CHOKING DISEASE: Living with EoE, afraid to eat - KMSP-TV

CHOKING DISEASE: Living with EoE, afraid to eat

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Imagine what life would be like if at every meal food got stuck in your throat, setting off a choking fit. This is a problem for a growing number of people, with some ending up in the emergency room. Fox 9 Investigator Jeff Baillon looks at what's causing this unusual disease.

What if every meal, every snack, was like playing the slots? A kind of wager on your wellness.

You must choose wisely what you chew, or risk having a scope shoved down your throat in the ER. Imagine not knowing if your next bite of food is the one that triggers a choking fit.

Thousands of Minnesotans are struggling with a strange, and emerging, medical malady. Doctors are scratching their heads, trying to figure out why it appears to be spreading.

AFRAID TO EAT

"Some people are quite traumatized by it, and even are afraid to eat,” said Dr. Jeff Alexander at the Mayo Clinic.

Miles Leffingwell was exposed to all kinds of health risks growing up on a farm. When you handle hay as much as he does, it's not surprising he'd have some allergies. But something strange started happening when he was a kid.

“I choke on fast food quite a bit,” Leffingwell said.

He tried slowing down at meal time and took smaller bites, but food still got stuck -- sometimes it stayed in his esophagus for hours.

"You worried about him a little bit,” said his father, Ray Leffingwell. “You didn't know what was wrong with him and then he'd kind of throw it up and that it'd clear it up."

There was a scary incident a couple years back when it didn't clear up.

“I was trying to get it down so I drank some water and it didn't work and I just couldn't breathe anymore,” Leffingwell said.

He ended up in the emergency room, where doctors used a scope to unclog the food jam.

THE DIAGNOSIS

What ails Miles Leffingwell, and others like Rhoda Baumberger and Seth Locketz, is a mouthful -- eosinophilic esophagitis (EoE).

"We're really very early in our understanding of this,” Dr. Alexander said.

This much they do know: EoE is caused by the same kind of white blood cells found in the runny noses of people with seasonal allergies, or in the lungs of asthma sufferers.

EoE cells make the lining sticky. In severe cases, they cause scarring and narrow the pathway. Dr. Alexander pointed out rough rings on an image of an esophagus -- rings that trap food like a clogged kitchen sink.

This disease is striking all ages -- kids and adults. Doctors speculate it may have something to do with all the chemicals added to our foods the past 30 years.

"Something's changed,” Dr. Alexander said. “This wasn't there before and now it's there now. Clearly our processed foods are something that's changed over that period of time."

THE TREATMENTS

Antacids help some people, and Miles Leffingwell is now taking steroids for his EoE, but the drugs are expensive -- about $250 per month.

Some patients are fearful of the medicine. Rhoda Baumberger is giving a food elimination diet a shot. She stopped eating anything containing wheat, dairy, eggs, soy, nuts or seafood. Sure enough, that cleared up her throat.

But now she wants to know which specific foods are causing the EoE reaction.

Seth Locketz has already been down that road. He discovered he has to avoid anything with dairy, eggs or peanuts.

"Now I have no problems at all,” he said.

Learning that took some doing. Doctors put him on a strict protocol. He'd eat one food, then have an endoscopy to see if EoE broke out. Each test cost several thousand dollars and required a day off from work.

But a much simpler method is in the works.

"We are very optimistic that this may be a quick, a cheap, a non-invasive test,” Dr. Alexander said.

A patient swallows a pill on a string. A sponge pops out in the stomach and doctors pull it back up the esophagus to brush off any EoE cells. The sponge is then examined and the results can indicate which foods a patient needs to avoid.

For some people, the thought of such a test is enough to make them gag. But if you're used to choking on food all the time because of EoE, it’s an easy choice to swallow.

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