‘WHAT’S GOING ON?’ The nurse said, ‘Everyone is freaking out! His blood alcohol level is so high!’ He’d only consumed a piece of chocolate cake.’: Widow raises awareness about Auto-Brewery Syndrome after husband’s long road to diagnosis

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“My name is Michelle, Vice President of the non-profit Auto-Brewery Syndrome Information and Research, Inc. If someone would have told me this is what I’d be doing, I would have told them they were crazy. But here we are. Here I am. But let’s rewind.

In 2013, I met Donato on Facebook through a mutual friend. We chatted online for about a year, learning we had a lot in common. In 2014, we finally met in person. Since that day, we were never apart. He was the kindest, most considerate, loving man any woman could want. He had a heart of gold. He was also very generous, and became instant friends with anyone he met. It wasn’t long before he purchased an engagement ring and asked me to marry him, which I gladly accepted.

Couple that met on Facebook take backpacking photo together during vacation
Courtesy of Michelle Giannotto

In 2015, Donato went for routine nasal surgery, and we went to my house afterwards so I could take care of him. Earlier in the year, I also had surgery. During that time, he made sure he was there for me, taking care of me for several weeks. It was only natural that I took care of him. We were a couple. We were partners. We were in love. We made sure we had each other’s back in good times and bad.

As there are risks with any surgery, he experienced a post-op infection. His pain was really bad and his doctor had us meet him in the E.R. I took him to the ER for a CAT Scan of his head. They found that the infection was quite bad. Soon, they admitted him for observation and gave him IV antibiotics. The next morning he left with a script for oral antibiotics.

Guy lays in hospital bed with gauze on his nose after nasal surgery
Courtesy of Michelle Giannotto

Donato was not right since the surgery. He was always sick, vomiting, slurring his speech, sometimes was unable to walk, and always sleepy. He would sleep right through days where he was to report to work. I became concerned, and asked that he move in with me. I wanted to keep a closer eye on him. I felt that during his follow-up doctor visits they were missing something. He was not getting well. In fact, he was getting worse.

In November of 2015, Donato had been sleeping for three days. He only got up to eat and use the bathroom. I kept calling his doctors for help. They only suggested I keep taking him to the hospital. I had already been taking him to doctor appointments in different cities and states for 2 months, and we were not getting anywhere.

Married couple take selfie together during a night out
Courtesy of Michelle Giannotto

One morning, something told me not to leave the house while Donato was asleep. On this particular Sunday, I felt different. I was afraid to leave him alone. The night before, we had friends over for dinner.  To get him to eat, I had my friends help me wake him and walk him to the table. He could barely chew. When he went back to bed, I sat at the table and cried. My friends asked me, ‘How long has he been sick like this?’ I told them, ‘Since his surgery. He’s sick all the time. No one knows what’s wrong with him.’

I was sitting in the kitchen right outside the bedroom where he continued to sleep. I had just taken a shower and I was in my nightgown. I started to hear him cough, but the cough didn’t sound right. I got up and ran into the bedroom. I saw him choking on his own vomit while he was on his back. He was having a seizure. I quickly rolled him on his side. While he was vomiting on the bed, I picked up the phone and called 911. All I could think of was that had I left the house, he would have been dead in the bed. I was frantic. When the paramedics arrived, I gave them a quick history. As they were attending to him, I called his family, my family and friends. I needed them to help me. If anything, I needed emotional and moral support. I was falling apart. Donato’s situation had clearly escalated.

He was in the ICU for a week. Doctors went over every test result he had done previously; blood work, EKGs, CAT scans, chest x-rays, sonograms, you name it. They were trying to figure out what happened, and put all the pieces together. After about 2 weeks of their own testing, they came up with nothing. I told Donato, ‘Come hell or high water, we are getting answers. I’m not going to continue to allow you to suffer.’ I was angry and frustrated. He no longer had the energy to fight. I would fight for him.

Happy married couple take a photo together while out on a dinner date
Courtesy of Michelle Giannotto

His illness continued for the next 14 months. He was hospitalized 18 times; almost every 3 weeks. He was missing a lot of work, and was frustrated because doctors could not figure out what was wrong with him. Donato had also swelled with 60 pounds of fluid, and his resting oxygen (awake) dropped to 74. His oxygen while sleeping was 66. He was immediately put on 24/7 oxygen with a bi-pap at night. However, there was absolutely nothing wrong with his lungs. I kept telling doctors, ‘It looks like he’s drunk all the time, but I’m there, and can attest to the fact he’s not drinking. If he didn’t live with me, I would not feel so confident to say that.’ We were angry, depressed, and at times felt hopeless. We live near the greatest city in the world (New York City), and regardless of what hospital we went to, or doctor we saw, no one could figure out what was wrong with him.

In the fall of 2016, Donato was pulled over and arrested for a DUI. When I picked him up at the police station, I asked the arresting officer many questions, one of which was how can someone who wasn’t drinking have a breath alcohol level three times the legal limit. As the officer and I spoke, I told the officer Donato had just gotten out of the hospital a day earlier, and we were going through our own private hell. I told the officer he’s been sick for so long and we can’t find out what was wrong with him. The arresting officer suggested we try a different hospital. We did!

The hospital ran all kinds of tests and what they concluded was his blood alcohol levels were three times the legal limit 12 hours later. The entire day his blood alcohol levels were three times the legal limit. We were confused; the doctors were confused. No one could explain how Donato had alcohol in his body all day long even though we went right from the police station to the hospital.

Thanksgiving weekend 2016, we decided to visit with my Aunt in Long Island, New York. While we were there, my cousin and his wife came to visit too. Everyone was shocked when they saw Donato. They could not believe how much he declined in health. They wanted to know what was going on. Since my cousins were both doctors, I told them everything that had been going on for the last year. I also told them Donato was recently arrested for a DUI, and on top of not knowing what was going on with him medically; we needed to hire an attorney.

It was my cousin who suggested we look into Auto-Brewery Syndrome; ABS. She had just returned from a medical conference for Rare and Unusual Conditions where ABS was one of the topics. We started internet searching for case studies and found some. This was a real condition, possibly caused by taking antibiotics resulting in an excess of yeast growth, brewer’s yeast, which is responsible for converting carbohydrates to alcohol. All the pieces fell together. My cousin suggested we purchase a breath alcohol meter online, which I did.

Married couple take photo together at Thanksgiving dinner with fall-themed decorations behind them
Courtesy of Michelle Giannotto

My cousin had also suggested we call a Gastroenterologist. When we received the breath alcohol meter on Monday, Donato blew into it as soon as he woke up. His alcohol level was .20 mg/dL. I blew into the meter to test it and I was zero. I handed the meter back to him to blow again, and he was .20 mg/dL. He was waking up with an alcohol level three times the legal limit. When he ate, it went even higher. We were floored! Two days later was our emergency appointment with the GI doctor. He admitted Donato to the hospital for a 24-hour high carbohydrate challenge using food with strict supervision. We had already hired an attorney and gave him the updates on what we learned about the possible diagnosis and the testing that was about to happen.

When we showed up for the testing, we were cautiously optimistic. Donato asked me, ‘What if this isn’t it? Then what?’ I said, ‘I don’t know.’ We were scared. The doctors were concerned because Donato’s baseline blood test for alcohol upon arrival was already high. After the doctors got his blood alcohol levels back down to .000, they fed him carbohydrates. Food was being used in place of the glucose drink since Donato was a type 2 diabetic. It was Donato, me, and 2 nurses in the room. One of the nurses was talking to us the whole time. She was amazed to listen to the story of our journey. Donato was sitting on the bed eating a piece of chocolate cake and other snacks we got from the hospital vending machine. About an hour after he ate the sweets, the nurse took the first blood draw.

I asked Donato to blow into his breath alcohol meter and it registered .19 mg/dL. We called the nurse to let them know his breath alcohol number and showed them. The nurse took the blood draw as soon as they could. It would take about 2 hours to get the results back.

It was around midnight when they took the blood draw and we knew it was going to be a very long test, so we closed our eyes and slept. At 2 a.m., the lights flipped on in our room and many doctors and nurses ran in and were giving Donato injections, and putting IV bags on his pole and hooking up a heart monitor. I asked, ‘What’s going on?’ No one said anything, but you could see from their faces they were really concerned. One of the doctors asked, ‘How long has this been going on?’ meaning his symptoms. Donato said, ‘Over a year now,’ then the doctor left the room.

Man with Auto-Brewery Syndrome gets attached to IV bags during testing
Courtesy of Michelle Giannotto

When one of the nurses returned with more IV bags, we asked, ‘What is going on?’ She said, ‘Everyone is freaking out. Your blood alcohol level came back so high after you ate those snacks.’ I said, ‘After one hour?’ The nurse said, ‘Yes! We never did this test before. You guys have everyone freaked out.’ Then she left the room to get more medical supplies. I looked at Donato and he smiled, I started crying. I said, ‘We have a diagnosis.’ We were celebrating. We even took a selfie together, smiling. I didn’t care that it was 2 a.m., I texted and called everyone that knew we were in the hospital and told them we found our answer; Donato’s body was converting food to alcohol!

Couple take selfie together after husband gets diagnosed with Auto-Brewery syndrome
Courtesy of Michelle Giannotto

We decided to keep our original wedding date in April 2017. Now, it was only a matter of time for his treatment and we could move on with our lives. The DUI charges were dropped so that stress was off our minds, but we were not quite out of the woods. You would think because we had a diagnosis, treatment would be easy. It wasn’t. Our doctors tried different antifungals that didn’t work. We tried two other hospitals. The doctors that tried to help us called the National Institute of Health for support. There just wasn’t enough information on how to treat ABS if the antifungals in the case study didn’t work. I called over 100 doctors in the United States while Donato continued to be sick, and Donato went to 6 major name hospitals in NY and NJ. No one knew about ABS, and they didn’t know how to treat it. We were turned away by the best of the best nationwide. We were back at finding the needle in the haystack; finding a doctor who would take Donato’s case. We had to find a doctor willing to learn about ABS.

It took another four months and we finally found a doctor in Staten Island, NY; a Gastroenterologist in our hometown. This doctor knew nothing about ABS, but he was willing to learn. We joined a support group on Facebook for people with ABS.At the time, there were 30 members; today we have over 1,000 people seeking support for this condition. Our GI doctor told us to get married, and everything would be okay. He only asked that we postpone our honeymoon. He did not want us traveling until Donato was well.

Couple who met on Facebook take a photo together in the church where they had their wedding ceremony
Courtesy of Michelle Giannotto
Newlyweds take romantic photo together during their wedding photoshoot
Courtesy of Michelle Giannotto
Courtesy of Michelle Giannotto

The Gastroenterologist did colonoscopy and endoscopy cultures with DNA identification and sensitivity tests and found there was brewer’s yeast and brewer’s bacteria overloaded in his body. The lab also determined that the strains were resistant to the common antifungals. They inserted a PICC line and we were to administer at home daily IV antifungals daily for 8 weeks. It worked. In July of 2017, my husband was finally reversed of this condition. I encouraged my husband to go public and tell his story. He was reluctant at first because of the negative association with alcohol. Many family, friends, and doctors dismiss people who are intoxicated but claim they do not drink. The family and friends are accused of being enablers, and for the person with ABS, they are given a pamphlet for alcohol rehab.

After this long journey, we decided we wanted to help others that were going through our hell. We started with the support group. When others learned that my husband’s condition was reversed, they came to see our doctor in Staten Island, New York. My husband and I would visit with them at their hotel room, or at the hospital and give the people with ABS and their family hope and courage to fight on. After visiting a few people who also had ABS, my husband realized it was important for him to tell his story.

Man who recovered from Auto-Brewery Syndrome wears a t-shirt that says "A medical condition should not be a crime"
Courtesy of Michelle Giannotto

After my husband went public, his story went worldwide. Others in our support group had already gone public with their story too. Momentum was picking up. What we found is this is not rare, but rarely diagnosed. I became passionate about ABS because I didn’t want any other family or person with ABS to have to figure out how to navigate finding help. I quickly became a patient advocate, helping others who were as scared and lost as we once were. It wasn’t much longer that I received a phone call from Barbara Cordell, the author of the book My Gut Makes Alcohol, asking me to become part of the non-profit for ABS, which I was very happy to do.

Woman shares photo of book written by Barbara Cordell called 'My Gut Makes Alcohol' to raise awareness on Auto-Brewery Syndrome
Courtesy of Michelle Giannotto

Sadly, my husband died in November of 2020. I miss my husband; my best friend. A very good man was taken from this earth too soon. There are nights I’m in so much pain, I am convinced I will not survive the night. But I do. I wake up, and start a new day. When my husband was suffering with ABS, he would ask me, ‘Why me?’ I would answer him, ‘Maybe because you are supposed to change the world. Maybe you were here to help others.’ I told him, ‘I had no idea I would be pulled into this underworld too, but I’m happy to do this with you. Together we will change the world and put ABS on the map.’

Married couple get professional photos done after husband beats Auto-Brewery Syndrome
Courtesy of Michelle Giannotto

I’m not going to let his passion for helping others with ABS die with him. His struggles, his courage, and his heart will carry on. Donato and I agreed to be interviewed and included in a first ever book about ABS. I also continue to volunteer my time to help others with ABS as well as educating Lawyers, Doctors, Police, Nurses and anyone who will take the time to learn.”

Woman advocating for Auto-Brewery Syndrome wears shirt that reads "Auto-Brewery Syndrome, The struggle is REAL"
Courtesy of Michelle Giannotto

This story was submitted to Love What Matters by Michelle Giannotto. Donate to ABS non-profit research here or purchase Barbara Cordell’s book ‘My Gut Makes Alcohol’ here. If you are a doctor willing to help diagnose or treat ABS patients click here. Submit your own story here.

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