Hello all! I have recently been going to a GI doctor after 4 years of being told I just have acid reflux, my symptoms are: regurgitation, chest and throat tightness and weight loss of 40LB a few years ago that I’ve now been able to gain back. Omeprazole and pantoprazole both haven’t worked for me. the GI I went to thought these symptoms were odd to have and be played off as just GERD by my PCP. So he wanted a scope to rule out EOE. I feel these symptoms every single time I eat and every day. I had a upper scope done today and the doctor talked to my dad since I was sleeping still and (mind you its like a game of telephone at this point lol) told him he felt resistance putting the probe in which aligns with my symptom. But that it could be some anxiety?? Now idk how this comment was given or if I was a more little side note, but it’s upsetting me. I feel validated that he felt resistance bc I struggle with my symptoms not being validated by my family, but I just know in my heart of hearts it’s not anxiety. I personally don’t feel I have anxiety more then the average person, and too feel these “anxiety symptoms” every day after every meal is very odd to me. The biopsy results should come in a week, and I hope they confirm the EOE diagnosis just so I can have some validation in my struggles. He also mentioned to him possibly doing a swallow study. Sorry for the long rant, I’m just struggling with emotions right now and would like any advice!🫶🏻

https://www.youtube.com/live/FkSUMXSwcIk?si=qo92nIFC57IDWcu3

Hi,

I have been having insanely bad acid reflux issues for a while now, so much acid, I regurgitate a lot of things (including the antacid alginate suspension medication unfortunately) and oftentimes food feels like it gets stuck on the way down, amongst other troublesome symptoms. My GI consultant thinks that I may have EoE, and I'm having an endoscopy done in the next few weeks.

When I was 15, I had a colonoscopy to investigate a raised faecal calprotectin level which indicated IBD, and I got told they had found more than a usual number of eosinophils on the biopsy, and that I had eosinophilic colitis. I wasn't given any specific treatment other than being told to avoid milk products, which I did and still do, and the eosinophilic infiltration went away (funnily enough, my symptoms didn't actually get better and when I asked a year later if I could reintroduce milk, they shrugged and said "if you want to" - found out I made myself horribly lactose intolerant 😭) and there has been debate on whether or not the findings were clinically relevant.

I was wondering, out of interest, if anyone here has ever been diagnosed with a different type of eosinophilic GI disorder? I'm being kept awake by the reflux again and the question was on my mind :)

I am 99 percent got structure narrowing and my drs weeks yet. Eating anything is difficult but I’m still doing 3 a day. Feels tight in my throat goes through sternum ok, but under leftside nipple it seems tight again? Is the les there?

Describe the narrowing and strictures to me so I could get calmed I’m feeling alone

I woke up today with severe pain when I breath in it radiates down to my lower back and the pain is mainly on the ride side of my chest bone

It hurts to eat and swallow food and breath in it’s also in my stomach aswell

I don’t want to go in to the ER but idk what’s going on

I do have EOE but have never had this pain for this long before

I’ve taken two so far, the first was a 3 day interview style survey, it was about 6 hours of work in total, with a payment of $240. I got the check a few weeks after doing the survey.

I just did another one yesterday that was $60 for about 30 minutes of online questions. These two were specifically for EoE, but from my understanding, there is a range of conditions they have paid surveys for.

Edit: If you use my link I get a referral bonus, use it or not but either way sign up

Hi all, I have eoe, and on Saturday found out I have extremely low iron and ferritin (my pcp did blood tests). Who would treat this? My gastroenterology, my pcp, or someone else?

Is anyone getting a localized pains in the sternum off and on aching and sometimes burning? I heard it not possible for eoe?

I won’t go in detail of my symptoms history, but in short everything sounds like it could be EoE. It has been going on for 2 years now, and I also had some issues like that as a kid. I am a 21F from Italy who is losing her mind about it.

I just walked out of an appointment with a new GI feeling so helpless. He said that since I am too young, there is no need to take biopsies of my esophagus. He said that he KNOWS it isn’t EoE (is he… God himself?) and that I should go to a psychiatrist and get some kind of drug for anxiety. I really don’t get how I am too young to have an upper endoscopy done to rule out a possible cause, but I am young enough to get heavily medicated with antidepressant.

There are so many things I could point out of these 2 years trying to find a diagnosis, but right now I am at a loss of words. I have an amazing boyfriend who has supported me trough all of this, a good career in nursing, and a whole lot of plans for the future. Why on the earth should I take antidepressants? At least I want to know if it isn’t EoE. Why is it so hard for them to study my case a bit more and THEN eventually talk about anxiety meds?

I (37m) got diagnosed in august after the onset of my symptoms in June this year. I'm still in the proces of figuring it out. I'm on Jorveza since 8 weeks and it's defenitely helping. But I still get flares (but less in frequency not in intensity) including gradually increasing tightening of the throath, evolving in esophaegal spasms and the inibality to swallow saliva. Those flares always happen late in the day or during the nighttime.

This night unfortunately I had a flare again. Woke up around midnight shoking in my own saliva and mucus and was awake for hours because of the pain. I fell asleep a couple of times, only to wake up shoking again.

What always seems to cause this flare ups are long running sessions. It was like this from the beginning. Every time -without exception- after I did a long race or training I get a painfull flare 24 to 72 hours after the activity. This time I did a long run on Sunday, got a flare on tuesday. It can't be a coincidence anymore. It was my first long run in weeks, and the first flare also.

It puzzels me... I'm wondering: is it the physical strain itself or maybe something else? It got me thinking: what do my long runs have in common? There's this sportsgel I'm only using during runs with a certain lenghts.

They're full of maltodextrin. Does anyone have this as a rood trigger?

I have been diagnosed with EOE and have been on Dupixient for about 6 weeks but still having symptoms along with nose being completely blocked. I am also starting to wonder if I also have achalasia? Does anyone know the main differences between EOE and achalasia and if symptoms overlap?

Hi everyone! I (F45) have just been diagnosed with EoE after a routine scope to control my Barrett’s oesophagus.

I’ve suffered from silent reflux for ages without being aware of it and it culminated two years ago when I couldn’t eat anything at all due to major pain in my stomach. They ran all kinds of tests and I was diagnosed with Barrett’s. Put on 40mg Pantoprazole for life and have a endoscopy to check me every year (for the first three years)

I’ve had my third endoscopy this fall, and just got the results back: EoE.

Problem is that I still don’t have any symptoms. Never had dysphagia, never heartburn, never pain (other than around the time I was diagnosed and it rapidly went away with PPI’s) I’m also not allergic to anything known to me.

Doc told me to continue with PPI’s and start Jorveza if I don’t get better. But since I have no symptoms, how do I know when to start? And how can I try eliminating foods when nothing is triggering me?

Just very confused now, thanks for reading!

Recent endoscopy showed no eosinophils so Eholia is working..I still cough all the time. Anyone else have this situation? My Pulmanologist says my Asthma is not the problem..Gastroenterologist said it's caused by acid.

Hi all! I am new around here but I have been reading so much lately and I’m starting to feel confused and don’t know how to proceed. I (35f) started having problems swallowing about 2 years ago. It’s been a journey to get to this point but 4 doctors later, I finally had my EGD last week and my follow up yesterday. The biopsies confirmed EoE (>50/HPF). My GI doctor wants me to do omeprazole 20mg and see how I feel in 3 months. He said if that doesn’t work, we’d try a steroid and if that doesn’t work, we try Dupixent. I have read (here and other places) about trying to find your trigger with an allergist or a dietitian doing an elimination diet. Why did the GI doc not mention that? The thought of being on a PPI or steroid long term makes me nervous because of the side effects. Should I bring it up with the doc and/or seek care with an allergist or dietitian?

I am fairly sure dairy is the culprit for my EOE. It is very bad this morning and i had alot yesterday in various forms, including double cream (excuse the UK term!)

However it has to be said i have some form of dairy most days, in very small amounts, like a bit of butter or cheese for cooking, and most days my E0E is in check

So can some dairy be worse than others? Or the ‘strength’ of some dairy..i.e cream is alot more intense than skimmed milk

I also always thought with allergies if you were allergic to something that was it and it didn’t matter about quantity, but for me i seem to get away with small amounts

Any help?!

I originally wanted Dupixent but they wanted to do everything thing else before I get put on dupixent. They wanted me to get Flovent/fluticasone. My insurance is terrible and it would have cost $2200 for that medication. Is it really that expensive? So looks like I’m skipping that one. (I’ve taken it in the past and it’s been “ok” when I had better insurance)

I haven’t chocked in a while but everything I’m doing is more of a precaution.

Going to get a scope next month just to see how my throat is doing. Should only be like $700.

Anyone have “esophageal mucosal changes suspicious for eosinophilic esophagitis” but biopsies were negative for eosinophils? If so, what did it end up being? I’m concerned my doctors and I are missing something.

Has anyone diagnosed with EOE by biopsy discovered, either through allergy testing methods or through elimination diets and observation of your symptoms, that foods in the latex family (individually or when eaten in combination in small amounts over a period of time) are a trigger for EOE and/or produce FIRE (food-induced immediate response of the esophagus)? If so, have you also had a reaction to the oxygen cannula at any endoscopies?

I (23M) was officially diagnosed about 4 months ago with a 40 count of eosinophlis in my upper ephophagus and my ephophagus is ringed. I have almost fully recovered and just wanted to share my story and how Ive managed this disease likey my entire life. I suspect I had it all my life but because I was a picky eater and knew the feeling I'd get when I ate a trigger (almost a burning sensation) and constant salvation/needing to spit with nausea, I always avoided those foods for the most part and thought nothing of it. It wasn't till the beginning of this year when I went through the hardest semester of grad school and I had multiple painful impactions that resolved themselves that problems arose. After that I went almost 2 weeks barley eating anything scared and confused why food always got stuck in my throat also causing me to spiral into a depression and lost 20lbs. My Mother a nurse practitioner prescribed me short term steroids that helped me for a week so I could eat a little before my scope. My first scope however came back negative with only 5 eosinophlis (because of the systematic steroid I took to help me short term). The doctor however suspected eoe still due to my rings and symptoms so I went on Pantroprazal 40mg twice a day. The ppi didn't help me much and only made the little reflux I had worse. What really helped me was fixing my poor college kid diet of coffee, chocolate, and other acid inducing foods down. Anyways I eventually got scoped again 3 months later with some improvements and now not on any steroids I got my official diagnosis. At that point I switched PPIs to Omeprazole 20mg twice a day and weened myself off as I had bad side effects from trying multiple ppis that never even helped me. Also Tums for some reason always gave me shortness of breathe and is probably a trigger for me somehow? During this entire time I did an elimination diet eating only beef chicken rice few vegetables and mustard which was literally my only safe foods it seemed as my triggers seem to be nuts fish dairy wheat legumes peas many fruits polen honey corn stevia/artificial sweetners and processed oils. This helped a ton but it wasn't till I tried antihistamines that I could eat almost anything I wanted with little to no symptoms. Specially I've been taking childrens liquid benadryl with food I know is a trigger and also take a pill and my symptoms just disappear. I know this isn't good longterm though and more a bandaid but I switched to a new gen antihistamine (zyrtec) daily and since then I've gained back 20 lbs and am practically my normal self again. I also read on this reddit that the SLS chemical may cause EOE and my toothpaste/handsoaps did have it so I now also use literally just baking soda mixed with water to make it a paste and use that and yes it still works just as good. For soap I just use alcohol/hand sanitizer and Dr. Sasquach as it doesn't have any SLS in it. I also have the ability to try dupixent but because antihistamines are working for me, "if it ain't broke don't fix it" I'm putting that on hold. Hopefully this may work for some of you or may not as everyone is different but just wanted to share my ongoing recovery. I think the biggest cause of this disease is stress, dry environments (lived in Colorado entire life and no one else in family has this) and eating triggers. So find your triggers, cut out SLS, manage your stress, drink lots of water and you can do it! Also someone posted about saunas helping them too and I think that has helped some too.

My doctor wants me to avoid eating a bunch of foods to help manage my EOE symptoms which have been really challenging lately. Included are melons, peanut, potato, tomato, chard/spinach, citrus, wheat, peach, bell pepper, garlic/onion, carrot/celery, fennel, cauliflower, cabbage, and broccoli. I've been a vegetarian for 35 years and this list makes up basically most of my diet and includes a lot of my favorite foods. I have no idea what to eat. Any and all suggestions welcome!!

In the past year, I have been experiencing acid reflux and regurgitation that has increased in frequency— like at the beginning of the year I noticed it every so often and now it happens several times a day. I’ve had discomfort swallowing and have taken small bites and chewed very thoroughly for over 6 or 7 years now but always thought it was just a sensory issue/related to disordered eating which I struggled with for a while. However in light of these new symptoms, my physician and I both think it might be eoe. I’m moving in December, so I’m wondering whether to go to a GI now in a city I won’t be living in much longer (but that does have a lot of good resources and specialists) just to try and get an endoscopy and diagnosis asap or if I should wait until I move to do so and start building up a relationship with a GI who I could see in the long term. Since I now recognize I’ve had symptoms for years, a few weeks probably won’t make a difference and I don’t need to be in a super rush, but I’m also just really anxious about this possibility and really want to know for sure what’s going on. I guess my question is does it make more sense to wait or is it always better to pursue diagnosis asap? Additionally, has anyone been diagnosed by one GI and then switched to another right after? Any other tips or advice for someone waiting for diagnosis? Thank you :)

Has anyone else discovered IPAs to be a trigger? Ive had EOE for about 15 years but new to this subreddit I havent discovered a specific food that really triggers me except for an occasional IPA. Other beer do not bother me.

I find this annoying since beers dont list ingredients so its hard to narrow down which ingredient in the IPA is doing it. Its also not all IPAs but I avoid them all now anyway.

Ive had the scratch test done and had a high reaction to almonds but havent had an issue eating them.

Hi sorry to bother you guys. But when ppl say they are “in remission” or “a medication changed their life”. Could u expand please. Basically, I’ve had EOE for as long as I can remember so I’m a really slow eater to try and chew things a million times to prevent things getting stuck. At one point in my life food would get stuck for hours from 80% of meals I’d eat (you can imagine how exhausting that is). When your on these medications, can you eat like a genuinely normal person. Or do you still have little food habits and/or eat slowly and have to chew loads to be careful nothing gets stuck? I just can’t imagine a life where you can eat something so quickly and not even have to think about the food before swallowing it. Something so simple to humans yet sounds like such a luxury haha.

I recently moved from the U.S. to Europe in the past year.

In the US, I used to take a budesonide and honey slurry of 2mg twice per day (4mg total). I had tried taking 1mg twice per day on the slurry instead and I found that I still had symptoms. Because of this, once I moved, I asked my gastro to prescribe me 4mg of Jorveza per day. Does anyone take this much Jorveza per day? Everywhere I look online I see that it is either prescribed for 2mg per day or 1mg per day. Is it somehow dangerous to take 4mg of Jorveza per day vs. other forms of budesonide like Eohilia or the slurry using honey and the asthma version of the medication?

I just started dating this girl with this condition, hers is pretty severe, she had a GI tube for 16 years cuz she was allergic to just about everything and couldnt get the right nutrients. She has anaphylactic reactions to milk, gluten, eggs, nuts, and less severe but still allergic reactions to some other things. Basically all she can eat is rice, beans, poultry, and potatoes, and most fruits and veggies. She also has vocal cord dysfunction and some breathing problems that may or may not be related. Are there any tips for dating someone with this condition? Things to look out for, and how can i support her when she’s having flares, i dont even know how to use an epipen. I care for her a lot and want to do what i can to support her.

Hello, I'm 32F and am known with a history of asthma, eczema and seasonal allergies in spring. Since this summer all of a sudden I developed swallowing issues; mostly the feeling that foods or drinks won't go down easily and keeps "hanging" under my throat after swallowing. For food I have to take sips of water to get it down. I noticed that cold drinks are harder to swallow than hot drinks, I don't know why this is. After every sip of a drink I need to swallow 2-3 times extra otherwise it won't go down. Went to the GP, he thought it was reflux, got on pantoprazole for 2 weeks 20mg daily. This didn't change my symptoms so I went back. He referred me for a scope, which was last week. In the meantine I found out about EoE through internet and started thinking this might be my diagnosis. However I heard this week that my scope looked visually normal. They did take biopsies. I will get the results next week on Friday. My question;

• Is it possible to have a normal looking eusophagus and still have EoE?
• Could my symptoms indeed match EoE?

Thanks in advance!

I just got prescribed 25mg of Pristiq and was told to take it when I wake up, that is also when I take my first dose of budesonide. Online it says no interaction and my doctor did not say anything about it but wanted to check here as I start it tomorrow.

2024 has been hell.

January third went out to lunch with my mom. Got a rice and quinoa bowl with blackened chicken avocado and avocado ranch. All things I have eaten thousands of times.

Throat got itchy and hard to swallow/breathe. Mom rushed me to an urgent care where I received epinephrine and steroids and was shipped to the hospital. Nurse there told me “it’s the Avocado, every time I’ve seen a surprise allergic reaction in an adult that’s the culprit”

Weird but ok.

Globus sensation began that day and has never left me since. In and out of various doctors and allergists it took me until July to find an Allergist who wanted to investigate this globus sensation for me. Did a good panel skin prick test and got some positives. Mustard, egg ,soy, peanuts, and avocados were the big takeaways. She followed this up with a blood test for soy, peanut and egg as they were available. Egg came back fine but soy and peanut came back as low positives (I’m pending an oral challenge with her)

She told me it looked like EOE as along with globus sensation I experience “episodes” where it feels JUST LIKE anaphylaxis except my ability to breath is never hampered but I FEEL like it’s closing and I’m dying. (I grew up VERY asthmatic so am very psychologically sensitive to any sensation related to breathing issues) These episodes come set in sometimes a few hours after dinner (even if it’s just chicken and rice) it doesn’t seem to correlate with anything.

She wanted me to go to a gastro for an endoscopy and biopsy. I did in sept and finally have results. Gastro diagnosed me with active EoE and prescribed me omeprazolle 40mg twice a day for 3 months pending another scope.

He asked me to step down and stop my famotadine usage (been taking it daily along with Claritin since march)

I have an allergist follow up next week and a PCP one as well.

I’m very lost and confused and this has all been very scary. It’s been a bit of a mental health crisis for me as I now refuse to eat food that I do not make so that I know EXACTLY what I ate and how much.

Any tips or advice? I was an otherwise healthy 27 year old when this started. I’m now 28 and scared of food. It’s hell.

i go gym a lot and need some caffeine but scared to try energy drinks

Hey everyone,

Scope/dilated with biopsy count of 65/hpf 18 months ago. In denial for 16 months. Started food diary/elimination 2 months ago. Based off skin prick test -- which I realize can be very unreliable -- stayed off onion, rice, peanut for 6 weeks.

2nd scope 2 weeks ago resulted in EG junction at 30/hpf and rest of of the esophagus at 15/hpf. EG Junction is the only area that's been dilated twice.

My question for all of you: could the improvement be random or result of food elimination?

Allergy test said I had markers for onion, wheat, peanut and rice. I've never had any visual or physiological signs of being allergic to any of these foods in the past. Is it possible to only be allergic from an EoE perspective?

If so, how long (minutes to days) does it take before you generally a notice an inflammation response when eating a trigger food? On the same note, if you stopped eating it, when does remission set in? I'm trying to navigate this food elimination on my own as I can't afford to go in for a scope each time I think my throat has improved -- those Dr. visits are expensive!

I'm 100% sure wheat was a false positive, and am now slowly reintroducing onion to see if I notice any throat problems after. We've been told this is a lifelong condition so I don't have any desire to get on a PPI which is the only solution my Dr. is offering. Trying to manage on a supplement/lifestyle adjustment instead.

Any insight is welcome. Thanks for the help!