Postural orthostatic tachycardia syndrome graphic

Key Topic

In this episode, we explore the often-overlooked link between nutrition and conditions like hyper-mobility, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS). We are going to break down practical, evidence-based strategies to help manage symptoms and enhance quality of life.

Hyper-Mobility 

  • Hyper-mobility refers to an unusually high range of motion in one or more joints. Some individuals may experience no issues, others can have symptoms like pain, instability, or frequent injury. 
  • It is essentially a group of disorders affecting collagen production.
  • Hyper-mobility does exist on a spectrum and is classified into several subcategories depending on its cause, associated symptoms, and underlying conditions.
  • EDS – Ehlers-Danlos Syndrome (EDS):
  • Symptoms: Skin hyper-extensibility, fragile tissues, and joint instability.
  • Subtypes include hypermobile EDS (hEDS), vascular EDS, and classical EDS.

We will cover some general dietary considerations for hyper-mobility and EDS although the majority of the complex clients I see, have 1 or both of the following co-occurring conditions. 

Mast Cell Activation Syndrome (MCAS) 

Mast Cell Activation Syndrome (MCAS) 
  • Is a condition where certain cells in your body, called mast cells, release too much histamine, inappropriately. 
  • Mast cells are part of your immune system, and their job is to help protect you from infections or allergens. 
  • But, in MCAS, these cells become overactive and release histamine even when they shouldn’t, leading to a variety of symptoms including:
  • Itchy skin, hives, rashes
  • Gut symptoms – dx, constipation, nausea, belching, vomiting, discomfort etc
  • Acid reflux
  • Bone and muscle pain 
  • Headaches & migraines
  • Swallowing problems 
  • Anaphylaxis 
  • Fatigue & brain fog
  • Anxiety, panic attacks
  • Nasal itching, congestion 
  • Pelvic pain, heavy period cramps, can have crossover with PMDD.
  • Worsening of issues associate with neurodivergence.

POTS 

POTS (Postural Orthostatic Tachycardia Syndrome) seated to standing symptoms
  • POTS (Postural Orthostatic Tachycardia Syndrome) is a form of dysautonomia, and a disorder of the autonomic nervous system, which controls involuntary bodily functions like heart rate, blood pressure, digestion, and temperature regulation.
  • In POTS, the body struggles to properly regulate blood flow and blood pressure when moving from a seated or lying position to standing. This causes a rapid increase in heart rate (tachycardia) and a variety of symptoms.
  • POTS and MCAS often co-exist and can have a bi-directional impact on one another.

HYPERMOBILITY TRIAD 

Nutrition Considerations For Hyper-mobility 

  • In isolation, without MCAS and/or pots present.
  • Overall well-balanced diet 
  • Anti-inflammatory style diet 
  • Focus on key nutrients for collagen synthesis – protein, zinc, copper, vitamin C
  • Focus on key nutrients for bone & joint health – Calcium, vitamin D, omega 3, magnesium 
  • Collagen supplements don’t seem to be helpful, although adequate protein intake is recommended for a range of obvious reasons including having adequate amino acids for collagen production.
  • Chronic constipation can be an issue.
  • Constipation is common; a recent study found 73% of patients with hEDS/HSD (hyper mobility spectrum disorders) had constipation versus 16% of controls.
  • The underlying cause of constipation in hEDS/HSD is multifactorial and includes disorders of the gut brain axis, delayed motility, small intestinal bacterial overgrowth, pelvic floor issues, and a reduced sensitivity at the end of the gut. 
  • Individualised strategies to keep regular (all the same stuff we’d normally recommend for constipation).

Nutrition Considerations For MCAS

  • A low histamine diet can help people with MCAS because it reduces the amount of histamine coming from food, which lowers the overall histamine load in the body. 
  • Since people with MCAS already struggle with too much histamine being released from their mast cells, eating foods low in histamine can prevent symptoms from getting worse.
  • There are 3 major groups of foods that you would want to limit on a low histamine diet.
    • Wheat/gluten, dairy – particularly aged & fermented, pickles/fermented veg, fermented soy (soy sauce), certain veg/fruit 
    • Avoid histamine liberators: Some foods don’t contain much histamine but trigger the release of histamine from mast cells.
    • Alcohol, buckwheat, avo, tomato, kiwi, citrus, chocolate/cocoa, carob, yeast, cashews, walnuts 
    • Avoid DAO inhibitors: DAO (diamine oxidase) is the enzyme that helps break down histamine, especially from food.
    • Alcohol, black tea, chocolate, energy drinks, some medications 
    • If you want more information, I recommend checking out the SIGHI list (Swiss Interest Group Histamine intolerance).
animal meats
  • Animal protein
  • Aim to use meat, fish and poultry on the day of purchase if fresh.
  • Otherwise purchase all of these frozen if possible.
  • Defrost all meals in the fridge rather than at room temperature to reduce excess histamine breakdown. Or even better, cook animal protein from frozen.
  • Leftovers Freeze animal protein containing leftovers within 12 hours of cooking (The longer these are left in the fridge, the more histamine bacteria produce)
  • Some people may tolerate leftover vegetable/vegetarian dishes up to 24-48hrs old
  • Discard frozen leftovers after 2 months.
  • Level of restriction will depend on overall histamine tolerance, this can ebb & flow.

  • Other considerations:
    • DAO enzymes
    • Anti-histamines (H1 & H2) 
    • Mast cell stabilisers 
  • Micronutrient deficiencies:
    • Micronutrients are crucial for keeping all processes happening in our body. In particular zinc, vitamin c, b6, b12/folate, vitamin d and magnesium can all play a role in mildly stabilising mast cells & managing inflammation.
    • Having a well-balanced, nutrient-dense diet and supplementing to fill gaps should be a focus for managing MCAS
  • Microbiome support:
    • Eating for a healthy gut microbiome can be just as impactful as lowering histamine intake on a low histamine diet. An imbalanced gut microbiome will produce excess histamine, which is more likely to travel around the body with higher gut permeability (leaky gut).
    • Also, our DAO enzyme which helps break down histamine is mainly found along the gut lining. Low-grade inflammation at the gut lining (from histamine, inflammatory foods, overgrowth of unhelpful gut bacteria) reduces DAO levels, worsening histamine overload.

Managing POTS

  • Managing POTS (Postural Orthostatic Tachycardia Syndrome) in someone with MCAS (Mast Cell Activation Syndrome) requires a bit of holistic approach that factors in both the overactive mast cells and the blood flow regulation issues of POTS. 
  • Anti-histamines, mast cell stabilisers and compression garments can also be helpful.

Symptoms 

symptoms of POTS

Management 

  • Increase Salt and Fluids: Consuming more salt and drinking plenty of water helps increase blood volume, which can reduce dizziness and improve blood flow
    • Fluid: Aim for 35-40mls of water per kg bodyweight per day (eg. 75kg person so consume >2.6L fluid daily). If exercising and sweating a lot, it makes sense to go even higher. 
  • Sodium – For most people with POTS, common prescribed sodium targets can range between an additional 4,000mg – 10,000mg (2-5tsp salt) on top of what you have in your ‘normal diet’. 
  • Sodii – a great electrolyte supplement really high in sodium, salt tablets, added salt to food, salt in water with cordial etc 
  • Note: This will be different for everybody – check in with your GP, cardiologist or dietitian. Some POTS patients may have to limit sodium intake.
  • Frequent, Small Meals: Large meals can cause blood to pool in the digestive system, which worsens POTS symptoms. Eating smaller, frequent meals can help keep blood pressure more stable, especially if the meals are low-histamine and balanced in nutrients.
  • Temperature Control: POTs can impact body temperature regulation. And heat can trigger both POTS and MCAS symptoms. It’s important to stay cool: Avoiding hot environments and using things to stay cool such as fans or even cooling vests can reduce the likelihood of a flare-up.
  • Sleep Management: Good sleep hygiene is crucial, as poor sleep can exacerbate both POTS and MCAS. Ensure a regular sleep schedule, a comfortable environment, and manage any symptoms that might disrupt sleep.

Summary

Conditions like hyper-mobility, POTS, and MCAS often overlap, adding to the complexity of management. Start with a balanced, anti-inflammatory diet, address micronutrient deficiencies, and prioritise sodium and fluid for POTS. Building a healthcare team such as a dietitian, rheumatologist, and exercise physiologist is also suggested as the key to managing these interconnected conditions effectively.

Relevant Blogs/Research

Relevant Studies:

Hypermobile Ehlers–Danlos syndrome and disorders of the gastrointestinal tract: What the gastroenterologist needs to know