Eosinophilic Esophagitis

[OBXMom]

My 8 year old with celiac disease has been having a tough time with a nauseous feeling in this throat after eating, and a feeling that food is getting stuck. This started after he was taken off of the prevacid he took for years for reflux and also his zyrtec to better track allergic symptoms during his elimination diet. The problem began when we added soy, then just got worse and worse despite discontinuing soy. His doctor says that he may have EE, and that if his symptoms don't improve next week after resuming his meds and adding pepcid complete, to come in.

My question is: How important is it to know whether or not it is EE? I think he is improving on his medications, but I am still worried that he might have it. It is only diagnosed by a biopsy, so I am wondering how important the diagnosis is.

- Jane

[Nancym]

I can't answer your questions but Dr. Scot Lewey writes alot about this. You might check him out. Open Original Shared Link

[curlyfries]

This doesn't really answer your question, as I don't know anything about EE, but I have lots of experience with reflux. Before I was diagnosed with GERD, I had the feeling that something was constantly stuck in my throat. This was from the irritation that the reflux had caused. I never really felt nauseous, but it did make me gag sometimes. Since going gluten-free, I haven't needed the medicine---until recently. And I think that is simply because I have recently eaten something that has caused a lot of acid to build up. I got heartburn, a sore throat, and that same "lump in the throat" feeling. I eliminated some things (citrus) and the heartburn is gone, the sore throat is getting better, but I know it will take more healing time for that lump feeling to go away. Perhaps going back on his meds will be all he needs.

Hopefully someone else can answer your question.

Lisa

[OBXMom]

Nancy, I found some great information through the link you posted, and am posting Dr. Lewey's response to this question below in case anyone else is ever searching for the same answer.

Lisa, thank you, too, it is good to hear that regular GERD can cause that same stuck-food in the throat. Hope you continue to feel better.

From article by Dr. Lewey:

"Why is it important to diagnose eosinophilic esophagitis and distinguish it from acid reflux esophagitis?

Acid reflux esophagitis usually responds to acid blocker medications like histamine 2 blockers ranitidine (Zantac), cimetidine (Tagamet), famotidine (Pepcid) and proton pump inhibitors like omeprazole (Prilosec) or esomeprazole (Nexium) whereas eosinophilic esophagitis often does not get better with these medications. Acid reflux injury to the esophagus can result in narrowing or constriction of the lower esophagus causing a food sticking sensation. This can be treated by a stretching of the constriction known as esophageal dilation that is usually safe and highly effective. Eosinophilic esophagitis also may result in constrictions of the esophagus but the stricture or rings are usually multiple, located higher in the esophagus and carry a high risk of tearing or puncturing the esophagus if dilation is attempted before treatment with steroids. There does not seem to be an association of cancer of the esophagus with eosinophilic esophagitis like there is with acid reflux. However, eosinophilic esophagitis can be chronic and difficult to treat."

[happygirl]

www.apfed.org

I'd say its extremely important to have a knowledgable doctor about it and an accurate diagnosis.

[pixiegirl]

I'm a member of apfed.org, I have EE and EGID... So I like to say ED which means eosinophilic disorders (but seems to mean another disease that you take Viagra for!)

Anyhow, I also have Celiac and I got better when I went gluten-free but not entirely. I feel so lucky that I had a GI doctor that kept looking and I was diagnosed via a biopsy. Once I had the diagnosis I was sent to an allergist, allergy testing was done, elimination diet and I've pretty much got it under control. I take gastrocrom for it, which is a mast cell inhibitor and that has really helped me a lot.

I'd say that getting a proper diagnosis for EE is really important, otherwise you might be limiting foods or doing the wrong thing for a condition your child may or may not have.

Good luck,

Susan