Eosinophilic Esophagitis (EOE)
Archived Q&A and Reviews
My son who is five just became diagnosed with Eosinophilic esophagitis, EOE. It is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EoE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.
I am wondering if anyone has information on this? How did your family adapt with cutting the six top food allergens. What advice could you give me. Are there alternative from of treatment that can help.
Thanks in advance. Rebecca
If you haven't already found this website, you might findit useful for dealing with allergen foods http://www.foodallergy.org/ RK
Hi- I was hoping you might get more responses to this, as I'd be interested in hearing how other families are handling EE. My now 10 year old son was diagnosed about 14 months ago, after trouble with food getting 'stuck' in his esophagus. Prior to this we'd had no indication that he had any allergies whatsoever (where as my other child has all sorts of environmental allergies.) We did blood tests, scratch tests and food patch tests--frankly all pretty miserable. He came out as allergic to basically everything. The Allergist Doc had some pretty extreme recommendations with regard to eliminating foods. On consultation with the GE Doc an our Pediatrician we decided to follow a more limited approach. We took him off of corn and wheat, and he's been on a topical steroid called Pulmacort as well as a reflux med. He's symptom free, and gaining some weight (which had been an issue). The moderator is welcome to share my email address with you and we can talk in person. I know I was ve ry distraught when first learning about this condition, but we are doing OK now. Stephanie
i'm late replying to this question because i already contacted the original poster directly. my 10yo daughter was dx w/ EoE in 2010. we are currently on our third GI (and happy!), as many doctors don't know how to properly diagnose or treat this disease. i have a TON of information and resources (which is why i didn't originally reply to the question) but as this disease is being diagnosed more frequently, i wanted to post at least a few resources for others.
- familiarize yourself with the updated TIGERS consensus: http://download.journals.elsevierhealth.com/pdfs/journals/0091-6749/PIIS0091674911003733.pdf
- visit http://curedfoundation.org/site/
- also: http://apfed.org/drupal/drupal/index.php
There are facebook groups for EGIDs. most of these are 'closed' or 'secret' groups, so unless you are verified by the admin, you cannot find them or get in. there's also a great one for norcal people. emily
I didn't see any recent recommendations for a gastroenterologist who specializes in eosinophilic esophagitis. I am newly diagnosed and would like to find a doctor who would pursue the latest treatments for it. Does anyone have any ideas of more progressive GI doctors? Jen
i honestly don't know if there are any gastroenterologists in the bay area who specialize in EoE in adults, i've had a hard enough time finding one knowledgeable in treating children. (although it does present differently in adults and children, and the treatment varies greatly from person to person.) with that said, my dad loves his GI and says he knows a lot about EoE (dad does not have EoE). here is his contact info: john j. jolley, md 711 D st. suite 106 sn rafael, ca 94901 415 275 3030
i have a daughter dx w/ EoE (although she wasn't diagnosed correctly, which is another story, so we have lost time and have now put her on a high dose ppi, then will re scope and biopsy. neither her first or second pediatric gi did this, and this is protocal to confirm dx.)
you will also need an allergist, and preferably someone who can work together with your gi and also a nutritionist, depending on how many/what foods you need to eliminate. remember that IgE mediated allergic reactions are different than eos reactions and may not show up on traditional allergy testing. a lot is trial and error.
There are some great groups on facebook for information and support. you should also familiarize yourself with the 2011 consensus and TIGERS consensus. i've learned a lot since our 7yo daughter was dx a little over a year ago. emily