What is an Eosinophilic Disorder?

What in the world is an eosinophilic gastro-intestinal disorder ? (this does take practice….but here’s how to pronounce it: “e-o-sin-o-feel-lic”)


I thought I’d take a moment to define the diagnosis Stanton has been given and is being treated for. Most of this information came from a wonderful site for Eosinophilic disorders. Thank you http://www.apfed.org/ for being in existence for parents like me! Of course, you’ll see that I’ve added in some information particular to our story….

Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. This is where it’s tricky for Stanton. He had an endoscopy in April to specifically look for eosinophils and none were found. Stanton began treatment for EE three weeks prior to the endoscopy so some of our specialists feel that this proves the treatment is working, while others on our team think it shows he may not have EE. So, for now, we are treating Stanton as if he has EE while still undergoing tests to rule out other things that could be going on. Stanton matches each and every symptom of EE and has responded well to the treatment!

Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). Stanton had severe inflammation and damage before starting treatment for EE. Before, we treated him with a whole variety of reflux medications. He never showed progress while on acid blocking medications. There may be an inherited (genetic) tendency. (We have an appointment with a geneticist in July.) EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve. (Stanton switched to an amino-acid based formula, Elecare at the end of March.)

Common symptoms include (Stanton matches ALL of these):
o Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
o Dysphagia (difficulty swallowing)
o Food impactions (food gets stuck in the esophagus)
o Nausea and Vomiting
o Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
o Abdominal or chest pain
o Feeding refusal/intolerance or poor appetite
o Difficulty sleeping

At present, the only way to definitively diagnose EE is through endoscopy with biopsies. The endoscopy is often performed after treatment with reflux medications (acid suppressors) have failed to relieve the symptoms. During an upper endoscopy, the gastroenterologist looks at the esophagus, stomach, and duodenum (first part of the small bowel) through an endoscope (small tube inserted through the mouth) and takes multiple biopsies (small tissue samples) which a pathologist reviews under the microscope.

The gastroenterologist may be able to see a problem through the endoscope, but eosinophilic esophagitis may be present even if the esophagus looks normal to the doctor. That is why the biopsy samples are important to making the diagnosis of EE. A high number of eosinophils throughout the length of the (> 15 per high power field) suggest the diagnosis of EE. GERD also causes eosinophils in the esophagus, but typically far fewer and only in the part of the esophagus closest to the stomach. The pathologist will also look for tissue injury, inflammation, and thickening of the esophageal layers. With EE, the increased eosinophils are limited to the esophagus and not found in other areas of the intestinal tract. Once the diagnosis of EE is confirmed, food allergy testing is typically recommended to guide treatment. THIS IS EXACTLY WHERE WE ARE IN THIS PROCESS. Stanton is currently undergoing all the food allergy testing through a specialist at Ochsner’s.

Watch this video to see other families and children living with this diagnosis.  It sooooo describes our life and the stories sound so much like Stanton.