POTS syndrome is linked to gluten and may also be connected to autoimmune disorders. POTS, a form of dysautonomia, has also been identified as a common symptom of long-haul COVID. Removing gluten from the diet has been shown to alleviate symptoms for some people with POTS. The connection between gluten and POTS was validated by research indicating a higher risk of POTS/dysautonomia in individuals with celiac disease or gluten sensitivity.

In my office, I repeatedly see a connection between POTS, celiac disease, and other gluten-related disorders. Let’s discuss this invisible, life-altering illness, including diet and lifestyle changes that may help people with POTS syndrome feel better.

The symptoms of POTS syndrome are often discounted by providers

• POTS occurs when there is dysfunction in the autonomic nervous system.
• The autonomic nervous system controls all of the things that happen “automatically” in our bodies, such as blood pressure, heart rate, and breathing.
• POTS is the most common autonomic disorder.
• Symptoms usually occur or worsen in the upright or standing position. We spend most of our lives upright, so you see how this can significantly impact someone’s life.
• Blood pressure can be low or high (more often low).
• Heart rate abnormalities are frequent but may not be noticed or normalized
• Symptoms may be mild, such as lightheadedness or fatigue, or so severe as to cause someone to lose consciousness.
• Symptoms often improve with hydration, age, and pregnancy.
• Women with POTS often say, “Pregnancy was the best I ever felt.”This may be due to the increase in blood volume that occurs in pregnancy, i.e., “the tank is more full.”

People with POTS are commonly misdiagnosed with other conditions, such as chronic fatigue syndrome, fibromyalgia, anxiety, or ADD. They appear outwardly normal and healthy and can experience years of frustration from medical professionals who attribute their symptoms to various maladies or psychological issues.

Symptoms typically come and go. People with POTS have good and bad days

People with POTS may experience one or many of the following symptoms::

• Symptoms worsen after prolonged periods of standing or sitting, in warm environments, and after eating. They are triggered by dehydration, stress, and exercise.
• A fast heart rate that goes up with standing
• Dizzy or lightheaded
• Palpitations/irregular heartbeat
• Fatigue
• Brain fog/Cloudy thinking
• Weakness
• Headache
• Anxiety
• Shortness of breath
• Nausea
• Digestive symptoms- such as constipation or gastroparesis
• Balance problems
• Muscle pain
• Cold hands and feet
• Exercise intolerance- fatigue with mild exercise
• Pelvic congestion syndrome
• Discoloration or mottling of legs with standing upright*
• Muscle twitching
• *This list is not all-inclusinve

A research paper discusses the possibility of POTS being autoimmune in nature. If POTS is autoimmune, it may be more common in people with other autoimmune diseases such as celiac disease. I am not suggesting that celiac disease or gluten sensitivity is the cause of all cases of POTS. They may be two of several possible reasons for it to occur.

POTS syndrome is challenging for both patients and clinicians. There are treatment centers at several major universities (see list below) dedicated to treating POTS and related autonomic (nervous system) disorders. There is a discussion amongst experts that POTS may be a common endpoint for a variety of illnesses. Thoughts are it may explain many cases of chronic fatigue syndrome.

The first step in diagnosing POTS syndrome is considering it as a diagnosis.

Ehler’s Danlos and MCAS are associated with POTS

It is estimated that about 50% of people diagnosed with POTS have hypermobile joints. There may be a connection between Ehler’s Danlos Syndrome and POTS. It is common for POTS to run in families, and there is most likely a genetic component. Many people describe the onset of symptoms after a viral illness (mononucleosis is a common trigger), pregnancy, or trauma. Most of the time, however, cause the cause is unknown.

It is also seen in people with mast cell disorders including MCAS.

The impact of POTS syndrome on a person’s life can be severe

To illustrate the significant impact of POTS on people’s lives, I’d like to share some stories of my patients. All of them had either celiac disease or gluten sensitivity and were eventually diagnosed with POTS.

Adeline, aged 12, was so tired that she couldn’t even participate in physical activities; running even one time around a baseball diamond was impossible. Her fatigue affected her concentration, grades, and daily life, making it a struggle to get to school and nearly impossible to make it through the day.

Jace, aged 17, experienced dizziness and palpitations when standing for more than a few minutes. His legs ached, and showers exacerbated his pain. Standing in line became intolerable, and his legs would turn purplish, forcing him to sit down frequently due to exhaustion.

Ruby, aged 37, battled constant brain fog and low blood pressure despite being told by her doctor that it was “healthy.” She felt terrible.

Despite the wide range of ages and symptoms, all these patients share one common factor: POTS.

Gluten can make POTS symptoms worse

A study found a significant link between celiac disease and autonomic dysfunction, with 2.4% of autonomic dysfunction patients having biopsy-proven celiac disease, double the general population rate. Another study indicated POTS patients have a higher risk of celiac disease and gluten sensitivity, while 56% of celiac patients show autonomic nervous system abnormalities.

Should we consider celiac disease or gluten sensitivity in all POTS cases? Although removing gluten from the diet has improved symptoms for some patients, it doesn’t always provide complete relief. Could eliminating gluten completely resolve POTS symptoms? The altered microbiome in celiac disease might contribute to POTS-like symptoms. Could probiotics help with POTS? Additionally, could other food sensitivities linked to celiac disease play a role? Answering these questions through future research could significantly impact patient care.

DIet, water, and lifestyle changes can significantly improve symptoms.

The following lifestyle and dietary modifications can be useful for managing POTS. Prescription medications may be needed in addition to lifestyle changes, but their use is beyond the scope of this article.

Water And Food

Proper hydration is at the forefront of treatment.

For individuals with POTS, it’s recommended to consume at least 2 liters of water daily and ensure adequate salt intake, typically 3-5 grams per day. Salt tablets are often used to supplement salt intake and maintain fluid balance.

Dietary adjustments are crucial in managing POTS. Consuming small, frequent meals can alleviate symptoms after eating, while removing dairy from the diet may be beneficial. Decreasing daily carbohydrate intake is often helpful as well.

Caffeine may have varying effects on POTS patients, improving symptoms for some while worsening them for others. The relationship between gluten and POTS is still emerging, and further studies are needed to explore this connection fully.

Anecdotal evidence suggests that removing other food items such as eggs and yeast may improve POTS symptoms for some individuals, but this varies on a case-by-case basis and requires an elimination diet for confirmation. Further research into the effects of specific foods and the potential benefits of probiotics on the microbiome in POTS patients would be valuable.

Lifestyle Modifications

1. Hydration
2. Avoid prolonged sitting or standing
3. Avoid warm environments
4. Minimize medications that dilate blood vessels
5. Assure adequate salt intake
6. Avoid alcohol-it worsens symptoms
7. Use pressure garments, such as support hose
8. Assure adequate, regular sleep. Elevate the head of the bed while sleeping.
9. Avoid stressful situations as much as possible

Exercise

Exercise is a cornerstone of long-term improvement. At the start of treatment, patients often begin physical therapy to enhance exercise tolerance. Initially, only 1-2 minutes of exercise may be manageable. Lifestyle modifications, along with supplements or medications if needed, are crucial to gradually increase exercise tolerance. The objective is to progressively boost exercise while reducing medication. In the long term, exercise helps sustain vascular tone and alleviate symptoms, often leading to the reduction or cessation of medication use.

Posture Adjustments

1. Sit in a lower chair or with knees in a knee-chest position
2. Squat rather than stand if possible
3. Stand with legs crossed and contract muscles while standing
4. Bend forward when possible, for example, on a shopping cart if shopping

Treat Associated Conditions

Certain conditions such as asthma, food intolerances, pain, pelvic congestion, anxiety, migraines, and infections can worsen POTS symptoms. They should be addressed immediately if they occur.

Medications

Various medications are utilized in POTS treatment, including those that boost blood volume, act as stimulants, or enhance vasoconstriction. Details regarding specific medications and their usage exceed the scope of this article. For further information on medications, please click here

Vitamins And Supplements

Several supplements have been used as adjunctive treatment to lifestyle modifications. These should only be used under the guidance of your treating physician. They may include butcher’s broom, magnesium, licorice root, magnesium, potassium magnesium, carnitine, and Co-Q10 and adrenal supplements.

Decrease Stress

Because stress exacerbates symptoms of POTS, the use of a daily relaxation technique is beneficial. Possibilities include meditation, journaling, yoga, tai chi, and breathing or muscle relaxation exercises.

The first step in diagnosing POTS is thinking of it as a possibility

After patients understand what they need to do, they can begin to approach it strategically. With guidance and treatment, they can get better. Because this is a challenging diagnosis. I believe it is important to remember that and reinforce that idea by connecting newly diagnosed POTS patients with those who have improved.

You might be unfamiliar with POTS until now, but perhaps you know someone grappling with similar symptoms and seeking answers. POTS could be a potential explanation, and this insight might be transformative for them. I trust this article will help drive further research into the potential connection between POTS and diet and other treatment avenues for this complex illness.

• All names in this article have been changed to protect privacy.

National Institutes of Health
John’s Hopkins Chronic Fatigue Clinic  PDF by Dr. Peter Rowe with additional resources
Dysautonomia information network – Patient Support Network
Dysautonomia International
Dysautonomia Youth Network of America

POTS Treatment Centers

Children’s Hospital of Pennsylvania
Cleveland Clinic
Mayo Clinic
Stanford University
Vanderbilt University
Autonomic Disorders Consortium

Videos About POTS

What is POTS? Dysautonomia International
Dr. Boris; Children’s Hospital of Pennsylvania

Research On POTS And Gluten

1. Disturbances of autonomic nervous system activity and diminished response to stress in patients with celiac disease
2. Autonomic imbalance in celiac children
3. Autonomic neuropathy and coeliac disease
4. Autonomic dysfunction and upper digestive functional disorders in untreated adult coeliac disease

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