r/EosinophilicE

I have an eosiphilis count of over 90 in my distal esophagus only. Mid and Proximal esophagus are normal.

Long history of GERD (+10 years)

I often flare up more over rice, oats and legumes more than over dairy, eggs and wheat (even tho dairy do give me issues at times).

One gastro suggested the eosiphilis are due to reflux and not allergy so he gave me PPI and H2 blocker regimen. But it made me feel worse. Bloated + more chest pain.

Tried fluticasone for a month. Not sure if anything changed.

Dont know what else to do.

Anyone else with a similar pattern?

New here. Anxiety so I’m obviously researching before I have a diagnosis. I guess I tend to do things a little backwards.

2019 choked on a pill, thought it was a fluke. 2022 started choking on certain foods (most often meat and hamburgers) & knew a parent of mine had food allergies so I set up food allergy testing. Negative for everything. Kept periodically choking but got really good at taking small bites, lots of chewing & chugging water after every bite. Until July 2026, choked on another hamburger to the point where I couldn’t swallow more than a little bit of liquid. Eventually got it down but was sore for days. Ended up getting my first endoscopy today. They dilated a ring and a stricture and took a biopsy. I was groggy but I remember the dr saying he thought it was EoE based on what they saw & because I have eczema too.

I guess I’m asking how common is it for someone to have no food allergies but have EoE? I know it could be environmental allergies too. I have been on a liquid diet for a few weeks after my last choking occurrence because everything felt like it was getting stuck. I was so excited to get dilated and get back to solid foods but now I’m nervous that it won’t be as easy as I thought lol. I need some hope because I’m embarrassed about how many times I’ve cried over food in the last month.

Hi Everyone.

I’ve been on a dairy-free elimination diet for EoE for about 6 weeks, and it’s going well—I’ve been cooking all my meals at home to avoid any cross-contamination. I have to eliminate dairy for 3 months to see if dairy is the trigger food. I have a couple of big events coming up, including my sibling’s wedding, where I’m part of the bridal party and will be at the venue all day, as well as at the rehearsal dinner.

I haven’t eaten at a restaurant since starting this dairy-free elimination diet, so I’m a little nervous about navigating catered food and restaurant/diner meals without slipping up. Do you think it’s realistic to eat at restaurants/diners and the wedding venue while staying strict about avoiding dairy (including cross contamination)? And if so, what’s the best way to order carefully and avoid cross-contamination when eating outside the home?

Any tips from people who’ve dealt with a similar situation—especially at weddings, rehearsal dinners, or restaurants/diners—would be hugely appreciated!

Thanks!

After 2 years of horrible acid reflux, as well as other symptoms I finally got an endoscopy and received this diagnosis today. They didn’t give me much info over the phone they sent a prescription and scheduled a follow up appointment 2 months from now. What should I know? What does this mean? I’m a 24 year old male.

Sorry in advance for the long post.

Tl,dr - poor informed choice provided by doctor on treatments for EoE, is this normal? should I go elsewhere?

I've been with the same GI doctor's office for 2 years now. My symptoms were pretty under control for the first year, so it was just check-ins. I have been taking a PPI twice a day for years. I started having some mild symptoms and wanted to try some further medications. Since then, I have had multiple experiences with my doctor that made me question whether I should find another practice.

They immediately wanted to prescribe me Dupixent. When researching Dupixent, I saw that a side effect is an increase in cold sores. I already deal with cold sores and have done a lot to reduce these breakouts to 2x a year. With how horrible I find cold sores, I'd rather have EoE symptoms than cold sores more often. I already can barely eat with cold sores due to pain. When I mentioned this, my GI Dr said that she hasn't heard of Dupixent causing this. I found this baffling since it literally is listed on the website for Dupixent.

At a later appointment, the same conversation happened, and this time, the Dr said they have not had anyone experience side effects, but everyone they work with on Dupixent has great experiences with it. This also baffled me since anecdotal evidence is worthless, and I have no clue how many people they actually work with that have EoE. They could have 2 patients for all I know.

I finally got them to prescribe Eohilia. I had a heck of a time getting this medicine on a regular basis, and I also sucked at compliance. I got really stuck on it needing to be refrigerated, and it made it terribly hard for me to remember to take it. I just could not get into a routine to take it. In this time, my doctor left the practice, and I was provided a new doctor at the practice.

When I had a follow-up appointment, I shared all of this with the new doctor and asked to try either a fluticasone inhaler or the budesonide respules that I would like to make my own slurry out of. I told the doctor that this would fot better for me because I can actually keep these medications with all my other ones so that I can maintain better compliance because it would fit into my medication routine. The doctor again brought up Dupixent, to which I declined again. Then they finally said they would look through the medication list to find a fluticasone med that fits with my insurance.

The next day, I get a call from the nurse that there was not any fluticasone inhaler that they could send to the pharmacy and said that we can either continue on the PPI until things get worse, try Eohilia again, or try Dupixent. This seemed like an ultimatum and made no sense to me because how is there not an inhaler that I can be prescribed? I asked again about the budesonide respules or if there was a different inhaler medication. The nurse said she would discuss it with the doctor. Then I see Alvesco was sent to my pharmacy. However, this medication is not covered and was expensive. At this point, I am extremely frustrated since this doctor is trying to tell me there are no other treatment options basically besides Dupixent.

I call my pharmacy benefits manager and go through a list of medications that I know can be used for EoE (many off-label) with them to see what is covered under my insurance. They said that the fluticasone hfa inhaler was covered. They said that Alvesco needed a PA and that another medication I asked about would need a PA.

Now I am mad that my doctor told me there was not a fluticasone inhaler they could send to the pharmacy when the pharmacy benefit manager just told me there is and it is covered.

I sent a message to my doctor in the portal and told them I talked with insurance and that the fluticasone hfa was covered and the other meds required a PA. I also sent over the names of some other meds like Qvar that I had found in my research that I would also like to discuss before considering anything else.

Now I have the fluticasone hfa inhaler prescription at the pharmacy.

Has anyone else experienced a provider that tries to push only the main 2 branded treatments and acts like nothing else exists? Am I crazy to be as upset as I am about this?

It just feels like I am being lied to or that I have a doctor who is lazy. I don't feel like I should have to work harder than the doctor to get treatment that works for me.

Hello all! My allergist broached the topic of EoE today after I described a reaction I had from eating egg. Pain in my upper chest and also a feeling of pressure/indigestion that persisted for a full day, maybe longer. I’m wondering if any of you who are diagnosed can relate to those sensations? I don’t feel that I choke often or have trouble swallowing. I have limited time and I don’t know if I should persue a diagnosis based on this alone. She brought it up in part because I’m interested in oral immunotherapy and it can worsen EoE in those that have it. Any experience or advice appreciated!

my eohilia got warm in the car. not scalding but warm, and I don’t know if I can take it. I called takeda and they don’t know either. it was 2 hours max

anyone taken it after it went above recommended temp?

tl;dr scheduled endoscopy to test soy, but realized afterwards that i will only have 4 weeks to add back in soy (i have had 6 for the other foods)

longer version: i took a break from testing over the summer so i could travel without strict restrictions. i am vegan so i am only testing nuts, wheat, and soy. so far i have tested nuts (fine) and wheat (confirmed trigger).

as i recall, at my last appointment, my GI doc said that once i was done traveling, i would need to strictly remove wheat and soy again for 2 weeks, then continue to strictly avoid wheat while adding back in soy for 6 weeks (total of 8 weeks).

however, i just asked the office to confirm, and they said that in my notes it says:

1. Stop gluten for 4 weeks after her vacations this summer
2. At the point, introduce soy for 4-6 weeks and will proceed with EGD afterwards

so, with the date i have my follow-up endoscopy scheduled, i could do 4 weeks wheat/soy free, then 4 weeks with soy (but no wheat).

my question is, is the 4 weeks of re-introduction long enough, or should i re-schedule it so i have 6 weeks to add in soy? i see 4-6 weeks online but i'm not sure exactly what that means. i honestly don't think my doctor is that experienced with the dietary route, and the answers i get from him are not clear.

Hi all! Just looking for others’ experiences. My husband was diagnosed with EoE about 6 years ago. We had a baby 5 months ago and he likely has cow’s milk protein allergy. He’s had a classic food allergy reaction (hives) and delayed reactions (vomiting, reflux, mucus and blood in stool). Anyway, I’m just wondering if anyone on here who is dx with EoE has had children with food allergies or intolerances?

Good morning,

I’ve been having food impactions for many years (probably 8?) but have only been increasing in severity as of late. Last night I went out to eat and got some fettuccini, and I knew instantly the first noodle I ate something got stuck

It’s been 16 hours and I still don’t feel normal. I don’t know if it’s passed or not. I’ve tried drinking some but it’s horrifying. I don’t have any pain really but just this weird discomfort. I don’t know if it’s anxiety caused or what but this feels awful and frankly I’m terrified to ever eat or drink again and I need advice. Sorry.

Just from your experience since getting into a GI would take weeks.

I’m in the process of being diagnosed with EoE - a recent biopsy came back with the signs - and I’m wondering if anyone else has had a similar experience with drinking water. I’ve always found it hard to drink water because at times it has felt like I was swallowing plastic blocks. I find the slightly thicker texture of milk generally easier to swallow. Has anyone else experienced this with EoE? Or is it unrelated?

Last year I got an endoscopy due to some pain I was having under my left breast. My results were that I had active esophagitis and my eosinophils were greater than 60, mainly were in my distal esophagus (middle was 15, and upper was 3). My doctor thought it was GERD and put me on PPI’s and I do think it helped a little bit.

Fast forward I got pregnant and had a baby! My symptoms got sooooo much better in pregnancy. Had plenty of acid reflux but I wasn’t having sternum pain with swallowing anymore.

Now that I’m 13 weeks post partum, my symptoms have come back full force. Pain again behind my sternum that only seems to get better when drinking soda with meals. Also had an episode of a peanut butter sandwich getting stuck for almost 20 minutes until I was able to properly swallow it down. It also feels like there is something in my throat all the time. Started taking my PPI’s again last week and havent seen any symptom relief yet. Is this in fact just GERD or EoE?

I posted my experience with EOE here before and I have been on dupixent for almost 6 months and have had some success. Still have issues with coffee and dairy but it’s at the point where one cup in the am won’t kill me as long as I have my pantoprazole before hand. My biggest issue stems from when I believed my symptoms were a heart attack and since then even after learning it’s EOE I still can’t shake this health anxiety. Has anyone else experienced this and how do you deal with it?

EDIT: u/Brave-Ad3922 is Italian allergist, Dr Nicola Verna. He’s new to reddit, so I’ve shared this on his behalf.

The OP contains a video, which is why I couldn’t do a normal repost.

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Most teenagers with eosinophilic esophagitis never report dysphagia. They just quietly change how they eat.

I'm an allergist in Italy and I mostly see kids and teenagers alongside adults. Something that keeps striking me is how rarely swallowing difficulty comes up as a complaint. It almost never does. It surfaces halfway through a visit booked for something else entirely, usually asthma or rhinitis, once you start asking in detail about how someone eats.

The reason is pretty simple when you think about it. If a kid started compensating at nine, by fifteen this is just how eating works for them. There's no "before" to compare it to, so there's nothing to report. What you get instead is a set of habits: sipping water with every bite, cutting everything into tiny pieces, skipping meat and crusty bread, chewing far longer than anyone else at the table, struggling with pills. The 2025 ACG guideline actually lists these as things to ask about when taking a dysphagia history, which I think is the more useful framing, since the person doing them won't volunteer any of it.

The part that bothers me is the timeline. Reported median delay between symptom onset and diagnosis runs somewhere between three and eleven years depending on the cohort, and disease duration tracks with stricture formation. On the other hand, in a cohort of 105 patients diagnosed in childhood and followed for a median of eleven years, those who achieved a period of histologic remission developed strictures far less often. Observational, so association rather than proven causation, but it's consistent across studies.

Worth saying honestly: earlier isn't a guarantee. Roughly half of patients on swallowed topical steroids still end up needing a dilation, and there's decent evidence that fibrosis becomes partly self-sustaining once the matrix stiffens, somewhat independently of the mucosal inflammation. So timing matters, but it isn't a clean fix.

Anyway, I made a short video about it aimed at parents rather than patients, because the people who notice these behaviours are the ones sitting at the table, not the ones doing them. Happy to answer general questions about the condition, though I can't comment on anyone's individual situation.

Anyone else who takes dupixent start to notice feeling more sleepy shortly after starting it? One month in and I’ve been getting so tired even after like 7-8 hours of sleep a night…

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Hello, I have been dealing with a swallowing issue for a month now and it's getting WORSE by the day. 2 months ago I could eat solid foods with a little difficulty but now I struggle drinking liquids. I am on a all liquid diet and have been for a month but its even difficult to drink liquids. Im a little dehydrated because I got a blood test done recently and it showed that my protein in my blood was high. I also have really low iron and have lost 14 pounds from lack of eating due to swallowing issue. I went to the hospital recently and they did a CT scan of my brain and it came back normal. They also looked at my throat and said my tonsils are bigger than normal but not touching so you should get a tonsillectomy. I asked my ENT about possibly getting a tonsillectomy and he thinks my tonsils are not the issue and he doesn't recommend me removing my tonsils. So now I'm stuck waiting for my GI appointment in October whilst dealing with trouble swallowing every. single. day. This is making me depressed, sad, and I've been crying daily. The lack of eating has made me very tired, weak, dizzy, hard to remember somethings/hard to think , very hungry, hard to sleep, emotional deregulation, depressed, headaches, muscle spasms, body aches, acid reflux, heartburn, heart palpitations, low energy, and a little dehydrated. Even with all of those symptoms hospitals refuse to admit me and expect me to wait for my GI and neorgology appointments. Everyday is dreadful and I hate my life right now. What do y'all suggest me to do? I can't keep on living like this for months, it's draining🫠

Hi have just joined this forum I have what my doctors think is eoe. So I am taking omeprazole and jorveza steroid tablets. I have been fine with food for other a year until I decided to drink a can of 710 ml monster i had imported to the UK since then I can barely swallow liquids my throat feels phlemy. Has any had similar problem

So, I've been dealing with this for a while and I did the 4FED against my GI doc, who didn't recommend me this since they don't understand so much the elimination diets.

In the first gastro, I had 15 & 21 eosinophils.

In the 2FED, they scaled up to 68 & 53!

And in this third, it was 4 & 6!

So, there is hope. Now, we have to keep introducing food and see what we get!

My gi had me pick up some dupixent samples to try while they see if they can get my insurance to approve it since my body does not react well to ppi+steroid. I was going to try it today “prefilled pens” but I am so nervous I’m not sure how I can get myself to do it. I’ve watched some videos on how to do it and see people suggest icing and then pinching skin together while injecting in stomach. Does anyone have any tips for my first dose attempt? Should I have a family member do it? I’m thinking I should just take a shot to calm me down then do it myself immediately I’m not sure why this seems so hard for me to do I don’t really mind when I get blood drawn.

Update: I did the shot and it was far less bad than I expected. I appreciate everyone’s comments for helping me out I ended up doing it in the stomach. I iced the area briefly before and it was practically painless only the slightest burning sensation.