What in the Heck is Eosinophilic Esophagitis?

What in the Heck is Eosinophilic Esophagitis?

What in the Heck is Eosinophilic Esophagitis?

Just saying Eosinophilic Esophagitis is a mouthful.  The funny thing is, I heard this term about 5 years before I needed to when an acquaintance mentioned she was having her son tested for it because he kept getting food stuck in his throat.  At the time I thought it was strange and told her that I had never heard anything like it.

Fast forward a few years.  I had a very perplexing toddler.  She was a fussy baby and a fussy toddler.  I am thankful she was verbal at such a young age and she would tell me that her tummy hurt her a lot.  Middle of the night throwing up seemed to be the name of our game.  We identified food allergies and took those out, but something was still not right.

I started researching and researching and found that just because something looks like a food allergy and acts like a food allergy, doesn’t make it a food allergy.  I suspected a disorder called Eosinophilic  Esophagitis (or Eoe).  We went to doctor after doctor, with most telling us that she just had allergies and would grow out of it.  We finally decided to find the best of the best and demand that blood work and an endoscopy be done.  (So much about advocating for our children is a battle, but I will do a post on that at another time.)

Fast forward to the end of that particular battle, with scope AND BIOPSY results in hand, we learned that our daughter did, indeed, have issues with eosinophils.  Now since I am not the kind of person who can blindly follow doctors, I researched like a mad woman.  I needed to understand what this disorder was, how it worked and how to best help my little girl.  I want to share with you the highlights of what I learned.

THE ABC’S OF EOE:

  1.  Just like allergies and auto-immune conditions are on the rise, Eoe is becoming more and more common.
  2. This is another way that the immune system WACKS out, sending a kind of white blood cell, called the eosinophil, to the esophagus (or to the stomach or colon.  My daughter had more eosinophils in her stomach than in her esophagus, but having high numbers in the esophagus is more common.  When it is in the stomach it is called Eosinophilic Gastritis and in the colon it is called Eosinophilic Colitis).
  3. Too many Eosinophils cause inflammation and that inflammation causes swelling and scarring of the esophagus.
  4. Most people with Eoe have asthma, allergies (called atopic), food allergies and eczema.  Environmental allergies can cause “flares” in Eoe symptoms.
  5. Adverse immune reactions to food are the main cause of this disorder.
  6. Medicines help some people with Eoe, with those medicines being Proton-Pump inhibitors and swallowed steroids.  Eosinophils usually respond well to steroids.
  7. Elimination diets are usually essential.  Some people need to remove all food and use elemental formula only.  Formula can be either short term, allowing the swelling in the GI system to reduce or it can be long term (in rare cases) being the person’s only form of nutrition.
  8. Symptoms of Eoe include:  failure to thrive, difficulty swallowing, food impaction, chest pain that is centrally located and does not respond to antacids, persistent heartburn, vomiting and upper abdominal pain (per Mayo Clinic).
  9. Biopsies are the ONLY way to get a sure diagnosis
  10. There is no cure for Eoe, only management of symptoms.

Here are some resources if you want to learn more:

  1.  Apfed.org
  2. Kidswithfoodallergies.org
  3. Rarediseases.org

 

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4 Comments
  • Ginny Lynch says:

    My poor sweet Grandson has this terrible disease. I can not explain how awful it was when he was a baby and couldn’t tell us what was wrong. My daughter took him to Doctor after Doctor. He had test after test and it was food allergies. But nothing changed! Finally they did the scope and found out he has this terrible disease. My daughter is remarkably because she researched like a maniac to find out everything she could about this disease. My Grandson is allergic to nuts, all dairy products, soy, blueberries, and others I don’t even know. So my lovely daughter now makes everything from scratch and this child has flourished. Yes, it is heartbreaking when he wants to eat like everybody else. There needs to be more awareness and research for this disease.

    • sarkfam4@gmail.com says:

      Thank you so much for taking the time to share your heart and thank you even more for being a support for your daughter! I have another blog post called “When Food is the Enemy” and I wonder if it would be an encouragement to her. One thing that makes this so hard is how much of this we have to do alone in this disorder. Oh! I thought of another post that I wrote that might encourage her as well called “3 Things Doctors do That Make Me Want to Wring Their Necks”. My heartbeat behind starting this blog was so that we caregivers don’t have to feel like we are doing this trial alone. I have been at this for about 8 years and there is so much that I wish someone could have told me right off the bat. Maybe that will be what this blog is for someone. Please let me know if I can be an encouragement to her in any way. P.S. My husband also has a rare auto immune condition, so some of my posts speak to that issue.

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