I recently was diagnosed with EoE after biopsies were taken and my eos were 45/hpf. Since then I have struggled to get a clear treatment plan and I’m feeling so frustrated… and honestly I don’t know how to proceed.
Long story short: after my endoscopy my GI doctor prescribed me Protonix and referred me to an allergist. When I asked about when I need to get re-scoped he said most patients feel so much better on the Protonix that they don’t even need to be re-scoped, so I should be good… so clearly I need to find a new gastro because that’s ridiculous.
I was hoping the allergist would give me a better treatment plan, but that didn’t happen either. In our appointment he seemed hung up on the fact that I did not have seasonal allergies, asthma or eczema. I have carried an EpiPen for the last 25 years because of allergic reactions to shellfish when I was a kid. He did a prick test in office and I didnt react to anything but the control. Not even shellfish. So he ended up being very hung up on the fact that I appeared to have ‘no allergies’ (despite having documented allergic reactions from childhood) since such a large percentage of people with EoE have allergies, eczema or asthma. Because of this he went on about how he thinks my EoE is from acid reflux and probably not a food trigger. This felt confusing since my eos were pretty significant even after being on high dose Pepcid for 3 months prior to my endoscopy and per my research being well over the 15/hpf doesn’t suggest acid alone. He ended the appointment by saying well do further allergy testing for shellfish and to take Protonix for 3 months ‘to see’. When I asked about when I need to re-scope he was vague and didn’t really say.
I felt brushed off by him and almost like he doesn’t think I have EoE even though it’s a pretty objective diagnosis based off the biopsies if I’m understanding correctly?!
So now I feel like I need to find a new gastroenterologist and allergist. So if anyone has any recommendations for either in Southern California/ Orange County please let me know.