The Allergy You Can’t See

Eosinophilic Esophagitis. Let me help you…

E-oh-sin-oh-phil-ic Eh-soph-a-gi-tis.

One of the strangest sounding medical terms I have ever heard that I can now spell with my eyes closed. Most people just call it EoE for short, but I like to say Eosinophilic. Makes me sound smart.

But what is it? According to the American Partnership for Eosinophilic Disorders, EoE is a chronic allergic inflammatory disease of the esophagus. Basically, these white blood cells called eosinophils collect in the esophagus as an immune response to certain allergens, most commonly from foods (but sometimes environmental). Because these eosinophils are not supposed to be in the esophagus, as they accumulate they cause inflammation, which leads to a number of symptoms.

For infants and children, EoE symptoms are:

  • Reflux that does not respond to antacids or Proton Pump Inhibitors
  • Vomiting
  • Food aversion (poor appetite)
  • Failure to thrive (from not eating)
  • Difficulty sleeping

For older children and adults, the symptoms of EoE include those listed above plus:

  • Difficulty swallowing
  • Food impactions
  • Abdominal and chest pain

Our little Carter’s EoE symptoms began after we started him on soy formula, which we decided to give him because he’d had a mild allergy to dairy. Except he also had an allergy to soy that we obviously didn’t know about; it never upset his belly, he never had a rash and his face certainly didn’t swell up like his brother Mason’s did when he’d had a reaction to corn. But that’s the thing with EoE… you can’t see the reaction.

It took 2 1/2 months for Carter’s symptoms to come out. It began with gagging and vomiting on his solid foods when he was a little over 7 months old, like projectile vomiting in his high chair. A couple months of that and he just flat out refused to eat, which led us to feeding therapy. At a year when we switched him to soy milk is when the night screaming began. Screams so loud, like he was being tortured. We assume this was from the unbearable “reflux” pain he felt from laying down, which the antacid medications he was taking for over a year didn’t even touch. It took us over two years to finally get a diagnosis from an endoscopy procedure and biopsies of his esophagus. Then it took another year after that to alleviate his symptoms by removing his food allergens and having him drink a steroid medication.

Strangely, the first time I had heard about EoE was from a good friend of mine who was having chronic pain in her… esophagus. I remember I was a couple months pregnant with Carter and she had called me in the middle of the night asking if I would go with her to the emergency room. She described to the ER doctors what she was feeling: a horrible burning sensation in her throat, almost like something was stuck, that got worse at night when she laid down. She had been dealing with this pain for months; her primary care physician at the time was pumping her full of antacids and anxiety medication, you know in case it was “all in her head”. Eventually her allergist (also my allergist) tested her for food allergies and sure enough, she had a tree nut allergy. She stopped eating tree nuts and coconut, and her symptoms subsided. Then she got a new primary care physician.

Want to hear the crazy part? About 5 years later, her husband was also diagnosed with EoE. He had started choking on his food, so much so that my friend had to give him the Heimlich maneuver; his esophagus was so inflamed that food would actually get lodged in his throat. He ended up also having food allergies… chicken and wheat (poor guy!). Which brings me to the prevalence of EoE.

I recall reading how rare EoE was a few years ago when Carter was first diagnosed. Like 1 out of 100,000 people (or something like that). Now it’s 1 out of every 2,000 people. And that’s not because EoE is taking over the world; rather more doctors are becoming aware of the disease and are able to properly diagnose people. There are so many people who suffer from chronic “reflux” symptoms that just won’t go away, despite taking reflux medication, who come to find out they actually have a food allergy.

If your child has been taking reflux medications for over 6 months with no relief, or has any of the other symptoms listed above, I HIGHLY recommend you make an appointment to see an allergist or a gastroenterologist. It could be food allergies… the kind you can’t see.

Eosinophilic Esophagitis Resources:

American Partnership for Eosinophilic Disorders

American College of Allergy, Asthma & Immunology

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