Newly diagnosed with eosinophilic oesophagitis.

I have had problems with eating all my life. I have never been listened to until this year. I am now 50 years old and it's only because I have been debilitated by painful swallowing that has gotten worse year on year and I said no more to antacids and proton pump inhibitors because they made no difference, that I am finally getting somewhere.

I have suggested many times that I actually have food allergies. I have often had adverse reactions to foods, medications and everyday household items. No one believed me, until a couple of years ago I was covered in hives, head to toe!

Now, perhaps, I will get the help I need to get well, whatever that might feel like. I can't remember a time when I actually didn't feel ill, tired out or in some sort of discomfort or pain. This is my 'normal'! Still got a long way to go, but I think I'm going in the right direction now.

[Charto1979]

Hi. I can empathise with your story. I have had swallowing problems and throat pain since I was a teenager. I was given omeprazole for reflux and the when this didn't work it was assumed to be an anxiety related condition and I was given medication for this. This lasted for 15 years until it got to the point I could only swallow purees - baby food. Luckily, my employer started offering private medical insurance so I went private and got EoE finally diagnosed after an endoscopy with biopsy. Unfortunately the insurance didn't cover EoE but the private Gastro doc recommended a steriods inhaler (to be swallowed) and by NHS GP now provides this. The steriods only improved things 25% though so I had to read up and now follow the 6 Food Elimination Diet. You basically cut out 6 food groups (wheat, dairy, eggs, nuts, soy and fish) then introduce 1 back at a time. Whatever sets off your symptoms again is to be avoided for life. Unfortunately I reacted to all 6 so I follow a strict diet but I can actually eat solids again without choking or getting a blockage. Plus my diet is so much healthier now I have to cook everything myself and not eat processed food. It was a big change in my life for sure and sometimes it is hard (and expensive!) But I feel I can managet my condition now and not have to worry at mealtimes.I also feel a bit vindicated in terms of my previous anxiety diagnosis - it wasn't just in my mind! I would advise you to read up on EoE as much as possible as GP's tend not to know much about it. There is life after diagnosis!

[KasiaUK in reply to Charto1979]

Hello. Sorry to hear about your struggle. My son has been diagnosed with the same condition after the food got stuck in his oesophagus. He had problem with swallowing foods and also coughs after every meal (it doesn’t go away with PPI’s or antacid meds).

The doctors suggested the elimination diet which he’s been on for 2 months now and it has improved his swallowing 100% but the cough hasn’t gone away. We are waiting for the NHS trust to approve steroid treatment for him.

I’m not sure if you are aware of new medication for EoE which is now approved for adults. It’s called Jorveza(orodispersable Budesonide) and the gp can prescribe it. Unfortunately my son is under 18 and not allowed it. If I was you I’d ask my doctor about it. You never know it may make a big difference.