Five to 12 percent of people with Addison’s disease, a chronic adrenal insufficiency, also have celiac disease.
Fatigue wasn’t the right word. At age 13, Taylor Miller was so profoundly exhausted that he couldn’t wake up in the morning to get to school. He regularly slept through his alarm and missed classes. When he did wake up—often around noon—he couldn’t get out of bed, let alone climb a flight of stairs.
“I was pretty sick and miserable. I spent an entire summer in bed,” says Miller, now 20, founder of the popular GlutenAway blog.
Miller and his mother didn’t know what was wrong, nor did his primary care doctor. A year earlier, Miller had been diagnosed with celiac disease, so at first he assumed his symptoms were related to that. But even on a gluten-free diet, his fatigue continued to worsen. Eventually, he ended up in the emergency room of a university hospital center where he was promptly admitted.
Ten days later, Miller’s medical team finally found the answer through a cortisol test. An endocrinologist broke the news: Miller’s adrenal glands were not producing cortisol, an essential hormone that regulates energy throughout the body. The medical team had never seen adrenal insufficiency so severe.
Adrenal Insufficiency & Celiac Disease
Adrenal insufficiency happens when the adrenal glands are underactive, leading to critical hormone changes in the body. These hormones (including cortisol and aldosterone) regulate the body’s blood pressure, metabolism and stress response, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
In autoimmune primary adrenal insufficiency, a form of Addison’s disease, the adrenal glands fail to produce cortisol due to a misdirected attack of the immune system that destroys adrenal cells. Secondary adrenal insufficiency occurs due to a signaling problem with other endocrine glands.
Five to 12 percent of people with Addison’s disease also have celiac disease, according to multiple studies. Unfortunately, people with celiac disease are at higher risk for other autoimmune disorders, including Addison’s disease.
“When you have one autoimmune disease, you tend to develop others,” says Richard Auchus, MD, PhD, an endocrinologist at University of Michigan Medicine.
Specific genes can put people at risk. Studies show that the HLA-DQ2 and HLA-DQ8 genes associated with celiac disease are also associated with Addison’s disease. At least two Scandinavian studies have recommended that patients with Addison’s disease be screened for celiac disease. One of these, a Norwegian study, suggested that undiagnosed celiac disease may be a cause of failure of hormonal treatment in those with Addison’s disease. Swedish research reported a “significant positive association” between children and adults with celiac and Addison’s disease and recommended that celiac patients have “increased awareness of adrenal insufficiency.”
People with Addison’s disease have to take the equivalent of cortisol and aldosterone daily in tablet form. This treatment is usually enough to keep their hormone levels stable. However, Auchus says that people can go into potentially fatal “adrenal crisis,” which happens most commonly due to gastrointestinal illnesses that throw off the body’s fluid balance and prevent the patient from swallowing their pills. An adrenal crisis causes the blood pressure to drop dangerously low and can make the person incredibly lethargic, mentally confused or unconscious. Celiac patients who also have Addison’s disease should be especially aware of this when they experience gastrointestinal complications.
Adrenal crisis has another problem: Emergency responders are frequently unfamiliar with Addison’s disease because it is rare (40 to 60 people out of 1 million) and they typically don’t stock life-saving hydrocortisone shots. That’s why people with Addison’s disease are encouraged to carry their own emergency injection kits and medical identification in case of emergency.
“People still do die of adrenal insufficiency. The diagnosis should not be taken lightly,” Auchus says. Fortunately, he adds, “adrenal insufficiency is a very rare disease. I see maybe one new patient every year.”
Making a Diagnosis
When Auchus suspects a patient has adrenal insufficiency, he follows diagnosis and treatment guidelines set by the Endocrine Society. He starts with a blood test that measures the patient’s cortisol and ACTH (adrenocorticotropic hormone) levels in the morning. Levels at that time of day should be high, activating the body to start the day.
“Your cortisol levels should be higher in the morning to help you get up, sort of a ‘hello,’ and then decrease throughout the day,” explains Holly Lucille, ND, RN, a naturopathic doctor in West Hollywood, California. “If you’re not producing enough cortisol, you start to feel horrible and your ability to respond to your environment and to stress decreases. You have a short fuse.”
Adrenal insufficiency can progress gradually through the years, Auchus says. Cortisol levels may decline over time. Most patients don’t seek a diagnosis until the later stages, when they start having symptoms, which include fatigue, muscle weakness, dizziness, joint and muscle pain, weight loss, anxiety, nausea and diarrhea. By the time they arrive at the endocrinologist’s office, those with Addison’s tend to have very small, atrophied adrenal glands.
“We don’t even know the natural history of this process because we almost never pick up people in the early stages,” Auchus says.
Miller’s adrenal glands aren’t small or damaged, as they would be if he had Addison’s disease. They function but something unidentified blocks his body’s signal to produce cortisol. Year after year, Miller’s endocrinologist presents his case to experts at an international endocrinology conference but, thus far, no one reports seeing anything like it.
“It’s an invisible illness,” Miller says. “People look at me and think I’m a perfectly healthy person—but I’m far from that on the inside.”
A Contested Theory
While most people are unfamiliar with Addison’s disease, many have heard of a condition called “adrenal fatigue,” an umbrella term for symptoms that include fatigue, mild depression, low stamina and brain fog, among others. Arizona-based naturopath and chiropractor James Wilson coined the term in 1998. But most physicians, medical associations and many integrative medicine practitioners don’t buy into the idea of adrenal fatigue. Auchus calls it “a scam invented based on no data.”
Lucille says the term adrenal fatigue isn’t medically accurate. “Your adrenals never actually fatigue or get tired,” she explains. Instead, the theory is that the system can get deregulated from prolonged stress.
According to the adrenal fatigue theory, this could impact people with celiac disease and gluten sensitivity because consuming gluten puts stress on the body, which calls the adrenal glands into action. When the body remains in a stress reaction for long periods of time, it takes a toll on the hormonal system; low blood pressure and low blood sugar can last for days or months and interrupt daily life, according to the theory.
But the body naturally produces more cortisol when under stress, which isn’t necessarily a problem, Auchus says. “If people have chronic diarrhea and are running low blood pressure because of that, then yes, that would make them produce more cortisol.” The same happens when people are significantly ill due to heart attack or a hemorrhage.
To diagnose adrenal fatigue, a provider might recommend a four-point cortisol/DHEA test, which assesses hormone levels in your urine or saliva four times throughout the day (before breakfast, lunch, dinner and bedtime). Most mainstream physicians, however, do not recommend the test, concerned that practitioners often over-interpret what look like abnormalities and call it adrenal fatigue.
“The worst thing you can do for a patient is give them a diagnosis of adrenal insufficiency when they don’t have it,” says Auchus.
Once Miller had the answer to what was ailing him, he began treatment and started to feel better. He now takes medication three times a day to regulate his cortisol levels. He also adjusted his lifestyle and overall outlook. He manages his schedule to keep his stress levels in check, prioritizing sufficient sleep, light exercise and taking time for himself each day.
“I feel a million times better than I used to,” he says.
Contributor Katie Scarlett Brandt writes about health, science and the environment. Follow her on Twitter at @katiehappens.