Had a scope today and the had to dilate me. Boy oh boy and I’m sore! How long does this pain usually last? If it helps then it’s going to be all worth it but right now it’s hard to see the light at the end of the tunnel.
Hi all,
I wanted to share my treatment results in regards to environment allergy triggered eoe. This is not dupixent and this journey has been over years, and is still going.
I have been diagnosed with EOE for about 6 years. No real indication of eoe except for swallowing issues. Was diagnosed and dilated. Was on daily prontix. First 40mg then 20mg with the usual side effects..absorption issues and increased polyps…Tried elimination diet and food allergy test, no effect. Stopped drinking 3 years ago.
Decided to get environmental allergies tested last year and I have many. Started on allergy exposure shots once a week for the last year slowly working up. Have noticed positive results in their progressive tests.
Rescoped last year and had first indication of no eosinophils, but it was unclear if that was just ppi, allergy therapy, or both.
I am happy to say, after weening off to every other day ppi, that I am still showing no eosinophils with the most recent scope.
This is not 100% yet as I’m still partially on the ppi but it’s definitely the clearest indication yet. Next year I will ween totally off the ppi.
I hope this helps someone else.
If you are interested in sedation-free EoE monitoring, you may find this blog post informative. https://apfed.org/blog/sedation-free-transnasal-endoscopy/
My quick background: I have difficulty swallowing, I choke on anything, even air haha. Pills are the worst, and lucky for me I have to take a handful of them twice a day. I had an EDG for suspected EoE. Visualization during the scope showed evidence of suspected EoE and the doctor dilated my esophagus. My biopsies came back negative, but my doc started me on omeprazole. It’s been maybe a month now. Neither the dilation or meds are helping with swallowing.
For those who have difficulty swallowing/choking, and were started on PPI’s, did they eventually help with the choking? If so, how long did it take? Is there anything else that helped with choking? This is miserable. I guess I’m just not understanding how PPI’s are supposed to help with things getting stuck at the top/back of my throat. My doc didn’t provide much info. TIA
Hi everyone,
I’ve been dealing with a frightening squeezing, crushing pain behind my breastbone. I do not have the typical burning or “heartburn” sensation at all — it feels much more like pressure, tightness, or an angina-type squeezing pain. Sometimes it honestly feels cardiac, which has been very anxiety-provoking.
The pain is highly unpredictable and can happen both at rest (sitting or lying down) and during exertion, even something as simple as walking. Because of the squeezing nature of the pain, I underwent a full cardiac workup. Thankfully, my EKGs, echocardiograms, and stress tests were all completely normal, and my cardiologist has cleared my heart.
To investigate a digestive cause, I recently had an endoscopy (FOGD) with biopsies. I translated the reports from French to English below, and I’d really appreciate hearing from anyone who has experienced something similar.
Esophagus:
Stomach:
Duodenum:
Conclusion:
Marked inflammation/redness in the lower esophagus, Grade 1 hiatal hernia, and erythematous pangastritis.
Biopsy conclusion:
Mild chronic inactive gastritis associated with H. pylori infection, without malignancy.
My concern is that despite the reassuring cardiac tests, I still struggle mentally with the squeezing “angina-like” sensation because it can feel so intense and convincing, especially when walking or during physical activity. My doctors believe the inflamed esophagus and small hiatal hernia may be causing esophageal spasms or pressure sensations rather than classic burning reflux symptoms.
Has anyone else had H. pylori, gastritis, reflux, or a hiatal hernia cause severe squeezing chest pain without actual heartburn — especially pain triggered by walking or movement?
And for those treated for H. pylori, how long did it take after antibiotics and acid-reducing treatment for the chest tightness/spasm sensations to improve?
Thanks a lot for any insight or shared experiences.
My 6 year old daughter has been on an EOE food elimination diet for about 2 months and she’s been a champion about it. She’s the sweetest little girl ever and it KILLS me to have to keep her on this diet. We tried the Daiya meatless meat lovers pizza and it was horrible! We’ve recently discovered a couple cheeses at our local grocery store and we’ve used casava flour a few times but we need help. What are the best cheeses, non dairy gluten free options out there? EOE veterans unite and help us out. Thank you!!
I am currently at work and feel extreme fatigue and what feels like someone squeezing my esophagus. I'm sitting down and have to get this whole shift done but I'm really tired!
I recently left the northern u.s(I'm back now) to the Dominican Republic. After a week of drinking and eating their food I felt great and didn't take my fluticsone inhaler at all on the trip down. But after a couple days home my flares are brutal! All I had was yogurt and some juice. What the heck? I was eating yogurts fruits omelets and drinking soda everyday and felt fine in the tropical air. Note I did try the elimination diet with fish,dairy,wheat,eggs, but I think only wheat had a big effect if it was even big. I think the U.S has worse foods and the air quality seems bad. Something about that ocean island air really helped me, but I know living on an island is an unrealistic cure lol
Why did I stop my fluticasone inhaler because of fatigue, asthma, joint pain, muscle pain, lowered motor functions and more. Note I was on dupixent and I had severe tiredness and what felt like numb legs and as a guy I had no drive so felt infertile. This lasted a couple days a week but felt normal about half the week. This weird leg feeling goes away when off meds but my eye is so bad my esophagus hurts and I'm so tired...I last took dupixent like 6 months ago and have some shots which I'm contemplating taking. But my fear is I'll be tired and have to quit working. I have some money saved and can likely last plus do a side gig.
I want to know if anyone has had success in doing a simple diet like eating one or two foods? I would really appreciate it if you could tell me your experience especially if it helped you when in a similar situation like me. Also has anyone stopped their medication because of side effects and were able to heal naturally? Also is there any diet plan for EoE that you know of that will be great for me! Thank you if you read all of this but it's been a long journey and I would love to defeat this disease with everyone and find it possible!
How do you guys deal with food/diet restrictions while travelling abroad?
Like when you’re in a country where the kind of food you normally eat just isn’t easily available what do you usually do? Do you adjust your diet completely, survive on limited options carry stuff from home or something like that?
I’m also currently on medication, so I was wondering if you have certain food allergies is it usually okay to eat those foods for a few days while travelling, or is that generally a really bad idea?
Curious how everyone manages this while travelling long term.
I just got my biopsies and diagnosed EOE
Mid esophagus is a level 5 (no mucosal changes)
Distal is 35 (mucosal changes of EOE)
I have a hiatal hernia and have had GERD forever. I am wondering if a level of 35 could be from GERD just cooking my lower esophagus??
The nurse orders to me was to start 40mg PPI and eliminate dairy and gluten and see how I feel didn’t even offer rescope after just to go off symptoms.
How will I ever know if it was the PPI helping or the diet helping if I do both at the same time?? Seems to go against everything that Iv learned here the past few weeks??
Any advice would be amazing today is a shit day getting the final stamp of EOE. Appreciate you all
I stared having EOE symptoms in Feb of last year. For a long time were treating it like it was an allergy until finally we did an upper endo and got the result that it was EOE. I went to my Gastro and they tried a high PPI does which had minimal effect and then Fluticasone which worked great but after a few months its effectiveness started to fade. I mentioned that I had seen online and here that Dupixent is kind of the go to drug to treat it. She said that basically cause she is at a smaller practice and has never prescribed it before she wanted me to see the foremost expert on esophageal issues in the area she would probably be able to help me get access. She also mentioned that because I was young (29) starting a life long medication wasn't a great idea. She had me try Eohilia which was great at first as well but I am still having flare ups that cause alot of discomfort. It is also only a 3 month long treatment.
I see nothing that notes that EoE goes away over time or as you age so if I am gonna have to deal with this for the rest of my life I see no reason why I wouldn't want to be medicated for it for the rest of my life. I know that there are possible side effects like dry eyes and what not but I really don't see an issue with starting if It means I can swallow normally and generally raise my quality of life.
I am for sure going to meet with the specialist and when I do I want to advocate to get on Dupixent .
Does that make sense? Was anyone else advised in the same way?
34M, moderate smoker.
Since Nov 2025, after taking metoclopramide + fluoxetine, I had what felt like a panic-like episode. Shortly after that, I started developing symptoms that have not fully resolved.
The chest sensation feels more like angina-type discomfort than a typical panic attack.
After the initial episode in November 2025, I switched from fluoxetine to escitalopram, and also used a short course of benzodiazepines because fluoxetine was suspected to be too activating.
Following this change, I felt noticeably better for about 1–2 weeks.
However, in December 2025, I suddenly developed a stronger episode of retrosternal squeezing chest pain, which triggered significant fear and panic. Since then, the chest pressure has persisted as part of the ongoing symptoms.
I am also currently being treated for panic/anxiety disorder with escitalopram.
Even with my history of anxiety, I have never experienced symptoms like this before, which is why I’m confused about the cause.
➡️ Overall, cardiac causes were considered very unlikely.
Despite treatment, I still experience persistent retrosternal chest pressure and dull jaw discomfort, and I’m struggling to understand what is causing it.
What could explain this combination of:
Has anyone experienced something similar or found an explanation for this kind of symptom pattern?
I got sick in January 2026 and didn’t get a diagnosis until after an upper endoscopy in mid April 2026 which came back as EOE (eosinophilic esophagitis).
I was able to couple this with results I had from an allergist from 2024, which told me I was particularly reactive to weed, tree and grass pollens as well as dog, cat, horse and rabbit.
Getting to the grit of it here is what I did to FINALLY start feeling better.
But it has been the cleaning that has made a difference. It was hard work and grueling at times, but I took it room by room and did a thorough job. Including washing curtains, cleaning the vents of the microwave, getting the spaces above cabinets, window tracks. You name it, I cleaned it. YouTube was helpful for cleaning solutions and tips.
So on the off chance that someone is still suffering with their EOE despite trying everything-Highly recommend getting serious about cleaning- it’s been worth it to feel better.
I was diagnosed yesterday after a follow up with my GP and honestly left the appointment feeling a bit overwhelmed and still kind of confused about what EOE actually is. The way it was explained made it sound like PPIs or steroids long term were basically the only options.
When I got home I ended up googling and reading through posts here to understand it better. I don’t really have the more “classic” symptoms like choking on food or impaction. I originally had a colonoscopy and gastroscopy because I was having nausea, gas with bad chest pain, chronic constipation, and this weird fullness/tight feeling in my throat. I always thought the throat thing was maybe my tonsils because one doctor said my throat constantly looked infected, so now I’m wondering if the EOE explains that too. I was really surprised by the diagnosis, especially paired with gastritis in the antrum.
I tried PPIs a couple of months ago and they didn’t do much except make the nausea worse and I felt less horrible off them. They’ve now givem me Rabeprazole to try instead and mentioned steroids if this one doesn’t work or i feel worse.
What surprised me most was diet wasn’t even mentioned in the appointment as something to look at or to go back to the Gastroenterologist. From what I’ve read since, it seems like food triggers can play a pretty big role. I’d much rather try to manage this through diet before jumping straight into long term medication if possible. If I was having major impaction issues I’d probably feel differently, but I’m not there yet.
I wanted to ask how people here approached elimination diets/testing. I’m mostly plant based but do eat eggs and some dairy, so I was thinking maybe starting with dairy and wheat first since that would be the least painful change for me, then moving to soy, nuts and eggs if needed. I already avoid fish and shellfish because they’re known allergens for me.
A few questions:
- If you did an elimination diet, did you still take PPIs/steroids during it or does that interfere with figuring out triggers/re testing?
- Did you do a step up approach or full elimination then add foods back one by one?
- Did you work just with your gastroenterologist or also a dietitian/allergist?
- Did anyone end up finding a trigger outside the common food groups?
- Overall what was your experience like?
Thank you for sharing 💜☺️
My son is almost 3.5 years old and he was diagnosed with EoE last year. He's always had coughing/gagging which sometimes let to vomiting. He still has that same thing, except now, he makes a noise, which is basically telling me he's in discomfort and then he starts to cough/gag. He's been on omeprazole since the end of March and it doesn't seem to be doing anything. He's been on an elimination diet since before he got diagnosed because I figured it was EoE from some of the things he's been experiencing.
Has anyone experienced this coughing and gagging? It happens when he wakes up, at random times, when he talks, he doesn't have to be running or anything. Usually we have to tell him to take frequently breaks because of this. He has another endoscopy coming up next month, but I feel like it's been getting worse.
Hello! I just got back from my GI doctor. My allergist believes I could have EoE, the NP at the GI office I saw seemed to think it was bad acid reflux. I have an endoscopy June 3rd. The NP said to take a PPI (I forget what it’s called). I asked if taking the PPI now will affect any results from endoscopy biopsies, she said no, she believed I needed a PPI immediately.
The lady who scheduled my endoscopy said no I should not be taking any PPI before the endoscopy.
What should I do? lol thanks! My symptoms are fairly bad… burning in my chest and back as food goes down, burning in upper stomach (under breasts), excessive burping, I can feel food going down… in my back, pressure in my chest kind of like I have to burp but can’t…. So my symptoms are fairly bad.. which is why she said take the PpI now, but I don’t wanna mess up the results.
I was diagnosed 14 years ago. My symptoms have been tight/full feeling in my throat and sometimes in my chest, nausea and a weird bubbling feeling in my throat. I’ve never had an impaction even though I’ve had over 100 eosinophils at times. Today was the first time I ever felt like something might get stuck. My esophagus wasn’t narrow at my last endoscopy 5 years ago. Just wondering if anyone has had EoE for years and no impactions. Thank you!
Planning to start GF/DF diet to see if that can control EoE. Talked to my allergist about it and she said 2 things:
Has this been true for any of you guys?
Hi all,
Just moved to Ashburn, VA and I’m looking for gastro/allergist recs for the area that are familiar with EOE. TYIA!
I know i know, you can only figure out your triggers or if you’re in remission by biopsy, however beyond initial diagnosis biopsy i cant get a second biopsy on the NHS and I’ve tried three different medical practices
So we’re onto plan b: elimination
I’m vegetarian, allergic to nuts and eggs so these are already out of my diet, and i realised I’ve not had tomatoes in several weeks- more by accident than intention- however twice in this time I’ve had tomato based dishes, and in the days that followed my heart burn has returned and so has the globus sensation in my throat. It goes after a couple of days, but it’s the only thing I’ve pinned down as being connected to when i get my symptoms
I know EOE is a secondary allergy and the symptoms don’t immediately come on, but this happens within hours and lasts maybe 2/3 days after exposure
Hi everyone,
I'm writing this mostly to relieve the acute anxiety I'm feeling right now, but there is a small ask too: if anybody has undergone EoE diagnosis and treatment in Germany, especially at St Hedwig's in Berlin, I would love to know how it went for you and anything to look out for.
Setting the context, I had my first hospitalization through impaction 10+ years ago. I am British and was living in the UK, and after being treated in hospital they just told me to 'chew better' and dismissed my concerns. I had two more impactions due to steak within the same year.
For years, I had no idea what was going on with my body and just felt like I was an idiot and something was wrong me that nobody else in the world would understand. A few years ago I discovered this community and began to understand the disease. I eliminated all dairy, eggs, nuts from my diet and my symptoms got a little bit better. Every once in a while I could eat a chicken breast or even a fillet steak without constant anxiety and stress.
I went on holiday with my wife to the Netherlands and had my worst impaction yet. It was an almond that had snuck into a salad I ordered at a restaurant for lunch. I literally couldn't eat for 3 days before my wife forced me to go to the emergency room in the Netherlands. I received a endoscopy where they retrieved the almond with a net and advised me to seek treatment when I got back from holiday in Germany (which is where I now live). spoilers: I didn't.
I started self-medicating with Fluctisone and that, combined with the dietary restrictions, massively improved my quality of life. That was in 2022, and this year I made it my commitment to myself and my therapist that I would get this properly diagnosed and treated in Germany. Germany is notoriously awful for helping immigrants receive medical treatment. Despite speaking the language, I have been met with dismissal and refusal time after time. Finally, after literally months of waiting and hundreds of emails, messages, Hausartz visits I have a referral for a hospital appointment at St Hedwigs with PD Dr. Schmöcker.
I am so tense and nervous - I don't want my symptoms to be dismissed but I'm also dreading another endoscopy without any sedation. I still have a recurring trauma from the one in the Netherlands.
If you're still reading at this point: thank you. I'll try and update this post on Thursday evening after my appointment.