Nausea Flare Ups and Triggers in Ehlers-Danlos Syndrome, MCAS, and POTS

People living with Ehlers-Danlos Syndrome (EDS), particularly the hypermobile type (hEDS), often struggle with nausea, especially during flare-ups or after consuming trigger foods. This can be a major challenge in managing the day-to-day symptoms of EDS. While many of the musculoskeletal and pain-related symptoms of EDS are widely recognized, the gastrointestinal (GI) symptoms, including nausea, are just as debilitating. Understanding the potential causes of nausea in EDS is key to managing it more effectively, especially when common activities like eating or drinking water can trigger discomfort.

Why Does Nausea Occur in EDS?

Nausea in EDS is often linked to a combination of factors, including GI dysmotility, dysautonomia, and mast cell activation syndrome (MCAS). The connective tissue abnormalities in EDS can affect the muscles and nerves of the GI tract, causing it to function improperly. As a result, the stomach and intestines may not move food through the digestive system at the correct speed, leading to delayed gastric emptying (gastroparesis), bloating, and nausea.

Delayed Gastric Emptying and GI Dysmotility:

In hEDS, delayed gastric emptying is common, leading to bloating, early satiety, and nausea. Gastroparesis, a severe form of delayed emptying, is rare but still observed in EDS​. The sluggish movement of the stomach may cause nausea, especially after eating meals, as the stomach struggles to process and move food through to the intestines. Symptoms like this often worsen during flare-ups, when overall body function, including digestion, is under stress.

Dysautonomia and Nausea:

Many people with EDS also have a form of autonomic dysfunction known as Postural Orthostatic Tachycardia Syndrome (POTS). This condition, where the autonomic nervous system fails to regulate functions like blood pressure and heart rate properly, can affect digestion as well. As the body struggles to regulate its internal processes, blood flow to the GI tract can be reduced, leading to nausea, particularly when standing or after eating​.

Mast Cell Activation Syndrome (MCAS):

MCAS is another common issue in EDS, causing the immune system to overreact to stimuli that would normally be harmless. Foods that are high in histamines, such as aged cheeses or fermented products, can trigger MCAS, leading to the release of chemicals like histamine and resulting in nausea, abdominal pain, and flushing​​. Interestingly, even water has been reported as a nausea trigger in some individuals with MCAS, possibly due to unpredictable mast cell reactions​.

Dr. Leonard Weinstock, a leading expert on MCAS, has highlighted that MCAS can also manifest in the GI tract through bloating, distension, and fluid build-up in the intestines due to chemical releases. These symptoms can be both local and systemic, further complicating nausea management in EDS patients.

Nausea Triggers in EDS: Food and Water

Many people with EDS report that specific foods trigger their nausea. These trigger foods can vary, but common culprits include:

• Histamine-rich foods: Aged cheeses, processed meats, alcohol, and fermented products may provoke nausea in individuals with MCAS.
• High-fat or high-fiber foods: These can exacerbate GI motility issues, leading to delayed stomach emptying and nausea.
• Processed or allergenic foods: In addition to high-histamine foods, other processed or allergenic items may be poorly tolerated, leading to digestive distress.
• Water: Drinking water might seem like a benign activity, but some people with EDS find that it causes nausea, particularly if they have MCAS or Small Intestinal Bacterial Overgrowth (SIBO). In cases of SIBO, bacteria in the small intestine ferment food (and even water), leading to bloating and nausea​. Both conditions disrupt normal GI function and can make even hydrating a challenging task.

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Management Strategies for Nausea in EDS, MCAS, and POTS

Addressing nausea in EDS requires a multi-pronged approach:

Dietary Changes:

• Low-histamine diet: For those with MCAS, avoiding histamine-rich foods may reduce nausea. Keeping a food diary to track potential triggers can help.
• Smaller, more frequent meals: Eating smaller portions can help ease the burden on the digestive system, reducing the likelihood of nausea due to gastroparesis.
• Hydration adjustments: Sipping small amounts of water throughout the day rather than large volumes at once can help prevent nausea. Electrolyte drinks may be better tolerated.

Medications:

• Antihistamines: Medications like Cetirizine or Loratadine may help control symptoms of MCAS that contribute to nausea.
• Prokinetic agents: For those with delayed gastric emptying, medications that promote gut motility can be helpful.
• Antibiotics or herbal antimicrobials: In cases of SIBO, treating the bacterial overgrowth can reduce nausea and bloating.
• Low Dose Naltrexone (LDN): Dr. Weinstock frequently prescribes LDN for its ability to reduce inflammatory cytokines and help stabilize mast cells. About 60% of his patients have reported significant improvements in their symptoms, including nausea.
• Ondansetron: This is a commonly prescribed anti-nausea medication that may offer relief during severe bouts of nausea.
• Cromolyn Sodium: Often used in MCAS management, this medication helps by stabilizing mast cells and can be particularly helpful for those with extreme food sensitivities and nausea triggers.

Managing POTS:

• Improving autonomic function through increased salt intake, wearing compression garments, and medications such as fludrocortisone can help manage POTS symptoms, which often include nausea​.

Lifestyle Adjustments:

• Avoid lying down immediately after meals to improve digestion.
• Use physical therapy or gentle exercises to improve overall body function, which can indirectly support digestion.

Investigating Underlying Causes: SIBO and MCAS

If nausea persists despite lifestyle changes and medication, it may be essential to investigate underlying conditions like Small Intestinal Bacterial Overgrowth (SIBO) and Mast Cell Activation Syndrome (MCAS), both of which are common in EDS and can significantly impact gastrointestinal health.

• SIBO occurs when bacteria that normally live in the large intestine grow excessively in the small intestine, leading to bloating, gas, nausea, and malabsorption of nutrients. The bacterial overgrowth ferments undigested food, producing gas and other byproducts that cause digestive discomfort. This can also slow down gastric motility, further exacerbating nausea and bloating. To diagnose SIBO, doctors often use hydrogen breath testing, which measures the amount of hydrogen and methane produced after consuming a sugary drink. Abnormally high levels suggest bacterial overgrowth in the small intestine. Once diagnosed, treatment for SIBO typically includes a combination of antibiotics like rifaximin or herbal antimicrobials, and in some cases, dietary changes like a low-FODMAP diet.
• MCAS, on the other hand, involves the overactivity of mast cells, which release chemicals like histamine in response to triggers that are normally harmless, such as certain foods, stress, or environmental factors. These chemical releases can cause a range of symptoms, including nausea, flushing, and abdominal discomfort. MCAS can be difficult to diagnose, as symptoms often overlap with other conditions. However, specialized blood tests—such as measuring serum tryptase levels, 24-hour urinary methylhistamine, or prostaglandin metabolites—can help confirm MCAS. Additionally, a careful clinical evaluation of symptoms and triggers is crucial. Once identified, management may include antihistamines, mast cell stabilizers (such as cromolyn sodium), and dietary modifications to avoid triggers like histamine-rich foods.

Exploring these underlying causes can help tailor treatments more effectively, reducing nausea and improving overall quality of life for people with EDS. A thorough evaluation of GI symptoms, combined with targeted testing for SIBO and MCAS, can provide clarity and open up new avenues for treatment.

Conclusion

Nausea is a common but complex issue in EDS, often exacerbated during flare-ups or after eating trigger foods. By addressing underlying conditions like delayed gastric emptying, dysautonomia, MCAS, or SIBO, and adopting appropriate dietary and lifestyle changes, many people with EDS can find relief. For those struggling with nausea even after drinking water, investigating these conditions may offer new avenues for treatment. A combination of medications, dietary adjustments, and hydration management can make a significant difference in managing this challenging symptom.

Understanding the interconnectedness of MCAS, POTS, and GI issues can empower EDS patients to take proactive steps toward reducing nausea and improving their quality of life.

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