Eosinophilic Esophagitis : I recently had a... - FABED

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Eosinophilic Esophagitis

FTHP1998
FTHP1998

I recently had a gastroscopy and biopsy taken to find out why I struggle to swallow and often end up with food stuck in my throat. Last Friday I finally got my diagnosis, I have Eosinophilic Esophagitis and a narrow gullet. I’ve being put on lansoprazole for a month and then an inhaler (the brown one) to see which method works best. If neither works they will most likely have to surgically stretch my throat, which is something I’d like to avoid.

Truthfully, despite feeling happy knowing that my issues with swallowing are not just a psychological thing (something previous doctors tried to suggest), I also feel quite fed up. I already have 2 chronic illnesses, and I’m only 21, so it feels rather discouraging that I have yet another illness to contend with.

It was nice to find this community though, and I’m hoping that through this I’ll start to feel better about it all. And maybe even learn some stuff about how to minimise the discomfort I deal with, or maybe even just some general advice.

Thanks and sorry for the rant, it’s just freshly on my mind and I’m not exactly dealing well with it.

I hope everyone else is doing okay though!

3 Replies
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Hi,

It took me years to get diagnosed with Eosinophillic Esophagitis...I'd been having symptoms since I was 8 but not diagnosed till I was 34! I was told for years it was anxiety and given strong anti anxiety medication. It wasnt until I could only eat pureed food for over a year and then started choking on that, I went private and got diagnosed. I'm glad you got diagnosed relatively early on this!

I too take a brown inhaler and have omeprazole. However that didnt work completely. The reaction by your body to certain foods is the cause so you will need to find the foods that cause it and remove from your diet. Read up on the 6 Food Elimination diet. You remove all wheat, dairy, eggs, soya, nuts and fish from your diet for several weeks and then reintroduce one at a time to see which is causing the issue. Unfortunately for me it was all 6 so I eat a limited diet but I can actually swallow solid food now and I don't get anything stuck for days like before. I can tell if some of my food is contaminated within minutes as my swallowing goes bad again. It's a lot easier to obtain free from food stuffs now there's lots of health fad going on, I can even eat at some restaurants who offer gluten and vegan options.

I would say after the meds and the diet it took about six months to feel 100% better.

I hope you don't need to have a dilation if the medication works for you but a friend of mine has had it done and he said while it was painful after the benefit in terms of being able to eat properly again was totally worth it.

I also have two other chronic illnesses...because it's an immune disease you're more likely to have other immune diseases go with it. Just lucky I guess!

All the best.

Good advice from Chart01979. I have been prescribed the new drug for eoe called Jorveza 1 mg orodispersible tablets. This has helped a lot and put me into remission. It may be worth asking if your dr can prescribe this for you. I also monitor if I get reactions to food/enviroment issues and then avoid. For instance I am allergic to prawns so stopped eating them. i also find some bread/bread products stick in my gullet so try to avoid. Its not perfect, but a balancing act to prevent eoe getting worse and altering my oesophagus further.

Hope that helps :)

KasiaUK
KasiaUK
in reply to clr20

Yes, Jorveza is basically the same as the budesonide slurry in tablet form. The Gastro can also prescribe it for children. I’m glad it works for you. My son’s EoE is now controlled with diet well, but his reflux is very bad. Hopefully he will get better soon as well. 😊