Sharing My Family’s Experience With EE – Symptoms

This is part of a series of blog posts sharing my family’s experience with eosinophilic esophagitis (EE) in response to reader questions. Check out prior installments in the series here, and always consult your physician.

In the most recent post in this series, I took you through the story to when my son’s gastro-intestinal specialist discovered severe inflammation and eosinophils in his esophagus.

EE was just starting to be understood. Pediatricians had never heard of it. My son’s GI did some research and uncovered some very new research on the disorder. At that point, the connection between food allergies and EE was also not well understood. Nevertheless, she suspected EE, and she suspected that food was the trigger.

She prescribed Flovent inhalers to help clear up his esophagus (more on that next week), and sent us to see an allergist (more on that also next week). Here, I want to focus on symptoms and answering the question:

How did we know for sure it was EE?

Diagnosing medical problems in infants and children are tough because kids don’t know something is wrong if that’s all they have ever experienced. It’s just the way things are.

This was the early days of the internet, but it was the first place I turned to find out more about EE. There wasn’t much out there, but I found some case studies and stories of patients that had EE. It was the way the patients described the problem and the specific words they used to describe the problem that really resonated with me. I share this with the hope that it may resonate with others still in the diagnosis phase. They said things like:

• Food gets stuck
• The back of my tongue swells up
• It hurts in my chest (note that they don’t say stomach)

In addition:

• They ate slowly (last to leave the table and usually left food on the plate). My son would often try to go back and finish later.
• They complained about the texture of certain foods, and that some foods were too dry.
• They cut their food into small pieces (smaller than typical).
• They threw up or spit up or regurgitated.
• They were fine when they weren’t eating (unlike a flu or typical stomach ache).

When I read the stories I found on the internet I saw that these patients were describing the problem exactly the same way my son did. When he read the stories he knew for sure that EE was what he suffered from.

But the symptoms really point to the swelling of the esophagus, and the fact that food (any food) then gets stuck. It didn’t help us identify which foods caused the swelling. So next up in this series I will tackle that subject.

If you have a question on this topic you would like me to address please send me an e-mail or leave a comment here.