Man Only Ate 3 Things Due to Rare Disease. Now, He’s Trying Real Food (Exclusive)

For most of his life, 24-year-old Ben Sutter never knew what it was like to eat a real meal. 

Diagnosed at just 15 months old with eosinophilic gastroenteritis (EGE) – a rare, chronic disease where the body attacks certain foods as if they were harmful invaders – he relied entirely on Neocate Splash, a medically formulated drink that came packaged in convenient juice boxes. 

By the time he was 20, only three foods – potatoes, rice, and corn – were deemed safe, and even those were only appealing to him with the right preparation. Testing something new meant undergoing an upper endoscopy, an invasive and uncomfortable process that made trying foods feel more like a chore than a pleasure. 

But everything shifted when Sutter was approved for Dupixent in 2021, a prescription medication that targets inflammation and allows him to eat freely without the constant testing. One month after he began using the drug, his endoscopy was clear for the first time in nearly 16 years.

Now, with almost every food finally on his plate, Sutter is diving into eating for the first time – and documenting every bite on TikTok.

“You sort of realize how much society is built around food…birthday parties and events,” Sutter tells PEOPLE exclusively. “There’s always some aspect that involves food and I think you don’t really realize that until you aren’t able to participate in it.” 

From ages 3 to 16, Sutter used a feeding tube daily. For years, he carried the feeding pump, which held two formula boxes, everywhere. It fed him for 30 minutes to an hour, depending on the rate he set it at, and that’s how he got his nutrition for 13 years.

Being homeschooled made managing his condition easier. Once a week, Sutter attended a co-op, which allowed him to connect with others as an inherently social person. It gave him the best of both worlds: flexibility and community.

Although his dietary restrictions didn’t bother him at first, around 12, he started struggling with the idea of wanting to be “normal” like other kids.

Luckily, he says his “parents and family were really adamant about dinner every night not being about the food.”

“It was about spending time with family,” he says. “It was about learning about each other’s days.” 

With three older brothers in the house, his mother tried to include Sutter in as many activities as possible – always finding creative ways to make him feel “normal” in his own way, especially on holidays that revolved around food, like Halloween and Thanksgiving. 

For one birthday, his parents contacted a company that made cotton candy machines, explaining their son’s extreme dietary restrictions. Since plain sugar was safe, the company gifted Sutter his very own machine so that he could enjoy unflavored cotton candy – one of the few treats he could actually eat – anytime he wanted. 

“My mom went to the effort of molding that into a birthday cake,” he says. “And somewhere there is a photo of me with a fork, and it’s just this white cake looking thing that’s just cotton candy.”

Sutter’s parents always reminded him not to feel sorry for himself and that he could still enjoy life, even without experiencing food like most of his peers.

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“In high school, I transitioned to drinking the juice boxes of the formula full time,” Sutter says. “And so I would just carry around this little like black bag, and it just has a whole bunch of juice boxes in it. And that was just my food.”

When it came to attending college, Sutter found that people were generally very understanding about his condition. “I mean, if you walk past me on the street you wouldn’t know anything,” Sutter admits. “I look like a normal person.” 

Now that he can introduce more into his diet, the suggestions – especially from men – are almost always the same: he has to try beer or steak.

“But I based all of the foods that I could try, every food in existence, off of two things: What does it look like? Does it look kind of crunchy, and does it smell good?” he reveals. “So toast was the perfect epitome and cross of both of those things. Toast was just as good as it got, and I could not wait to try toast.”

Sutter’s obsession with crunchy textures stemmed from his early eating habits. Growing up, aside from sugar, the only foods he could eat were all starches, and he only liked them in chip form. Crunch was the only texture that ever felt right to him.

“So to then be like, all right, you can go and eat anything and eat something that’s soft textured? That was very uncomfortable for me,” Sutter admits. “Not a good time.”

Trying new foods has opened up a whole new world for him. Prior to Dupixent, Sutter would have to trial foods by eating one item consistently, everyday, for a month, changing nothing else about his diet. He would then have to have an upper endoscopy at the end of the trial to check for inflammation. 

“It’s really hard to eat one thing consistently every day, for a month or two. I don’t like having upper endoscopies. They’re not a lot of fun,” he shares. “So there was always this deterrent in trying food that added another layer.”

After being on Dupixent for three months, his final endoscopy came back clear. As a result, Sutter was approved to try all fruits, vegetables, and meats – excluding seafood and major allergens like milk and eggs. 

“I’ll never forget coming home from the scope, and I’m sitting down at my apartment. My wife puts a baby carrot in front of me, and I think a piece of celery, because they were both crunchy things,” Sutter recalls.

“And I’m not an anxious person. I don’t typically get nervous – anxiety is not something I’ve had to deal with – but I was sweating, just staring at the food. I was so nervous, so afraid,” he adds.

He finally managed to take a bite – one so small that his wife still laughs about it, joking that she couldn’t even see what he’d eaten. Hating the taste, Sutter threw the food in the trash and walked away. At that moment, he realized the process would be much more difficult than anticipated. 

“I spent my entire life not having to plan when to sit down for meals, and to not have to worry about the inconvenience of making food,” he explains. Recently, he’s been enjoying MadeGood granola bars because they’re an easy, accessible option, almost like a replacement for his juice boxes. 

“I’m still working on volume, because one thing that I also didn’t realize is I’ve never expanded my stomach,” Sutter says. He used to drink about one juice box every hour, but with a very small stomach, even two boxes could leave him feeling uncomfortably full, sometimes to the point where it felt hard to breathe. 

Each box was only 237 milliliters, smaller than a can of soda, but it was enough to max out his capacity. That made eating food feel physically overwhelming, which has been one of the stranger parts of his experience.

“When I sit down with actual food in front of me, like if I put a sandwich down and it’s got two pieces of lettuce and one piece of ham on it, by the time that’s done, I’m basically full,” he shares. “And it takes me half an hour to eat that.”

Since deciding to try new foods, Sutter has been documenting his reactions online. One food he thought he’d love but didn’t? Apples. The crunch seemed like a perfect fit, but when he finally tried one, it was juicier and stickier than expected. He’s realizing there’s a lot more to food than just texture.

Another one of the biggest surprises has been seasonings. Having never had pepper or anything spicy, even mild flavors feel overwhelming. Pepper actually stings his tongue, and spicy foods have way more kick than he ever imagined.

“I haven’t even built the habit of sitting down to eat food. I haven’t built the habit of preparing food. I don’t know how to cook,” he admits. “This is a lot more than I expected it to be.”

Nevertheless, Sutter feels he’s lived an incredibly full life – he’s traveled, graduated college, gotten married and is surrounded by love and support. 

He’s seen comments online from people saying they couldn’t imagine life without food – but for him, it was never about what he couldn’t eat, rather what he could accomplish regardless of his condition.

“So I definitely think I just made a perspective of: Just keep going,” he tells PEOPLE. “There’s a lot of life to enjoy, and it doesn’t have to be around food.”