I get the sense that my EoE is very slow/maybe even mild? I see posts on here of people eating a trigger food and not being able to swallow a few days later.

My experience was a slow progression over about a year and a half of swallowing getting harder. To the point of almost daily impactions. I did have heartburn issues on the regular and took tums almost nightly. During my scop they dilated me and I found immediate relief and went back to eating anything I wanted. A few weeks later I was prescribed Omeprazole and told to eliminate Wheat and milk. I am rather weak willed and didn't really stick to a good elimination diet for like 2 months. Still to this day I don't have any issues swallowing. Maybe occasionally I feel a BIT of a slowdown but that is it. (They only dilated to 15mm with a goal of 20mm they said). So that being said, I'm hopeful the diet isn't necessary and I can deal with just the Omeprazole.

Is there anyone here who is treating only with a PPI that had a similar experience with a slow forming stricture?

Or is there anyone with a confirmed food trigger that has a slow forming response similar to me?

Hello, I hope that you are well.

I've been sampling several formulas and I'm able to tolerate those I've tried very well.

I want to gain weight in the healthiest way I can. While comparing the formulas, none of those I've read so far list the number of grams of sugar contained. The nutrition label reads "__g Sugar ". It is strange to me that they do not list the grams of sugar. Other brands like Compleat do.

Most of the Peptamen formulas taste very sweet. Is there a resource someone can link that lists the sugar content of the peptamen formulas? I emailed my question to Nestle/peptamen and haven't heard back yet.

I have both a medical doctor and a dietitian through that doctor's office.

Thank you for taking the time to read my question. I wish everyone good health.

Good Afternoon -- I'm not really sure where to begin with Reddit, but I saw this community and I need to speak to people with the same thing as my son.

He was diagnosed with Eosinophilic Esophagitis about a year ago. It had gotten so bad before we found a doctor who knew what it was and did the tests to confirm. He went from throwing up three and four times a day for months and months, to not throwing up at all after being prescribed Dupixent.

He has been on the Dupixent PFS 300 for about a year. The injections hurt but he doesn't mind because it gave him peace after so long. At the end of September, my insurance and prescription provider started demanding all sorts of things to continue the coverage. His medication stopped for about a month and half. He started throwing up again daily. We finally have all of that resolved and he has had two injections over the past two weeks. However... he is still throwing up, sometimes two and three times per day.

Has anyone else experienced this? Does his body just need time to get reacclimated to the medication? The dupixent was working just fine before the lapse. I'm turning to Reddit because his doctor isn't wanting to see him anymore because he turned 18, and now I am on a waiting list to get him into a new patient visit with another doctor.

Any suggestions, knowledge, information, or just.... anything... would help. Thank you! Apologies for the lengthy post.

22F, diagnosed with EOE when i was 11. been on jorveza for a year or two & wonderfully just advised by my GP i have osteopenia.

anyone else been told this? or been diagnosed with osteoporosis whilst on jorveza? did they take you off it? silently crapping myself about what’s going to come next😬

I was texted that I had a prescription for Eohilia ready for pick up today and it said balance due was almost $2000.00. Previously my insurance Blue Cross paid it 100%. I called my insurance provider and was told Eohilia is considered a category two medication and they will now only pay $400.00 of the original price before insurance. Has anyone else had the same issue with getting Eohilia. The last endoscopy showed no eosinophils in my throat, showing the the Eohilia is working so I'm scared to just stop taking it.

I dont really like turkey all too much but im unsure if I am allergic to pork, last time I mentioned I may have an issue with beef people told me it was unlikely and that it was probably something else and that meat just gets stuck more often not necessarily that it is causing the allergic reaction. I have my families thanksgiving tomorrow and to my surprise my cousin actually has a dairy allergy so all the food my aunt is making will be plant based dairy products so I can eat everything. Just need to know if it would be likely that I could be allergic to pork. I know everyone is different and it is always possible, just want to know what would be the chances.

Hi all So after a year of on and off mild swallowing issues (mainly once a week , not related to a specific food) with one a bit severe issue like 4 months ago , I decided to perform endoscopy with a 2 biopsy samples confirming an EoE :

Lower esophagus biopsy - 50 Eos/HPE

Upper esophagus biopsy - >15 Eos/HPE

No visible damage to the esophagus

Results came to me out of the blue as for over 40 years never have I had any swallowing issue and I eat EVERYTHING. Consulted my doctor and he suggested to start treatment with PPI for few months and come back. I was a bit skeptical about that treatment And went to an EoE specialist who strongly recommended the use of Jorveza instead claiming this is way more focused on EoE and has great results.

I haven't had any swollowing issue in the last 4 months (ever since I had that single severe issue) and I was not under any treatment or diet. Both doctors said that it does not matter and the infection does not go away just like that and I am likely to experience symptoms again out of the blue therefore it must be controlled to prevent more damage.

Did you guys ever experienced such "silent" EoE ? What do you think about the treatment options? I tend to go with the Jorveza approach although i am afraid of the side effects of steroids compared to PPI (specially long term given it is a new medince)

The specialist plan is :

1 mg twice a day for 3 months

Redo endoscopy to confirm remission

0.5 mg twice a day for 3 months

Redo endoscopy to confirm healing.

Lay off Jorveza slowly and start food control especially focusing on dairy product prevention claiming this is he most common trigger (which really makes me sad as I am a big fan of dairy food)

What do you guys think about my case ? Especially about the treatment plan ? What are the long term plans to treat EoE from your experience?

Thanks alot !

I ruled out possible allergies with IgE blood/skin tests. Everything is negative and my allergist is convinced it can’t be an allergy since I don’t get rashes. But when I eat apples, I feel immediate bolus/throat tightness. I can breath just fine and I don’t get any other symptom. In the past I thought it was EoE acting up, but these days I reintroduced wheat and dairy and felt fine (aside from the stomachaches and nausea, which are still 10x times better than bolus for me). It scared me how well I was feeling suddenly. I told myself “well, let’s try an apple at this point” and the symptom showed up immediately, like 1/2 minutes after taking a bite. Not too sure what is going on?

Lots of questions as i struggle to wrap my head around this. At the beginning of this year i had an issue requiring i go on miralax long term, and since then i went from no heartburn at all to some every couple months. Then, in august i had a trigger of the worst heartburn ever and it just didnt stop. Got a scope, this is my diagnosis and i see the dr in jan for next steps.

Risks/side effects of meds long term? I have an extremely hard time with my diet so i dont know how im going to survive long term like this with diet restrictions. More than just "ew gross" most foods outside my comfort foods make my physically ill. Things i know i can eat as an elimination diet are corn, potatoes (depending on how theyre prepared), rice, pork, maybe chicken (i got bad food poisoning last time), and shrimp (actually i eat it breaded so maybe not?) i cannot see a future like this, even if i could eat this way nutritionally it seems poor. Is permanent elimination the only course of action?

Why after so long? Im 28, never had issues before. I feel like the onset was extremely sudden. Is it normal to not have symptoms for so long?

Could miralax play a factor in this? This is the only new medication ive added prior to this and my diet has been the same my entire life. I had no heartburn at all before starting this med so the diagnosis was a huge shock.

Could this be purely environmental? The only other changes in my life are that two years ago my outdoor only farm dog had an injury and was finally allowed to live inside in my room (however for 7ish years we already had my mothers dog in the house, but he did not interact with my room. My dog is limited to only my room because of her dogs aggression). The other thing is, after taking allergy shots for many years now, i fulfilled a lifelong dream and got a few terrariums to keep invert pets. Which could have brought more mold/plant allergens into my space? I did this in july, and the extreme heartburn started in august. Is this coincidental or a concern? While i could, with lots of pain, rehome my inverts should i narrow their homes down as triggers i just hate the thought of it. And my dog is out of the question, shes never going back outdoors.

Do i have to eliminate environmental allergens? This weighs on me a lot because my allergies are severe. When i have allergy attacks i spend the whole day mindless in bed, sneezing so hard my ribs hurt with an unstoppable runny nose and feel almost feverish. My main triggers are grass/tree pollen & cats followed by pet dander, mold, and dust at slightly lower levels. For example cats almost send me to the emergency room but dogs are usually fine as long as im not rubbing my face on them and such. My allergies are unavoidable, i cant NOT go outdoors and i will never get rid of my dog.

If you are limiting your diet how often do you "cheat"? I cant imagine giving up my favorite pizzas, desserts and restaurants for life. Id also like to add i highly suspect i have some type of eating disorder or mental illness, as my reaction to foods outside my "safe" foods are fairly extreme, and i rarely add new foods to my list. I am not trying to be a wimp.

I know this is different for everyone but how are YOU coping with this? Right now i feel quite hopeless. Cried a lot. I dont see a light at the end of the tunnel right now and its very discouraging. I suppose i also just needed to vent. Thanks to anyone who read this massive wall of text!

Who is ready for a cheat day today?! 😏 Happy Thanksgiving!

I am wondering if any of you have experienced the feeling of a healing esophagus? I assume the esophagus will restructure itself to the normal way if we leave out all our triggers?

Can we feel that restructuring and can it be mixed up with EoE Symptoms?

The reason I ask is that I think I found one of my main trigger and avoided it for 1,5 weeks so far. I think I feel better daily, my swallowing is improving for sure but at the same time I get some kind of tension in my esophagus which i am unsure how to feel about.

Heading into Thanksgiving Day visiting in-laws with a turkey/chicken allergy. Fingers crossed it goes well. Due to a lack of understanding, no alternative foods are ever offered (it's not anaphylaxis so it's not life threatening) and since I'm from out of town I can't make my own food - and it would be considered terribly rude to order DoorDash pizza. And I admit there is a lack of control on my part because who doesn't love Thanksgiving dinner? I ate it for 40+ years not knowing I had EoE.

Anyone else have zero control sometimes? I wonder if I should take benadryl or something before the meal...? The weird thing is that I might be ok. Probably won't have issues today but I could tomorrow. My symptoms are well-managed most of the time, and avoiding triggers is a daily goal. This disease is weird with its delayed and cumulative reactions to triggers. It's hard to explain to other people without sounding like a high maintenance nitwit so I usually don't bother trying.

Just wondering how you guys get on with caffeine? I’m a tea lover but notice that if I drink it then the feeling of something being stuck in my chest and back really intensifies :(

Hello everyone, I’ve had EOE for 20 yrs now and have been managed it well with dilations, diet and budesonide. But recently I have been having hard time eating. I take a few bites then I feel pressure in my chest and feel like I can’t eat anymore i also get this sour taste in my throat and it’s burning. I’m having chest pain. I have taken budesonide but not working this time. Has anyone experienced these symptoms with EOE, or does it sound like a different problem?

I was just recently diagnosed with EOE, and the only reason I got checked was for the occasional food impactation.

Other than the occasional food impactation, I do not have immediate reactions to foods. So this leads me to my question, is anyone in the same boat? How hard is it to do an elimination diet with minimal symptoms?

Hey everyone. I’ve been to a few doctors now and I just can’t seem to find one who is thoroughly educated or studies EOE. I want to go the 6FED route, but my doctors keep trying to push meds and don’t recommend additional endoscopies to get scoped. I want concrete answers.

Do you have any recommendations for gastroenterologists in Southern California that will go the 6FED and scoping route?

Should I take my Pantoprazole in the days leading up to my endoscopy? If I take Pantoprazole will it mask my condition and thus the biopsy won’t show EOE?

Probably silly and might just be exposing myself as a pansy ( I am ), but I'm wondering how the experience of the injection itself is for you all? For me, it's one of the most painful needles I've ever experienced (and I've had root canals and needles in my eye). I inject into my thigh but read somewhere that the belly is more common, although that seems like it would be worse. I told my GI doc and she was surprised and said nobody had ever complained about that before. My first thought was "damn, and this is also prescribed to children".

Other than that it's been great overall, main symptoms have mostly abated. I've had a few coincidental issues that seem counter-intuitive, such as weird itching episodes and rashes when I've never had either in my life before, and my asthma feels a little worse in general lately. But even if those are direct side effects (not saying they are, I know that Dupixent is considered a treatment for them), it's still worth the weekly almost-hyperventilation causing jab.

I recently underwent an upper GI endoscopy procedure due to recurring episodes of dysphagia, and the lab result I received this morning reads "The biopsy of your esophagus shows eosinophilic esophagitis - which may be an allergic response or the result of gastric acid reflux." There are no signs of Barrett's esophagus, no pre-cancerous changes, no dysplasia, no advanced changes in the cell structure, and no evidence of Helicobacter Pylori in the stomach.

I've been prescribed Flovent (fluticasone propionate) and Prilosec (omeprazole), and I'm being referred to an allergist to try to find potential allergic triggers.

Immediately using a glucocorticoid and a proton-pump inhibitor without first trying to see if I can remedy my issues with an allergist seems like throwing the kitchen sink at it so to speak. Even if the medication helps improve my symptoms, how will I know what's actually causing them? Wouldn't it make more sense to try dietary changes first, and then move on to one medication at a time as needed?

Would an immunologist be useful if my symptoms are an immunologic response to something?

I'm unsure of my next steps because throwing medicine at health issues hasn't been helpful for me or family members on aggregate. I'm hoping somebody with experience with EOE has some insight for me, i.e., what would you do if you were in my shoes?

I’ve been having EoE symptoms for over a year now, with a very specific trigger food (legumes). It came on very suddenly as I’ve been eating legumes my whole life. The pain whenever I eat it is almost unbearable- horrific chest pain, can’t swallow anything and sit with a bucket next to me to spit, have to force bites down with water (learned not to do that the hard way), hiccups and burping. It’s a whole event.

I had a huge attack 3 weeks ago which prompted an endoscopy last week and the results were totally normal. I’m both extremely relieved and also annoyed because then what’s happening to me? Am I just randomly allergic to legumes? I have all the symptoms but now no way to find relief.

Has anyone had EoE but tested negative? Are there other tests? I’m feeing defeated because I already have anaphylactic reactions to several foods and now I’m worried about eating anything.

Any advice would be helpful. Thank you!

Has anyone ever experienced seemingly increased sensitivity or more frequent allergic reactions when on high dose ppi (the normal kind, not necessarily the EoE kind. So hives, chest/throat irritation, itchiness. etc)?

I have now twice had an allergic reaction to food (eggs) that came up negative on my prick test and both times it was a couple days after starting high dose of ppi. Keep in mind this was definitely a 'normal' allergic food reaction, not FIRE or an EoE flare.

Similar but different: does benadryll or some other antihistamine seem to help contol anyone's EoE inflammation and aid swallowing?

Working with a litany of doctors at the moment to figure out wtf is happening to me and just curious if anyone has similar anecdotal experience.

Hello, I am a 16 year old male who was just diagnosed after an endoscopy. I had the endoscopy because I am trying to figure out my IBS not because of EoE. I haven't really ever noticed symptoms of EoE, but when I looked into it it appears that some of my IBS symptoms might be an indirect result of EoE. For example, I get bloated after eating or drinking anything. I also have classic IBS symptoms such as constipation. From my reaserch it appears that this is fairly common but was wondering if anyone has fixed these symptoms by fixing EoE. I was also wondering How long term treatments work? Will I need an inhaler forever? How do I figure out my trigger foods if my throat feels ok? Thanks for the help!!

So I’ve known I’m allergic to dust for years, it triggers my asthma and brings out lots of other symptoms such as a tight throat, constant phlegm, hoarse voice. Budesnide didnt agree with me, but I’ve just started a huge house renovation so I’m surrounded by my trigger constantly and what was previously manageable is no more! Has anyone found PPIs helped with an environmental trigger? Anti histamines arent seeming to do too much to relieve my symptoms

I do not see anyone talking about localized sternum pains happening off and on daily. Searching using ai, mentions it however I prefer talking to people. Do eoe. Cause localized daily pains or is it a reflux erosion thing?

Seeing Dr end of dec however the on and off pains is really getting me

Looking for advice on reintroduction

Hey fellow EoEians,

I was diagnosed with EoE last year after a food impaction led to an emergency EGD w/biopsy. I’ve ruled out acid reflux/GERD by using a PPI. I’m off the PPI and only doing 6FED now. I’m trying to solve this with diet before considering other medication. I’m currently still eliminating dairy, wheat, eggs, tree nuts/peanuts, and fish/shellfish.

After reintroducing Soy, my latest biopsy was all clear for EoE. No eosinophils in the biopsy. So, I need to decide what to reintroduce next. I’ve talked to my doctors and gotten conflicting responses so I’m coming here for more advice. My RN through my GI said maybe try Wheat, and my Allergist said to separate fish and shellfish into two categories and try shellfish. All of the EoE 6fed diet guides online keep fish and shellfish in the same category though?

Nuts - Oral Allergy Syndrome (OAS) responses to some nuts (almonds) and anaphylactic responses to other nuts (pine and macadamia).

Fish - Anaphylactic responses to tilapia but have never found another other fish that does this. (Eaten tuna, salmon, bass, catfish all fine)

Eggs - Somewhat raw eggs like over easy yolks cause OAS response. Baked goods with eggs and fully cooked eggs do not.

I know that EoE is another type of response from anaphylaxis and OAS, but I can’t help but wonder if there may be some crossover. I also know that dairy and wheat are the most common triggers (which is why my allergist is recommending shellfish).

Does anyone have any advice here or maybe just some common experience? Thanks for reading :)

After reading this sub a lot I think I finally found cause of my troubles.

However I couldn't find answer for few questions:

1. Why some foods pass cleanly while others stuck at first bite? If esophagus is physically narrower it shouldn't matter that much right?

What's more - I often have trouble with just first bite, if it pass then rest goes smoothly (FIRE?). Or breakfast is troublesome, while dinner is not, etc. And that leads me to another question:

2. Is it possible that some of my problems swallowing are psychically induced? I noticed that if I forget about them, they aren't as severe. But slightest obstruction makes me aware, and puts me in full choke mode.

I must yet go to IG dr. what I have for now is higher eosinophiles (from blood test) and narrowed esophagus from endoscopy (about three years ago)

We have all had that moment where we are eating something, or trying to swallow a pill and it gets stuck, or feels like it does.

My question is, what are some of your tips and tricks for a.) getting it unstuck and b.) relaxing the throat after don’t doesn’t have that swollen “I think I may still have something stuck in there” feeling?

Is it a drink, a medicine, a breathing technique?

I am having a hard time thinking of what I can make, as of now all I really make is oatmeal, baked potatoes, grilled chicken, spaghetti, and sandwiches on gluten free bread. I also don’t know if I can have eggs. If anyone has any frozen meals they like let me know too!

Hi all! So my doctor prescribed my 20mg Omeprazole 2x a day, and a Budesonide Slurry 8mL 2x a day for 6 weeks for my EoE. And now that I have it - I have no idea what I'm doing. Please help me! It's a liquid in a bottle in my fridge and I have no idea what to do with it - what times of day do I take it? How do I take it? I've read some of you mix it with honey/splenda/applesauce? Am I supposed to do that? Is that when it's not compounded or when it's mixed a certain way? It says no food 30 minutes after, does that include beverages?

Thank you for your help!