Treating GI Symptoms in Postural Orthostatic Tachycardia Syndrome (POTS)

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Professional Preface

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia that disrupts the autonomic nervous system that controls both heart rate and blood pressure. This results in symptoms of excessively fast heart rate (called tachycardia) as well as lightheadedness (called pre-syncope, literally “pre-fainting”) upon standing. In addition, POTS frequently has a gastrointestinal (GI) component such as visceral hypersensitivity, where digestion is perceived as painful or uncomfortable [1], and gut dysmotility, where the muscles or nerves of the GI tract become impaired, causing abnormal contractions or a slower speed of digestion.

Several underlying conditions are known to be associated with POTS, including two disorders that form a “trifecta”:

  • Ehlers-Danlos Syndrome (hEDS) is a collagen protein disorder that causes joint hypermobility and subluxation (“bendy”) joints [3],
  • Mast Cell Activation Syndrome (MCAS) is a subtype of Mast Cell Activation Disorder (MCAD) in which mast cells are triggered by specific foods, heat, emotion, and physical stimuli, due to the abnormal sensitivity of mast cells, but without mast cell proliferation. MCAS is an immunological disorder where mast cells inappropriately release excessive chemical mediators, including histamine and cytokines, which result in chronic and recurrent severe allergy-like symptoms, which usually include flushing, hives, abdominal pain, diarrhea, and anaphylaxis, a severe, potentially fatal allergic reaction that involves airway constriction and a severe drop in blood pressure [1].

It often takes considerable time for doctors to finally determine what the underlying cause of the symptoms of POTS is, and to determine whether the person has any or all of the other disorders in the trifecta (hEDS, MCAS). For this reason, the symptoms, including gastrointestinal (GI) symptoms, are managed within the context of the possible presence of the other two disorders [1].

As outlined in a 2025 Clinical Practice Update on GI Manifestations in this trifecta of disorders [1], determining a treatment approach for someone with hEDS, MCAS, or POTS poses a significant challenge for clinicians who are inexperienced with this triad of disorders, and the possibility that an individual may have symptoms from each.

“Recognizing and treating GI symptoms in patients with hEDS and comorbid POTS or MCAS present major challenges for clinicians, who often feel under equipped to address their needs. [1]”

As outlined on the About Me page, while I certainly didn’t set out to become well-versed on these disorders, in early 2019, I was diagnosed with MCAS (called MCAD, in those days) by the head of Allergy and Immunology at a local teaching hospital in Vancouver, BC. After reading quite a few academic papers recommended by this Professor, as well as doing subsequent reading on the subject, by late 2019, I was able to help support others diagnosed with MCAS. As my knowledge grew, in 2020, I began helping people with any three of these disorders, and I continue to keep myself current on recommendations in their dietary management, including reading the 2025 Clinical Practice Updates on GI Manifestations [1].

POTS Not Associated with Anxiety or Panic Disorder

While it was originally thought that the symptoms of POTS, such as tachycardia and heart palpitations, indicated it was related to anxiety disorder or panic disorder, that has since been disproven. In fact, research does not show an association between people with POTS and mental health disorders [2].

Treatment for POTS

Simple Cases of POTS

In simple cases of POTS, where hEDS and MCAS have been excluded, treatment is fairly straightforward and includes

  • increasing fluid intake to 2-3 liters per day
  • salt consumption to 8,000 mg to 10,000 mg per day
  • wearing compression stockings to maintain blood volume
  • raising the head of the bed (also to maintain blood volume)
  • doing recumbent (reclining) exercises such as rowing, swimming, and using a recumbent bicycle
  • avoiding substances that can worsen orthostatic symptoms

Even in cases of simple POTS with no involvement of MCAS or hEDS, symptoms such as GI dysmotility (slow stomach emptying) are not uncommon [1,4] and require targeted dietary adjustments, depending on where in the GI tract it occurs.

Concurrent POTS, Ehlers-Danlos Syndrome (hEDS), and/or Mast Cell Activation Syndrome (MCAS)

As outlined above, managing simple cases of POTS is relatively straightforward in terms of dietary interventions, but can become significantly more complex when a person with POTS is also diagnosed with Ehlers-Danlos Syndrome (hEDS) and/or Mast Cell Activation Syndrome (MCAS).

For individuals diagnosed with POTS who also have comorbid Ehlers-Danlos Syndrome (hEDS), nutritional support can involve specialized diets for gastroparesis (where food remains in the stomach for a long period of time) to improve GI symptoms. Those diagnosed with POTS who also have comorbid Mast Cell Activation Syndrome (MCAS) may need to find relief in being guided through a histamine-elimination diet. The process is time-consuming, but worth trying, as it can provide remission of symptoms.

A 2021 cross-sectional research study of 600 individuals diagnosed with Ehlers-Danlos Syndrome (hEDS) found that 98% also met diagnostic criteria for disorders of gut-brain interactions (DGBI), which includes functional dyspepsia and irritable bowel syndrome. Given the significant number of individuals diagnosed with POTS who are also found to have hEDS, considering this possibility is necessary to provide overall dietary support.

Clinical Considerations

Dietary support for those with POTS varies considerably between individuals and depends on whether it is a simple case of POTS, or whether there is concurrent Ehlers-Danlos Syndrome (hEDS) and/or Mast Cell Activation Disorder (MCAS).

Even in cases where a person has been diagnosed with one or both of the other disorders in the “trifecta”, dietary interventions may range from a straightforward low fermentable carbohydrate diet, dairy-free or gluten-free diet, or may be significantly complex and involve implementing a gastroparesis or small particle diet, and/or teaching a histamine-elimination diet. Dietary support has to be evaluated on a case-by-case basis, which is why the first step to getting started is with an Initial Consultation.

While I never set out to be a clinician that supports people with POTS, hEDS, and/or MCAS, I am grateful that through my own diagnosis with MCAS in 2019 and seeing multiple family members with hEDS and/or POTS, I became one of a handful of Dietitians that are equipped to address people’s nutritional needs.

More Info

If you have been diagnosed with any one of the “trifecta” of Postural Orthostatic Tachycardia Syndrome (POTS) with or without Ehlers-Danlos Syndrome (hEDS), and/or Mast Cell Activation Syndrome (MCAS), I can help you minimize your symptoms. Learn about me and view my services for hEDS, MCAS, and POTS page.

To your good health!

Joy

You can follow me on:

Twitter: https://twitter.com/jyerdile
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References

  1. Aziz Q, Harris L, Goodman B. AGA Clinical Practice Update on GI Manifestations and Autonomic or Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome: Expert Review, Clinical Gastroenterology and Hepatology, 2025; 23, 1291-1302
  2. Long-term outcomes of adolescent-onset postural orthostatic tachycardia syndrome. S.J. Kizilbash, S.P. Ahrens, R. Bhatia, J.M. Killian, S. A. Kimmes, E.E. Knoebel, P. Muppa, A.L. Weaver, P.R. Fischer. Clin. Auton. Res. October 2013. Abstract presented at the 24th International Symposium on the Autonomic Nervous System.
  3.  Dysautonomia in the joint hypermobility syndrome. Gazit Y, Nahir AM, Grahame R, Jacob G. Am J Med. 2003 Jul;115(1):33-40.
  4.  The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Satish R Raj, MD MSCI, Indian Pacing Electrophysiol J. 2006 April-Jun; 6(2): 84-99.
  5. Lam CY, Palsson OS, Whitehead WE, et al. Rome IV functional gastrointestinal disorders and health impairment in subjects with hypermobility spectrum disorders or hypermobile Ehlers-Danlos syndrome. Clin Gastroenterol Hepatol 2021;19:277–287.e3.

 

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