Giving Up Gluten
When Deb Nevergall changed her diet, she felt worse before she felt better. Was it gluten withdrawal?
[Updated June 1, 2015]
Deb Nevergall had just purchased an old Victorian home for her special-occasion tearoom and was working on the menu, which included cucumber sandwiches, scones with clotted cream and petits fours, when health troubles hit.
First, Nevergall’s teenage daughter, Jessica, was diagnosed with celiac disease after having suffered for years from painful stomach cramps, fainting episodes and mysterious anemia.
“I’d never heard of celiac disease,” says Nevergall of Findlay, Ohio. “Not many doctors in our town were familiar with it either.”
Once Jessica started on the gluten-free diet, she made a rapid recovery. Her stomach cramps disappeared almost overnight. In fact, Jessica was doing so well that Nevergall turned her attention to her own health complaints. In recent years, she had suffered from countless frustrating symptoms—weight gain, brain fog, headaches, arthritis, fatigue, upset stomach and bloating. Having learned that celiac disease is an inherited autoimmune condition that runs in families, she got tested.
When results from the blood test came back negative, Nevergall admits she was relieved that she wouldn’t have to give up her favorite foods. But over time, her symptoms, once just annoying, seemed to be worsening, affecting her mood and energy level. She was becoming depressed.
“I looked sickly and worn-out and felt almost unrecognizable to myself. At that point, I was ready to do whatever it took to regain my health,” she says.
Over the next few months, Nevergall saw several more physicians and repeated the testing, this time with a small bowel biopsy, considered the gold standard for diagnosing celiac disease. Results revealed no evidence of the condition.
“I knew there was a root cause for my mounting health problems. I just wanted to find it,” she says, frustrated.
Given her daughter’s celiac diagnosis and her own ongoing malaise, Nevergall wondered if she might have some sort of sensitivity to gluten, even if she didn’t have celiac disease. Nagging suspicion prompted her to read up on gluten intolerance. Many of her symptoms—stomach upset, bloating and brain fog, in particular—fit the profile for gluten sensitivity. She consulted her doctor. Should she give the gluten-free diet a try?
Celiac experts strongly discourage anyone from going gluten free before being thoroughly tested for celiac disease. The reason is that being on the gluten-free diet leads to negative test results. “Once patients are on the diet for an extended length of time, it’s almost impossible to clarify the diagnosis and help the patient. We have limited tools at that point,” says Stefano Guandalini, M.D., medical director of the University of Chicago Celiac Disease Center.
Yet in a case like Deb Nevergall (i.e, a person who has celiac-like symptoms, a first-degree relative with the disease and negative results from a blood panel and biopsy), removing gluten from the diet and observing symptom changes can be the next logical step. Nevergall’s doctor was on board with the idea and so she decided to give the diet a try.
For Nevergall, going gluten free meant more than just a dietary adjustment. Nearly everything on the menu at her Victorian tearoom would now be off limits. Unable to sample new recipes and taste-test at will, she wasn’t sure she could pull off the new business venture—not to mention withstand the constant temptation. So she put her entrepreneurial plans on hold.
Feeling Faint ††
Just days after going gluten-free, Nevergall noticed she was dizzy. It started as a vague sense of lightheadedness that quickly escalated until it became almost debilitating.
"I was unsteady just walking around the house,” she says. Nevergall’s husband, Dar, had to help her out of bed and guide her on the stairs. Even when she sat quietly, she would feel woozy and notice that her vision would start to fade.
“I was afraid I’d pass out. It’s a horrible feeling because you don’t know what’s going to happen from moment to moment,” she says.
She also experienced strange, difficult-to-describe sensations in her brain. “It was the oddest thing, like a mild electric current running across my scalp and brain.”
With unremitting dizziness and the distracting sensations, Deb stopped driving and didn't get out much. “I stayed home and relied on my husband to take care of a lot of the cooking, laundry and household chores.”
The curious new symptoms alarmed Nevergall even as the timing gave her pause. Could they possibly be linked to removing gluten from her diet? It seemed like a stretch yet the coincidence was striking. Pushing down her growing concern, she logged into various celiac blogs and support groups and was surprised to discover threads discussing a condition called ‘gluten withdrawal.’ It was a moment of eureka—and relief.
“It turns out others experienced similarly disturbing symptoms when they started the gluten-free diet,” says Nevergall. “I figured I was going through some kind of withdrawal as my body got rid of the gluten.”
According to the National Institute on Drug Abuse, ‘withdrawal’ is defined as the variety of symptoms that occur when addictive drugs or substances are reduced or stopped. For Nevergall, gluten withdrawal seemed like a plausible explanation for her strange symptoms. But in reality, is there such a thing?
A Controversial Call
Celiac medical experts give a nod to anecdotal reports of gluten withdrawal but point out there’s no scientific data or research that substantiates the condition.
Nothing in the medical literature supports a true gluten-withdrawal syndrome, says Guandalini. "It's hard to account for it." ††
Still, parents and patients who have experienced or witnessed gluten withdrawal contend that it is very real. So does Charles Parker, D.O., a psychiatrist who has treated numerous patients with food intolerances.
“If you’re looking for withdrawal symptoms in newly diagnosed celiac or gluten-sensitive patients, you’re likely to find them,” Parker says.
Symptoms can be highly diverse, he explains, ranging from neurologic (like Nevergall’s) to gastrointestinal (such as nausea, diarrhea, cramping or even extreme hunger), to psychiatric with mood disturbances, irritability, anxiety, depression or sleeplessness.
Parker suggests that gluten withdrawal may be related to an underlying addiction to gluten. He contends that some of his celiac and gluten-sensitive patients have been unknowingly addicted to gluten for years, craving the very foods that make them sick.
One theory is that digestive by-products of gluten–peptides (proteins) called gliadorphins–enter the blood stream more easily in people with leaky gut syndrome, a condition thought to contribute to celiac disease and certain other autoimmune conditions. When these peptides bind with opioid receptors in the brain, they can mimic the effects of opiate drugs like heroine and morphine. Abruptly eliminating gluten cuts off stimulation of these receptors and may trigger withdrawal symptoms, explains Parker.
Support for the theory that peptides from certain foods exhibit powerful opioid effects gained ground in the late 1970s. Researchers at the National Institute of Mental Health demonstrated the conversion of gluten into peptides with potential central nervous system (brain and/or spinal cord) activity in 1978. However, the research was preliminary and conducted on laboratory mice, not humans.
To date, subsequent data confirming an opioid effect in humans has not been published.
A Bright Outlook
Fortunately, patients who suffer from gluten withdrawal report a quick recovery. It typically lasts just a few weeks, says Parker.
Once Nevergall linked her symptoms to going gluten free, she relaxed and let it run its course. “I knew it would end,” she recalls. “I was able to look at this period as part of the process of getting well.”
It took six weeks before the dizziness and inexplicable brain sensations finally ebbed.
“It was such a lift when they were gone. I felt so clear-headed and light on my feet,” she says.
Nevergall acknowledges that it may be difficult for some to accept the reality of gluten withdrawal but says personal experience validated the phenomenon for her.
“I’m sick when I eat gluten and I got sick when I stopped eating it—temporarily at least,” she says. “It’s been a long and bumpy road. I’ve figured out that I’m highly sensitive to gluten and that I have to be extremely vigilant with my diet.”
Today, Nevergall is feeling better than she has in a long time. Her brain fog, headaches, arthritis, fatigue, upset stomach and bloating have all improved dramatically.
“Plus, I lost 20 pounds when I started the gluten-free diet,” she says, “and I’ve managed to keep the weight off.”
But the best part for Nevergall is the increase in her energy level. With renewed vigor, she is revisiting her dream of opening the tearoom—she’s considering a gluten-free one.
Medical writer Christine Boyd lives in Baltimore.