Services for MCAS, hEDS and POTS
I have been providing dietary support for Mast Cell Activation Syndrome (MCAS) since 2019, and for hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS) since 2024. I also support adults living with long-COVID who have symptoms of Mast Cell Activation Syndrome (MCAS) and/or Postural Orthostatic Tachycardia Syndrome (POTS).
I am current with evidence-based dietary interventions for managing this “trifecta” of disorders as adjunct treatment to the various classes of medications that may be prescribed by your doctor or specialists, including different types of antihistamines (H1, H2), mast cell stabilizers, gastrointestinal medications, etc.
Dietary Services for MCAS, hEDS & POTS
Since the nutrition needs of each person with Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) are different, and ~60% of individuals have been diagnosed with more than one of these disorders, which symptoms take priority needs to be factored in. For this reason, an Initial Consultation is the first step.
1. Initial Consultation
The Initial Consultation is an appointment to discuss your diagnoses (hEDS, MCAS and/or POTS) and pending diagnoses, and the foods that you know or suspect trigger symptoms. Once we determine which symptoms are your priority, we will discuss which dietary approach option would be the most suitable.
2. Low Histamine & Bioactive Amine Diet
The first service after the Initial Consultation for those with either MCAS or hEDS is a Complex Clinical Nutrition Appointment to teach a Low Histamine & Bioactive Amine diet, and the reason is explained below.
Histamine intolerance can result in a wide range of gastrointestinal symptoms, including abdominal bloating (distention), diarrhea, abdominal pain, and constipation, and non-GI symptoms, including hives and flushing. A low histamine diet is effective in significantly improving and even resulting in remission of symptoms of histamine intolerance (Comas-Baste et al., 2020).
In Mast Cell Activation Syndrome (MCAS), mast cells release excessive mediators, including histamine, which may result in GI symptoms and non-GI symptoms (Kucharik, A.H., Chang, C., 2020). I have been teaching a diet low in histamine, histamine liberators, and other bioactive amines, including tyramine (which may underlie migraines), since 2019, and this remains a diet-first approach in MCAS (Weinstock L, B et al., 2020).
An academic survey and thesis evaluated dietary interventions for managing GI symptoms in 229 adults with hEDS or Hypermobility Spectrum Disorder (HSD) and found that a low histamine diet resulted in a 66.6% improvement in GI symptoms in those who followed it for 3 months or more (Steiner, 2023).
REFERENCES
Comas-Baste O., Sánchez-Pérez S., Veciana-Nogues M.T., et al. (2020). Histamine Intolerance: The Current State of the Art. Biomolecules, 10(8). https://doi.org/10.3390/biom10081181
Kucharik AH, Chang C. The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Clin Rev Allergy Immunol. 2020 Jun;58(3):273-297. doi: 10.1007/s12016-019-08755-8. PMID: 31267471.
Weinstock, L. B., Pace, L. A., Rezaie, A., Afrin, L. B., & Molderings, G. J. (2020). Mast Cell Activation Syndrome: A Primer for the Gastroenterologist. Digestive Diseases and Sciences, 65(4), 965–981. https://doi.org/10.1007/s10620-020-06264-9
Steiner, L. (2024). Nutrition implications in hypermobile Ehlers-Danlos syndrome (hEDS)/hypermobility spectrum disorder (HSD) (Master’s thesis, University of North Dakota). UND Scholarly Commons. https://commons.und.edu/theses/7157/
The Low Histamine & Bioactive Amine Diet teaching that I provide as a Complex Clinical Nutrition Appointment is based on the most current compiled list of dietary histamine, histamine liberators, and other bioactive amines, including tyramine.
Cost: $170 (GST-exempt). The appointment is 50 minutes in length, with 10 minutes for reviewing clinical data, answering questions, and discussing options for the next stage of care.
Individual responses to a Low Histamine & Bioactive Amine Diet vary. Some individuals with hEDS without MCAS, or MCAS without hEDS, experience sufficient symptom improvement that further dietary intervention may not be necessary. For most people, however, identifying food triggers and modifying their diet accordingly is necessary to address ongoing gastrointestinal symptoms. The next step depends on individual symptoms and response to the initial intervention.
3. Dietary Approach Options for hEDS, MCAS and/or POTS
i. Low-FODMAP Diet
In addition to a low-histamine diet, gluten-free and dairy-protein-free diets have been part of dietary recommendations for MCAS since I first started providing services for it in 2019 (Molderings GJ et al., 2016), and these diets are still used (Weinstock L, B et al., 2020).
Wheat and other gluten-containing grains, as well as certain dairy products, can be sources of FODMAPs. If people know these foods trigger their symptoms, or if they are triggered by legumes (beans and lentils), nuts and seeds, or vegetables like onions and garlic, I often recommend a low-FODMAP diet as the next step. Interestingly, a 2017 study had people with IBS-d (diarrhea-dominant) follow a low-FODMAP diet and found it significantly reduced histamine levels (McIntosh K. et al., 2017).
Dietary modifications for hEDS address functional gastrointestinal disorders, including IBS (Collins, H., 2020), and may involve a low-fermentable carbohydrate diet (low-FODMAP) or using a specialized type of food journal to determine which foods or food components trigger adverse symptoms. Dietary modifications in hEDS can be significantly more complex, requiring implementation of a diet for various stages of slow gastric emptying (Collins, H., 2020), which would be provided in subsequent services to design an Individual Meal Plan (see below).
REFERENCES
Molderings GJ, Haenisch B, Brettner S, et al. Pharmacological treatment options for mast cell activation disease. Naunyn-Schmiedebergs Arch Pharmacol. 2016;389:671-694.
Weinstock, L. B., Pace, L. A., Rezaie, A., Afrin, L. B., & Molderings, G. J. (2020). Mast Cell Activation Syndrome: A Primer for the Gastroenterologist. Digestive Diseases and Sciences, 65(4), 965–981. https://doi.org/10.1007/s10620-020-06264-9
McIntosh K, Reed DE, Schneider T, et al. FODMAPs alter symptoms and the metabolome of patients with IBS: a randomised controlled trial. Gut. 2017;66:1241-51.
Collins H. Nutritional Approaches to Treating GI Concerns in EDS. The EDS Society 2020 Virtual Summer Conference. [https://www.ehlers-danlos.com/2020-virtual-summer-conference-resources/]
The Low FODMAP Diet Package systematically implements a low-FODMAP diet in three stages. This helps determine which specific FODMAP foods contribute to symptoms and which do not, which reduces the number of foods that need to be avoided long-term. Knowing which FODMAP foods do not cause symptoms (or alternatively, the foods that do cause symptoms, determined with the IBS-Package, below) will enable you to avoid foods that contribute to symptoms, and will also form the basis on which I could later design a Meal Plan for you, should you want.
Cost: $510 (GST-exempt).
ii. IBS-Package
For those with MCAS or hEDS, when it is unclear which foods are contributing to a person’s symptoms, or the foods seem unrelated, I will recommend the IBS-Package as the next step (instead of a low-FODMAP diet).
The heart of the IBS-Package is the Time-Food-Time-Symptom (TFTS) Journal, which enables me to identify consistent patterns between the foods that you eat and your specific symptoms. These patterns form the basis for my recommendations about which foods to avoid to help manage your symptoms, and would form the basis on which I could later design a Meal Plan, should you want.
Cost: $510 (GST-exempt).
(Optional) Meal Plan for MCAS, hEDS & POTS
Once people feel better and have identified foods that trigger their symptoms, they often want a Meal Plan designed for them that puts it all together and supports their overall health goals.
Design of a Meal Plan for those with MCAS, hEDS, and/or POTS is provided with a Comprehensive Dietary Package, with the Complex Clinical add-on to cover the additional time required to design your Meal Plan while factoring in avoiding foods identified through previous services as triggers for symptoms. If needed, add-on nutrition education for Functional Dyspepsia is available at a lower rate with the package than when taken as a stand-alone Clinical Nutrition Appointment.
Complex Clinical Nutrition Appointments for MCAS, hEDS and POTS
Complex Clinical Nutrition Appointments are billed on a per-appointment basis and are available for:
Cost: $170 (GST-exempt). Appointments are 50 minutes, with 10 minutes for reviewing clinical data, answering questions, and discussing options for the next stage of care.
How to Get Started?
Questions About Booking, Billing, or Extended Benefits?
Our FAQ page answers questions about booking, billing, and payment options, appointment confirmations, extended benefits claims, and much more. If you have questions that are not answered there, reach out through the Contact Us form at the bottom of that page.
Meet to Discuss Symptoms & Services
The first step in service for those with hEDS, MCAS, or POTS is to book an Initial Consultation.
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Want to dive into the research?
Before we meet, you might find these articles of interest.
Questions and Answers
Q: Why is an Initial Consultation required for hEDS, MCAS, and POTS services?
A: Approximately 60% of individuals with these conditions are diagnosed with more than one of them. Because the symptoms of hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) are different for each individual, there is no set package. An Initial Consultation enables us to meet to discuss your specific symptoms and prioritize your digestive or systemic triggers.
Q: How does a “both sides of the clinical desk” perspective affect your care?
A: I was diagnosed with Mast Cell Activation Disorder (MCAD) nearly a decade ago and have first-degree family members living with hEDS and POTS. As a result, navigating these overlapping complex conditions is a daily reality, not only an academic interest. Understanding these disorders from both sides of the clinical desk enables me to provide empathetic, practical, and highly realistic strategies based on the current literature and lived experience.
Q: Can nutrition support manage histamine intolerance or mast cell flares safely?
A: Yes. Structured elimination of bioactive amines, including histamine, can help reduce total systemic mast cell load and reduce symptoms, and is taught as a Complex Clinical Nutrition Appointment.
