Can you imagine waking up drunk, or getting drunk in the middle of your workday without having touched a drop of alcohol?! When I first saw my husband Joe having these drunken episodes, I thought he must be secretly drinking or at least sleepwalking to the liquor cabinet.

He’d been having weird episodes for six years and got checked out by a neurologist, an endocrinologist, a cardiologist, and other specialists, but all tests were normal. I never suspected alcohol until one day during a bad episode, I drove him to the hospital, and his blood alcohol concentration (BAC) was three times the legal limit!

Of course, I checked the bottles of alcohol, scoured the house for secret hiding places, and examined the finances. But I could find no evidence of excessive drinking. Yes, he was a social drinker, but Joe is a registered nurse, and in thirty years had never been known to have a drink before or during work or while being on call.

So, what the heck was going on?

Being a registered nurse myself, and a relentless seeker of knowledge, I began searching scholarly articles about how a person could possibly be drunk without ingesting alcohol.

After weeks of digging through the medical literature, I finally hit on a disease called auto-brewery syndrome (ABS), also known as gut fermentation. ABS is an infection in the gut microbiome where an overgrowth of bacteria or yeast ferments carbohydrates into ethyl alcohol. We all ferment tiny amounts of alcohol that are typically metabolized before being detected by blood tests or breathalyzers. Only when the fermenting organisms multiply out of control will we see the BAC rise.

The diagnosis is a bit tricky because the current published procedure is to have the patient in a controlled, observed situation without access to alcohol, eating high-carbohydrate foods, and having blood alcohol levels drawn on a schedule. The test may last up to 24 hours before the patient has a rise in BAC. At any point where the BAC rises above 0.01 percent, the diagnosis of ABS is made.

However, most hospitals and clinical facilities are not set up to conduct these tests, and there are no standardized lab tests or codes for insurance payments.

If the provider believes a patient is not drinking alcohol, the diagnosis can also be made by history and physical examination, along with GI samples obtained through EGD/colonoscopy and stool cultures to identify whether the offending organism is bacteria or yeast.

Whether or not a carb challenge is conducted, the treatment will be guided by these cultures. Like other infections, the treatment of ABS may consist of medications to reduce the fermenting bacteria or yeast.

However, the goal to get the gut back into balance requires more than just medication. This is often the hard part for patients – to follow a very strict low-carbohydrate diet for up to a year.

Joe was one of the lucky ones because he was able to find a physician who would listen to us and learn about ABS. Dr. McCarthy was willing to be what all providers should be: a detective to find out what is going on with their patients who don’t fit a common diagnosis.

Joe took medications, followed the diet, and took supplements and probiotics to help rebalance the gut microbiome. He also learned to manage his stress and exercise more. Several years went by before he felt completely healed through his lifestyle changes.

Once Dr. McCarthy treated Joe, he suggested we co-author a case study, which we did. When the case study was published, I thought we were done with the whole difficult journey.

But NPR picked up the news story.

Little did I know how many people were having similar symptoms to Joe’s. I began receiving emails and calls from around the world! Hundreds of people contacted me within the first three years, and I took all the calls, all the requests for interviews, and began to educate people with what I knew. Most people who contacted us described the difficulties in finding an appropriate diagnosis and treatment. Tragically, many are turned away from health care, being called alcoholics, liars, or fakers.

I grew into my role of advocating for people who think they have ABS and their caregivers. In 2019, I wrote the first modern book on ABS. The only other book I know of is titled Auto-Intoxication in Disease. I started a nonprofit, and our volunteer staff have worked with over 1,000 people to date who are searching for answers or who have been diagnosed with ABS.

While many people with ABS can go into remission for years, others relapse repeatedly. Still others may become chronic sufferers and seem unable to find the right combination of treatments for their relentless endogenous ethanol “flares.” Even some of the few people who have had fecal microbiota transplants (FMT) for ABS will relapse.

The most tragic side effect of ABS is when people develop alcohol use disorder (AUD) from repeated exposure to the production of alcohol in their own gut.

And some patients die from ABS and the drinking or liver damage it causes.

We continue to support ongoing research into ABS and education of all health care providers, legal professionals, and law enforcement staff so they can help people who suffer from this rare but underdiagnosed syndrome.

Barbara Cordell is a nurse researcher.