Eosinophilic gastrointestinal disorder (EGID) sounds bad but feels worse. Eosinophils are a type of white blood cell that helps fight off infections. But in some cases, eosinophils outnumber the amount that a body needs, and this leads to digestive tract symptoms. Eosinophilic esophagitis may cause chest and abdominal pain, nausea, vomiting, lack of appetite and difficulty gaining weight. Older children, adolescents and adults typically have difficulty swallowing food or food gets stuck on the way down to the stomach. Sometimes, patients report regurgitating food back into the mouth.
Learning about this condition in recent years has brought vivid memories of my daughter Brooke when she was a two-week-old infant unable to hold breast milk or any of the milk-free or prescription formulas down for more than a few moments. “Projectile vomiting,” they called it. We had to mix a thick gruel of cream of rice, prop her in an infant seat and feed it to her slowly. At six months of age, she was diagnosed “failure to thrive” – but her spunk defied the odds.
As she got older, Brooke’s stomach problems continued. I’m thinking she was nearly six years old when she choked on jello! She could point exactly to the spot inside her chest where the food jammed. She complained of “throwing up in my mouth again,” a situation I simply didn’t have a way to understand. The allergist referred her to a gastroenterologist at Johns Hopkins. Brooke swallowed a marshmallow coated with a radioactive agent while standing behind an X-Ray screen. I stood next to the radiologist.
Trust me, it was a little surreal to see the top of your daughter’s head and eyes hovering above her skeleton chewing a marshmallow! When she swallowed, the muscles of her esophagus triggered into sequential action to pull the food into her stomach, but the marshmallow stopped moving. The radiologist asked Brooke to point to where the pain was. With pinpoint accuracy, Brooke’s skeletal finger touched her chest at exactly the point where the marshmallow was stuck.
Next came the endoscopy: the doctor places the patient into a twilight sleep and inserts a tube down the throat and into the stomach for visual inspection and biopsy. When Brooke woke up in recovery, she was quite angry and hoarsely informed the nurses and me that we lied when we said she wouldn’t feel or remember anything. She even told the nurse and doctor what they said. We all felt pretty small and apologized.
The diagnosis, as I remember it, was ulcers and an inflamed esophagus caused by gastroesophageal reflux and aggravated by asthma medications and food allergies. The whole process of getting the diagnosis and diet, plus a consultation with a swallowing specialist (chew food slowly, completely, no rushed meal times) was yet another hurdle to overcome. But with time, medications and lots of trial and error, she made it through.
Back then, there was no such understanding of eosinophilic disorders or the connection with asthma. But today, there is thanks in great measure to the courage and determination of Beth Mays who founded the American Partnership for Eosinophilic Disorders (APFED) back then! They have a great new book, Young Adults Living Well with EGID, that you can order through their website, www.apfed.org (go to “Gift Store”). Or call: 281-239-6479, 8 a.m. – 4 p.m. Central.