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Stephanie Ingberg, an 18-year-old high school senior from St.Louis, got so sick from the E. coli bacteria in her Caesar salad that her kidneys shut down. She took months to recover.

But the Centers for Disease Control didn’t count her among the victims of the deadly spring 2018 outbreak because she was mistakenly given antibiotics that caused her to test negative.

Lucas Parker nearly died from his encounter with E. coli-laced salad on a family trip to Disneyland in California. The toddler suffered traumatic brain injury.

But the CDC didn’t count him either because he lives in Canada.

It’s always been challenging to identify the victims of E. coli poisoning because so many people never realize that the bacteria caused their upset stomach or other symptoms. But the CDC makes the job even harder by using a counting method that leaves out the vast majority of people poisoned by the toxic bacteria. Foodborne illness experts estimate that the CDC captures only about one 10th of the actual victims from outbreaks.

“It’s quite common to not be counted,” said Bill Marler, a Seattle-based attorney who has represented food poisoning victims such as Lucas Parker for 27 years. He estimates that 5 to 10 percent of his clients are excluded from the CDC’s count of E. coli victims for one reason or another despite strong evidence the bacteria made them sick.

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CDC officials acknowledge that they use a rigorous counting method that sometimes excludes potential victims but insist they can get the big picture of the extent of E. coli outbreaks from other databases that estimate the total number of victims.

“We have a number of ways we’re monitoring E. coli,” said CDC spokesman Brian Katzowitz, including the CDC’s National Notifiable Diseases Surveillance System and the National Outbreak Reporting System.

However, some public health experts fear that undercounting individual victims, along with the fact that people already underreport, may contribute to the public’s lack of awareness of the risk of getting sick from food.

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“It really makes it hard to look at foodborne illness trends over time,” said Sandra Eskin, project director for food safety at the Pew Charitable Trusts.

Many people who get E. coli dismiss it as a bad stomach bug and don’t seek treatment from their doctors. Even when victims get gravely ill, they often cannot pinpoint lettuce as the cause because symptoms commonly don’t appear for a week after exposure. By then, victims typically have consumed or thrown away the lettuce, erasing any proof of what got them sick.

“If somebody gets sick from leafy greens, it’s very difficult to trace it back to an original source,” said food safety lawyer Shawn Stevens.

Since 2006, the CDC has identified nearly 40 multistate E. coli outbreaks. Leafy green vegetables account for 12 of those outbreaks, more than any other source. That’s where their strict counting method excludes victims left, right, and center.

CDC officials exclude many cases because doctors use a diagnostic test for E. coli that the officials don’t recognize. Doctors typically prefer a faster test known as a culture independent diagnostic test, or CIDT, but the CDC prefers a more accurate test that involves growing a culture to provide health departments the information it needs to see whether it is part of a broader outbreak.

“We have been concerned about CIDTs for a while,” said Eskin with Pew, which hosted a 2018 conference with the CDC and other groups about the benefits and challenges of the quick turnaround tests.

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Even though the agency does not count CIDTs in its outbreak counts, CDC spokesman Katzowitz thinks the agency may be seeing “an increase of diagnosis partly due to increased detection with CIDT.” In other words, more health officials are doing initial testing with these cheaper and faster tests. That could lead to further testing that CDC would include in its official tally.

In the case of Ingberg, the high school student had flown to the Dominican Republic for a senior trip after she had eaten her E. coli-contaminated salad. Doctors there mistakenly gave her antibiotics, so that when she returned home to her local hospital, testing did not show she had E. coli. However, she had the Shiga toxin variant and a type of kidney failure linked to E. coli, medical experts say.

There are other quirks about how the CDC counts its cases that reduce the official number of victims even more. CDC did not include Lucas Parker, the 2-year-old Canadian boy who suffered brain damage after consuming five bites of his father’s salad while on a 2018 vacation in California, because he does not permanently live in the United States. Canadian health officials included Lucas in that country’s case counts.

Katzowitz said that the CDC counts cases based on where people live so that their local health departments can follow up with them.

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Nathan Parker, Lucas’s father, thinks it’s just a matter of common sense — and fairness — to include his son among the US victims. It also does not make sense to him that US health officials cannot track the case.

“It’s horrendous. We were Canadian citizens on holiday in America. We stopped at a hospital in the United States. So they know about that,” said Nathan Parker. “We had testing done there. We walked out of there and the doctor thought he had E. coli.”


Christine Haughney can be reached at christinehaughneydb@gmail.com.