bladder function. These nerves also play a role in pain and sensory perception.

Multiple studies have identified evidence of small fiber abnormalities in patients with hypermobile EDS and Hypermobility Spectrum Disorders. This suggests that autonomic symptoms may not simply be a secondary consequence of hypermobility but may also involve direct dysfunction of the nerves responsible for autonomic regulation.

In other words, the body's communication network itself may be impaired.

3. Dysfunction of the Body's Pressure Sensors

The body relies on specialized sensors called baroreceptors to detect changes in blood pressure and help regulate circulation.

Some researchers have proposed that connective tissue laxity may affect these pressure-sensing systems. If these sensors become overly sensitive—or less accurate—the nervous system may overreact to relatively minor changes in position or blood pressure.

This remains an area of ongoing investigation, but it may help explain why some patients experience dramatic symptoms when standing, during heat exposure, after meals, or when dehydrated.

4. Mast Cell Activation and Blood Vessel Instability

Many patients with hEDS and HSD also report symptoms consistent with Mast Cell Activation Syndrome (MCAS).

Mast cells release chemical mediators such as histamine that influence blood vessel tone, permeability, immune signaling, and inflammation.

When these mediators are released excessively, blood vessels may dilate, blood pressure may fluctuate, and symptoms such as flushing, palpitations, dizziness, itching, digestive symptoms, and fatigue may worsen.

While researchers are still working to fully understand the relationship between hypermobility, mast cells, and dysautonomia, clinicians frequently observe significant overlap among these conditions.

5. Deconditioning: Cause, Consequence, or Both?

Many individuals living with chronic pain, fatigue, dizziness, and exercise intolerance naturally become less active over time.

This can lead to cardiovascular deconditioning, including reduced blood volume and decreased cardiovascular fitness.

Unfortunately, deconditioning can worsen autonomic symptoms, creating a frustrating cycle:

Symptoms → Reduced Activity → Deconditioning → More Symptoms

Importantly, this does not mean dysautonomia is caused by being "out of shape." Rather, deconditioning often develops as a consequence of living with chronic symptoms and may further amplify the underlying problem.

Why So Many Patients Also Have Digestive Symptoms

For many years, gastrointestinal symptoms in hypermobile individuals were viewed as separate issues. Today, researchers increasingly recognize that autonomic dysfunction may be one of the major factors linking hypermobility and digestive complaints.

The autonomic nervous system helps regulate movement throughout the digestive tract. When autonomic signaling becomes disrupted, patients may experience:

  • Reflux
  • Nausea
  • Early fullness
  • Bloating
  • Constipation
  • Diarrhea
  • Abdominal pain
  • Delayed stomach emptying (gastroparesis)

The Ehlers-Danlos Society notes that gastrointestinal symptoms are common in both hypermobile EDS and Hypermobility Spectrum Disorders and can significantly impact quality of life. Researchers have identified important relationships among hypermobility, disorders of gut-brain interaction, gastrointestinal dysmotility, and autonomic dysfunction.

For many patients, understanding this connection can be profoundly validating. Digestive symptoms may not be isolated problems but rather another expression of the same underlying physiologic processes affecting multiple body systems.

Why Understanding the "Why" Matters

As a naturopathic doctor, one of the most important lessons I have learned from caring for patients with hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders is that symptoms rarely exist in isolation.

Patients may arrive carrying diagnoses from multiple specialists—POTS, IBS, chronic constipation, migraines, bladder dysfunction, chronic fatigue, mast cell activation syndrome, anxiety, or chronic pain—yet still feel that no one has connected the dots.

One of the core principles of naturopathic medicine is Tolle Causam—identify and address the cause. Another is to treat the whole person rather than focusing on individual symptoms or organ systems.

While we do not yet have all the answers regarding dysautonomia in hEDS and HSD, understanding the underlying physiologic mechanisms helps us move beyond symptom management and toward a more comprehensive understanding of why these seemingly unrelated symptoms may occur together.

The better we understand the "why," the better equipped we are to support patients living with these complex conditions.

What New Research Is Teaching Us

One of the most significant developments in recent years comes from a 2025 study by Novak and colleagues that evaluated 270 individuals with hypermobile Ehlers-Danlos syndrome using comprehensive autonomic, neurologic, and cerebrovascular testing.

The researchers identified several important findings, including:

  • Evidence of widespread autonomic dysfunction
  • Reduced cerebral blood flow when standing
  • Frequent symptoms of cerebral hypoperfusion, including dizziness and brain fog
  • High rates of small fiber neuropathy
  • Evidence of cerebrovascular dysregulation

The authors concluded that hypermobile EDS is associated with measurable cerebrovascular, autonomic, and neuropathic abnormalities rather than simply representing a musculoskeletal condition.

These findings are important because they provide objective physiologic evidence supporting what many patients have reported for years—that their symptoms extend far beyond joint hypermobility alone.

At the same time, this study raises as many questions as it answers. Researchers are still working to determine whether small fiber neuropathy is a primary driver of dysautonomia, whether connective tissue abnormalities initiate the process, how mast cell activation fits into the picture, and why some individuals are significantly more affected than others.

While much remains to be learned, the field is moving rapidly toward a more integrated understanding of the relationship between connective tissue, the autonomic nervous system, circulation, immune signaling, and gastrointestinal function.

Looking Beyond the Joints

Historically, hypermobility disorders were viewed primarily through a musculoskeletal lens. Increasingly, however, research suggests that for many patients, these conditions are far more systemic.

The emerging picture is one of a complex, multisystem condition involving connective tissue, the autonomic nervous system, immune regulation, gastrointestinal function, and potentially small nerve fiber integrity.

While researchers are still working to understand exactly how these systems interact, it is becoming increasingly clear that dysautonomia may represent one of the key threads connecting many of the symptoms experienced by individuals with hypermobile EDS and Hypermobility Spectrum Disorders.

For patients who have spent years searching for answers, that recognition matters.

Understanding the underlying mechanisms does not solve every problem, but it provides a framework for more targeted evaluation, more personalized treatment approaches, and perhaps most importantly, validation that these symptoms are real, interconnected, and worthy of further investigation.

The more we learn, the more connected these systems appear to be.

And perhaps most importantly, the more we understand these connections, the better positioned we are to provide meaningful, individualized care for the people living with them.

References

Novak P, et al. Cerebrovascular, autonomic and neuropathic features of hypermobile Ehlers-Danlos syndrome. 2025.

The Ehlers-Danlos Society. Gastrointestinal Problems in Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.

About the Author

Dr. Sarah Giardenelli, ND, MSOM, LAc is a naturopathic doctor, licensed acupuncturist, and founder of Collective Health Center in Leesburg, Virginia. She specializes in helping individuals with complex chronic health conditions uncover the root causes contributing to their symptoms through an integrative, evidence-informed approach.

Over the years, Dr. Giardenelli has worked with many individuals living with hypermobile Ehlers-Danlos syndrome, Hypermobility Spectrum Disorders, dysautonomia, mast cell activation syndrome, chronic gastrointestinal dysfunction, and related complex chronic illnesses. These patients have been some of her greatest teachers.

"The more I work with individuals living with hypermobility disorders, the more I appreciate how interconnected the body's systems truly are. Their experiences continually challenge us to think beyond isolated symptoms and to look deeper at the relationships between connective tissue, the nervous system, immune function, circulation, and gastrointestinal health. They remind us that good care begins with listening, curiosity, and a willingness to keep learning." ~Dr. Sarah

Medical Disclaimer

This article is intended for educational purposes only and is not a substitute for individualized medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional regarding questions about your health.

 Collective Health Center

Excellence in Naturopathic Medicine, Acupuncture, and Integrative Medicine in Leesburg, Virginia for Complex Conditions and Chronic Pain in a Warm and Nurturing Environment.

Are you frustrated of dealing with your symptoms?

Are you ready to look for the answers & optimize your health with natural medicine?

This is how we help.

Contact Us!

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Acupuncture over opioids for treating pain

Acupuncture over opioids for treating pain

Acupuncture may be the solution to your chronic pain. There are various treatments besides opioids and acupuncture is proven to be one of them. A recent study in the Journal of the American Medical Association suggests that opioids for chronic, non-cancer pain, show just small improvements in pain and physical function with increased risk of vomiting compared to placebo. The study also compared the effects of opioids to non-opioid alternatives and there is evidence to suggest that the benefit for pain and functioning is similar. However, acupuncture is without the side-effects of non-opioids, like NSAIDs.

Some folks who've been on opioids for a long time note that when they stop taking them their pain increases, so they assume the medication must be helping with their pain, and swear by these medications. However, after discontinuing opioids, it takes the body 3 to 5 days to start producing its own natural opioids which are suppressed when taking exogenous opioid medications. Opioids also activate microglial cells in the brain, which actually promotes pain and inflammation, and this is behind the tolerance, dependence and respiratory depression issues associated with opioids. In other words, long term opioid use INCREASES pain and inflammation!
 
In short, acupuncture can actually help to increase natural opioid production in the body, which are much better options for long term pain management. Exploring the benefits of acupuncture may leave you feeling better than ever before. A naturopathic approach that considers the function of your whole system when addressing concerns is also essential. We know now that imbalances in the gut flora can contribute to an increase in pain. Suffering with pain and looking for non-opioid options? Please schedule for acupuncture or a naturopathic visit with me today there are better options!
 
Dr. Sarah is a naturopathic doctor & acupuncturist at Collective Health Center in Leesburg Virginia. She is an expert in natural medicine and enjoys working with both healthy patients looking to optimize their health and with those with chronic disease and pain looking to turn their situation around. Learn more by filling out the form below.

 

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