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Eosinophilic Esophagitis
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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

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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. :D

Lisa

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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."

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www.apfed.org

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

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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

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    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
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    • Tell us how it acts please. Just looking at pictures doesn't give much info. It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be done and it's NOT ON a lesion so make sure they don't pull that little number on you. They work for YOU, not the other way around. Make them prove it isn't dh by doing a biopsy the correct way. Do NOT take any oral steroids or get steroid shots within 2 months prior. You're going to have to be extremely firm with them but don't let them deter you from the course. Challenge them to prove what it isn't because they can't prove it's contact dermatitis.
    • Karen is right.  Do the research.  Have you been tested for celiac disease? Here is more info..... http://www.cureceliacdisease.org/screening/
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