Hi everyone! This is kind of a long winded post but I’m feeling a little lost and would love to hear from people who have been through something similar.
I’ve had dysphagia/swallowing issues for almost two decades and was officially diagnosed with EoE this January. My first endoscopy showed severe strictures and the scope couldn’t pass without an initial dilation. I had another scope in February and a third in March, both with continued dilations.
I don’t have GERD symptoms but I’ve been on a PPI since January. I tried Eohilia and didn’t tolerate it well so my doctor prescribed Dupixent. It’s sitting in my fridge, I haven’t started it yet, and honestly, the two injections the first week feel a little intimidating.
I also had allergy testing today for 60+ allergens including food, EoE panel, and environmental allergens. The only thing that came back positive was ryegrass. I was really hoping the testing would give me a clearer “trigger” to remove, so I’m confused about how my EoE could be this severe with only one positive allergy result.
Has anyone else had severe EoE/strictures but very minimal allergy test positives? What explanation did your doctor give you? Did allergy testing end up being helpful for you, or did you still have to figure out triggers through elimination diet/endoscopies?
I was hoping to eventually get my EoE under control with a strict diet and maybe come off injections and PPIs but my doctor feels I may need lifelong medication because of the amount of fibrosis/stricture damage. I am 25 and I’m struggling with that and would really appreciate hearing others experiences with Dupixent, dilations, fibrosis, and long term management.
Not looking for medical advice just personal experiences, encouragement, and questions I should maybe ask my doctor.