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Gluten and POTS

A condition that causes fatigue & dizziness could tie into celiac disease & gluten sensitivity.

Once healthy, vibrant and energetic, Lola, age 28, was now chronically ill. This happily married, Silicon Valley IT consultant had such profound fatigue that she could barely make her bed in the morning. Standing for any prolonged period of time caused her legs to ache and her head to spin. She felt awful. Yet despite multiple doctor visits and numerous medical tests, no one knew why.

The cause of Lola’s distress turned out to be Postural Orthostatic Tachycardia Syndrome (POTS), a condition that affects the flow of blood through the body, resulting in fatigue, anxiety and dizziness when standing upright. The symptoms go away after lying down.

This disorder remains largely unknown to much of the public. However, I frequently see people in my office with this problem and its prevalence seems to be increasing.

Recent research suggests that POTS is autoimmune in nature. And according to a study published in the European Journal of Gastroenterology & Hepatology in December 2016, there’s a potential association with POTS and celiac disease and gluten sensitivity. In the study, UK researchers found that people with POTS had a higher rate of celiac disease and self-reported gluten sensitivity. Four percent of study participants with POTS had celiac disease, compared to 1 percent of the general population.

POTS may be more common in those with celiac disease or other autoimmune disorders because having one autoimmune disease places you at higher risk for developing a second. Given the rise of autoimmune diseases across the population, we may be seeing the tip of the iceberg for this little-known condition.

More About POTS

POTS occurs when there is dysfunction of the autonomic nervous system, which controls all of the things that happen “automatically” in our body, like blood pressure, heart rate and breathing. It’s the most common form of a class of ailments known as autonomic disorders/dysautonomia.

Symptoms usually occur or worsen when a patient is in the upright or standing position. They occur because the blood vessels don’t work properly to pump the blood back to the heart and brain, causing blood to pool in the feet and legs. Because of this, people with undiagnosed POTS may sit or squat frequently, elevate their legs while sitting and prefer to lie down instead of sitting when they read or work. Subconsciously adapting, they may not even know they do these things.

Symptoms may be mild, such as fatigue or dizziness, or severe enough to cause fainting. Improvement occurs 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 during pregnancy.

Because symptoms typically come and go, people with POTS have good and bad days. They may feel worse in warm weather and after eating or exercising. Dehydration and stress can also be triggers.

Outwardly appearing normal and healthy, people with POTS can experience years of frustration as well-meaning medical professionals incorrectly attribute their symptoms to various maladies or psychological issues. Common misdiagnoses include chronic fatigue syndrome, fibromyalgia, anxiety and ADHD.

POTS can be debilitating for the people who have it, significantly impacting their lives on a day-to-day basis. Many lose their jobs or relationships as they struggle with the fatigue and other symptoms.

Cause & Treatment

The cause of POTS is unknown but many people describe its onset after a viral illness, pregnancy or trauma. It may be related to connective tissue disorders and loose/hypermobile joints, as these conditions can prohibit blood vessels from working normally. There is likely a genetic component; POTS commonly runs in families.

Individuals might undergo several tests to help diagnose POTS, including heart rhythm testing, heart function testing, blood tests to rule out other conditions, a standing test that measures heart rate and blood pressure after standing upright, and a tilt table test. In the tilt test, the patient is secured to a table and then subjected to various angles of tilting to see if being held upright provokes a decrease in blood pressure, an increase in heart rate or dizziness.

Diagnosis of POTS is the first step to wellness, as it introduces a treatment plan. Proper hydration, lifestyle modifications and exercise are at the forefront of treatment. It’s recommended that patients drink two liters of water daily, a simple treatment that typically shows immediate results.

Exercise is the cornerstone of long-term improvement; it helps maintain vascular tone and minimizes symptoms. While exercise tolerance is often low initially—walking for even a few minutes can feel like a chore—stamina improves with patience and perseverance and often allows a person to reduce or discontinue medication.

Compression stockings (or pants) can be a quick, inexpensive avenue to rapid improvement. Adequate salt intake is important; salt tablets are used to help maintain fluid status. Patients are told to avoid prolonged sitting or standing, to elevate the head of their bed when sleeping and to minimize medications that dilate blood vessels. Daily relaxation techniques are helpful, as is avoiding alcohol.

Dietary changes, such as eating small, frequent meals, removing gluten and dairy and decreasing total daily carbohydrate intake, are often helpful, depending on the patient. Caffeine may aid some POTS patients and worsen symptoms in others. Anecdotally, I’ve seen improvement in symptoms with the removal of other foods, such as eggs and yeast, but this is on an individual basis and can only be determined with an elimination diet.

Certain postures can help ease dizziness. Sit in a lower chair or with your knees to your chest. When standing, cross your legs and contract your leg muscles. When grocery shopping, bend forward and lean on the cart.

Even with all these interventions, prescription medications may be required in some cases.

The Role of Gluten

A 2014 study showed that 56 percent of those with celiac disease have some abnormality in their autonomic nervous system. Thus, POTS and other autonomic disorders should be considered if symptoms continue after initiation of a gluten-free diet. In my patients, removing gluten from the diet typically improves symptoms—but not completely.

Many questions remain about the role of gluten in POTS. Can gluten directly cause symptoms? Are there cases where gluten elimination results in complete remission? Does the altered microbiome in celiac disease create symptoms consistent with POTS? If so, could certain probiotics help? Do other food sensitivities play a role in POTS? If future research finds answers to these questions and others, the results would impact many patients.

Several major universities now have centers dedicated to treating POTS and related nervous system disorders. For more information, visit the Dysautonomia International website.

Amy Burkhart, MD, RD, is a board-certified emergency medicine physician and a registered dietitian. She is a clinical expert in celiac disease and gluten sensitivity and specializes in integrative medicine.