r/EosinophilicE

Hello, 36M diagnosed with EOE back in November last year. My only symptom is a hard time swallowing and I’m pretty sure I’ve had it for years as I’ve always had a hard time swallowing food since I was in middle school. Anyways I was put on PPI’s but they haven’t done much, my eosinophils are still high after my last endoscopy. My doc says dupixent is the next step but having to do a weekly shot for the rest of my life sounds miserable. So my question is how bad does this get if left untreated? I’ve lived over 20yrs of my life like this just fine. I can manage needing water for every meal if needed.

I’ve read mixed things that if left untreated I would just have to get endoscopy’s yearly to stretch out my esophagus if it narrows which I’d honestly rather do that than do weekly injections for the rest of my life. I’ve also read that if left untreated it can cause cancer but the research is hit or miss.

For now I’m going to try elimination diet with Aciphex instead of omeperazole and see what that does. But I’m looking into any insight on this, thank you.

I was just diagnosed in February with Eoe and started 6fed on March 1st and have successfully stuck to the strict diet since. I have my follow up endoscopy the 11th and I’m hoping I’m in remission and can start reintroducing food but my anxiety is awful and I have a huge fear it won’t be any better. I’m hoping to hear some success stories from people who have done it and found their triggers, or even stories from those 6fed didn’t work out for and what the process looked like after. I hate the not knowing, so any insight on your experiences might help ease some of this anxiety.

I recently was diagnosed with EoE after biopsies were taken and my eos were 45/hpf. Since then I have struggled to get a clear treatment plan and I’m feeling so frustrated… and honestly I don’t know how to proceed.

Long story short: after my endoscopy my GI doctor prescribed me Protonix and referred me to an allergist. When I asked about when I need to get re-scoped he said most patients feel so much better on the Protonix that they don’t even need to be re-scoped, so I should be good… so clearly I need to find a new gastro because that’s ridiculous.

I was hoping the allergist would give me a better treatment plan, but that didn’t happen either. In our appointment he seemed hung up on the fact that I did not have seasonal allergies, asthma or eczema. I have carried an EpiPen for the last 25 years because of allergic reactions to shellfish when I was a kid. He did a prick test in office and I didnt react to anything but the control. Not even shellfish. So he ended up being very hung up on the fact that I appeared to have ‘no allergies’ (despite having documented allergic reactions from childhood) since such a large percentage of people with EoE have allergies, eczema or asthma. Because of this he went on about how he thinks my EoE is from acid reflux and probably not a food trigger. This felt confusing since my eos were pretty significant even after being on high dose Pepcid for 3 months prior to my endoscopy and per my research being well over the 15/hpf doesn’t suggest acid alone. He ended the appointment by saying well do further allergy testing for shellfish and to take Protonix for 3 months ‘to see’. When I asked about when I need to re-scope he was vague and didn’t really say.

I felt brushed off by him and almost like he doesn’t think I have EoE even though it’s a pretty objective diagnosis based off the biopsies if I’m understanding correctly?!

So now I feel like I need to find a new gastroenterologist and allergist. So if anyone has any recommendations for either in Southern California/ Orange County please let me know.

Curious if anyone that has an impaction is able to voluntarily regurgitate the blockage. I know it sounds disgusting but I can voluntarily regurgitate and try again or spit it out. I have impactions almost daily but never once where I had to go to the ER. Liquids are my fear. In fact just two nights ago I got a sip of water overnight and unbeknownst to me I had blocked due to saliva and went into full spasm when I drank from the cup and swallowed.

Hi all! My son has EoE (diagnosed at 6). He started Dupixent this January and he’s an absolute champ. He’s been so brave, but he’s feeling very discouraged that it’ll get easier. He says it hurts really bad every time. Obviously it is going to hurt, but is there any way to make it more comfortable? We have tried icing the area first, no ice first, distracting (he played his switch during), and nothing seems to make it hurt any less. I read a tiktok comment that it’s the actual medication that burns when it goes in. Is this true? He has had medical issues his whole life, so he is very patient and polite about his shot. If I can make it any easier on him, I will. Any advice?

TLDR: furrows/rings in esophagus and eosinophil count of 80 at GE junction but told it is most likely just acid reflux, despite already being on a PPI for 9 months.

I went to the GI doc a year ago for gnawing stomach pain that was worse on an empty stomach. They put me on 40mg of omeprazole and just told me to keep taking it when the symptoms didn’t go away entirely.

After 9 months of this and some new symptoms (turned out to be SIBO) I insisted on an upper endoscopy.

The endoscopy notes stated “Linear furrows and concentric rings seen in the mid to distal esophagus likely consistent with eosinophilic esophagitis,

biopsies taken at 25 cm to confirm eosinophilic esophagitis.”

The pathology notes for the GE junction said “INTRAEPITHELIAL EOSINOPHILS ARE INCREASED (80/HPF). REFLUX

ESOPHAGITIS AND EOSINOPHILIC ESOPHAGITIS SHOW SIGNIFICANT HISTOLOGIC

OVERLAP IN THE DISTAL ESOPHAGUS. IF THIS PATIENT'S SYMPTOMS DO NOT REGRESS

AFTER ACID REDUCTION THERAPY, EOSINOPHILIC ESOPHAGITIS MAY BE A

CONSIDERATION”. The section on the middle esophagus only noted reflux related changes.

The same doctor that did the endoscopy then said probably acid reflux, let’s try a PPI. When I pointed out that I had been on one for 9 months already, he said ok let’s try a different brand.

The different brand was arguably even less helpful. I have since weaned off PPIs and eliminated FODMAPs for the SIBO and dairy, and am noticing great improvement so far.

I’m curious, does the suggestion that the eosinophil count and esophagus changes were related to acid reflux make sense to you? It seems odd to me, especially considering the rings noted during the endoscopy, but maybe it is more likely reflux since my entire esophagus wasn’t affected? Then again I see people posting here diagnosed with lower counts than that.

I’ve done the elimination diet entirely on my own since my GI has seemingly no interest in encouraging diet changes, only medicine, so I am already considering changing doctors.

edit: I don’t eat fish/shellfish or nuts to begin with, and I happened to not have eaten any eggs recently—so I’ve eliminated 4 of the 6, just not wheat or soy.

So, to be diagnosed with EoE, you need more than 15 eosinophils in the microscope to be diagnosed with EoE, at least in Spain. How many did you have when you had your first biopsy? I've had 27.

I've just had another gastroscopy. Everything looked really good, but I've had that before and then the biopsy tells a different story.

I've eliminated gluten, soy, dairy, and eggs.

Bc I'm in Canada, with free Healthcare - which I love, don't get me wrong, but as a result the waitlist for the equipment is so long, we've been at this for years. I go 4-6 months between eliminating a new food and getting a scoping to see the effect.

It's just been so long. I don't know yet if we'll be moving to fish or nuts next. But once we get to the reintroduction phase thats gonna be another couple years minimum.

6Fed just takes so long here 😭

Hi everyone, I have been in remission for more than a year, but lately i decided to reintroduce a trigger food, which is eggs. My main symptom right now is feeling like i have food stuck in my throat after a meal. I feel like i have to swallow because something is in the back of my throat.

It even lasts for an hour sometimes or longer but i can still eat a whole meal with this feeling.

I have had globus sensation and dysphagia before and it never felt like this.

Any input is appreciated.

Hi! I went to an allergist with suspicion of food allergies. She sent me to GI who ordered an EGD. Here are the procedure notes from the EGD:

Impression: - Abnormal esophageal motility. Dilated.
- Esophageal mucosal changes suspicious for
eosinophilic esophagitis. Biopsied.
- Bilious gastric fluid.
- Normal examined duodenum.
- Z-line irregular, 38 cm from the incisors.
Recommendation: - Await pathology results.

My biopsy was negative/normal

My symptoms:
-Difficulty swallowing: sometimes things won’t go down, instead they go up into my nasal cavity and get stuck. It’s only happened with meds, so after they’ve dissolved they eventually “fall out”.
-When eating or taking meds, I can literally feel everything moving through my esophagus. Many/most times, it will get stuck about the top third or half way down and just hang out there for a while. I can only take 2-3 pills at a time or I will choke.
-I do get reflux, but it’s more in the form of burping. Burping is painful, a bit acidic, and always tastes/smells like the food I’ve recently eaten. I don’t get burning pain in the upper part of my esophagus. I’ve never considered it “bad” or abnormal.
-I will have “allergic” reactions sometimes in the middle of eating. I will start sneezing violently, approx. 20 sneezes in such rapid fire that I can’t breathe. My throat gets scratchy, my eyes will water and get puffy and inflamed. My nose will be congested. Haven’t been able to find a particular food that triggers it. All of my allergy tests came back negative.
-Also, since my EGD/dilation, I feel worse. My reflux is constant. I hate eating because everything upsets my stomach and it gurgles for quite a while after I eat and I feel nauseous. Doesn’t matter what the food is.

I have my follow up appointment next week with GI. I’m worried that with the biopsy being negative, I will get the usual “don’t know what it is, probably nothing” dismissal. What questions can I ask the doctor, or what tests can i ask for to try to figure this out? Does this sound like EoE? If not any direction you might be able to point me in to bring up with the doctor? Is the EGD impression enough? TIA

In many posts I see folks just telling people to suck it up and do the work. That's not how we support each other. Do better!!!! Lift each other up as this condition is different for each individual.

I feel like I keep getting shuttled around doctor specialties, and I’m not sure if I’m seeing the proper ones.

Initially I saw a GI, had counts around 50-100, which didn’t seem to respond to medication. He said I should move to a nutritionist or allergist. I moved out of state and then saw a different doctor who said I need to see a rheumatologist (due to some other tests I had).

I feel like a hot potato!

Should I be using a GI doctor as my base of operations, and venturing to different specialties from there? Am I just not finding the right GI specialist?

I discovered my EoE in January, went on omeprazole 40 mg twice a day and had a follow up endoscopy about 2 months later-there was virtually no change in the eosinophil count. Now I’ve been recommended to remove wheat from my diet, which I’ve been doing for about four weeks. My doctor thought wheat was a good place to start because that’s the trigger food I eat most.
Now I met with an allergist who thinks the elimination diet is too complicated/unlikely to bring results. He also says cows milk is the most common trigger, which this other doctor didn’t mention. He argues that I should just go on the dupixent.

So I’m wondering- is it worth it to commit to an elimination diet to figure out my triggers or does it make sense to just go on the dupixent? I’m not super excited about having to eliminate dairy/gluten of course but I’m also not thrilled about being on a medication for the rest of my life (I’m 22). Any thoughts or experiences with either dupixent or elimination diets please share, much appreciated

Has anyone actually gained weight when they stopped eating their triggers? I can’t keep weight on at all and am really hoping to be able to gain. I’m thinking since my body was attacking my trigger foods that maybe my body never absorbed the nutrition I was taking ?

Anyone have any suggestions outside of the usual to help calm a flare down?

Has anyone experienced this? Insurance denied dupixent for my child who meets all of their prior authorization requirements (step therapy, etc) saying that it is "secondary" due to food allergies. His doctor has never seen this reason for a denial. Before appealing, I am wondering if anyone has ever seen a denial for this reason and if so, what the outcome ended up being.

Dx when I was ~12 after extreme vomiting/inability to keep food or liquids down, pain, constipation, and of course an endoscopy. I’m 23 now and I’m symptom free. My most recent scope in 2024 shows zero eosinophils and a healthy esophagus. My GI doctor was utterly shocked as neither she nor her colleagues had seen this before. I was wondering if anyone else has experienced this? Is it likely temporary? Will it come back worse? TIA

EDIT: 🚨

As a child I had asthma, it went away around the age of 8. I did attempt the food elimination diet after dx, though I was very young and didn’t follow them strictly. My GI’s best guess was that my trigger is milk. Before that I’d never had problems with milk or dairy. Since then (2015 or 2016) I started omeprazole for reflux. Initially, I stopped consuming whole milk/dairy then eventually started consuming dairy with lactaid leading to mild stomach upset. I consume dairy a few times a week with lactaid even to this day. Even though I continued consuming milk the amount of eosinophils decreased until there were eventually no more. GI is assuming the omeprazole somehow treated the EOE. I’d like to bring up that I developed severe environmental allergies in 2018, had an unexplain anaphylaxis in 2019, eczema started flaring again in ~2021 after not dealing with it since about 2007-2008. My allergies are out of control, I’ve developed severe sinusitis year round from my uncontrolled allergies. I can smell most of the time nor taste half of the time. I don’t respond to allergy meds anymore and will be starting allergy shots soon. I bring all these up because they’re connected to EOE. My guess is that the EOE (my bodies allergic response) just started presenting in different way. Sorry this response is very messy, currently at work lol. If you have anymore question please comment them, I’m more than willing to answer!

Never heard of EOE before January. 31 year old son had trouble swallowing. Went for endoscopy and had >50 eosinophils at the GE junction and a stricture requiring dilation at the same location. No eosinophils at other locations in the esophagus. He wanted to do 6FED, but doctor insisted he do PPI, so he did the 6FED diet AND took 40 mg Protonix per day. Second endoscopy and second dilation in March. Eosinophils at GE junction dropped to 6. Still no eosinophils in the rest of the esophagus. We don't know if it was diet or PPI. Doctor now agreed to test for triggers. My son introduced egg and dropped the PPI. (Still taking Pepcid twice a day to control rebound effect and help with any GERD.) Next endoscopy is Friday. We are so hopeful that the numbers do not jump up. Doctor thinks they will, and we won't know if it was the PPI or the egg. This whole process is just so difficult. My son has been doing 6FED since early January. He has not gone out to eat at all. Kind of living like a hermit, hoping to control this with diet and avoid drugs. If others have gone through similar process it would be nice to hear about it.