r/EosinophilicE

Hello Everybody, I’m 27 years old and have officially been diagnosed with EOE. I’ve lived with it my entire life and just thought it was how things were. I understand everyone’s EOE may be different. For me, I’ve managed to get food caught in my esophagus twice. Once when I was 16, and another time just recently (27). Both times I’ve had to go to the hospital to get the piece of food dislodged out of my esophagus. I have a rough esophagus compared to a smooth one. All my life, steak, protein bars, and some proteins have irritated my throat and caused it to swell up. Luckily, it doesn’t swell up to the point where I can’t breath but there is a risk that food may get lodged in my throat and I would need medical assistance to get it unstuck. Although it’s not completely life threatening, it is really scary but I know that remaining calm and remaining in a controlled situation is important. I’m an open book, ask me any questions you may have or give me some advice for living with EOE.

Can you ever stop taking ppi’s? For context I stopped taking nexuim (40mg daily) ab 2 months ago. I am on dupixent (once a week). I don’t have really any acid reflux but do have trouble burping. Not sure if it’s acid related or just an issue with my esophagus functionality

I feel like all I ever read are the terrible things about dupixent. And I was definitely hesitant to start it. I'm three weeks into my once a week 300mg dose. So far, I haven't had any crazy side effects. I pretty much feel the same. I did get a bit of a sore throat a couple days after the very first dose. Maybe this was just a bit of a cold and a coincidence. I dont feel any better yet, but I dont feel worse either. The only weird thing I have noticed is a bad taste in my mouth immediately after injecting. Also, I should note that the injection was not nearly as bad as I had thought it would be after reading all the comments about how painful it is. My doctor did prescribe the syringe, and I let it get to room temp before injecting, and I go slow. Long story short, so far it's not bad at all and im hopeful for some relief from eoe symptoms in the future.

My gastroenterologist prescribed Omeprazole for the 3 months leading up to my next endoscopy/biopsy. If the Omeprazole puts me into EOE remission, then I’ll be on it long-term. I’ve heard it can cause bone issues, vitamin deficiencies, and other long-term issues. How do you cope with the prospect and side effects of being on a PPI long-term?

My insurance probably won’t cover other treatments unless the PPI fails. I also have apprehension about a steroid/inhalers because I already have early stage issues with my teeth (prone to cavities and have some gum recession/periodontitis). So I don’t know what to do. It seems like there’s no good option. Choking on food frequently is pretty rough; however, so I have to balance the risks and rewards of treatment. I look forward to hearing from y’all.

I'm asymptomatic so there's no way for me to tell if I'm having any reactions from an allergen or not. I know everyone is different but I have nothing else to go on, so I'm looking for general consensus.

Say your trigger is dairy, and something is made in a facility that processes dairy but the food itself doesn't, would that cause an issue?

I am 24, and I always felt I was grasping for air when I eat dry food / some type of food. I always have to have a water bottle beside me otherwise I always feel food stuck in the esophageal area causing me pain and trouble breathing.

I just became aware of a surgery so to speak, where it apparently fixes this problem permanentely, anyone with knowledge on this or had this treated using this technique?

A few days ago I ate a piece of watermelon before bed and it felt like it was stuck in the lower part of my throat. I couldn’t get it to go away, certain times it was more noticeable than others. Then I had more watermelon today and I noticed it really bad again. At first I thought it was actually getting stuck, now I’m thinking I might be allergic to it and it’s causing swelling. How long could that swelling realistically last if I cut out the watermelon?

I’m 52F ( almost 53) and just diagnosed at the end of May by my GI doctor after an endoscopy and biopsies. I’m already dealing with perimenopause stuff (uterine polyp surgery coming up this month), so I’m a bit stressed and overwhelmed.

Anyway, I see my GI doctor again later this month for another office visit and I finally have my first virtual Dietitian appointment this week (this was her first availability).

So far I’ve eliminated dairy since June 1 on my own. I told my doctor I don’t know what to eat if I try the 6 FeD diet, so he said to start with whatever’s easiest. My question is: when he does the next endoscopy and biopsies, if things look better and my eosinophils are lower, how will he know if it’s the PPI or if it’s the elimination of dairy that are the reason?

Please advocate for yourself if you have eoe. As eoe is rare and emerging, many gastro doctors dont understand the severity of it. I was having stomach issues since some years and went to a gastro by chance and he performed endoscopy and he correctly diagnosed me with eoe as mine had feline rings present. My biopsy/hpe came at 18/hpe. Told me it was a little mild and gave me ppis and asked to take them forever. I neglected the ppis as I didnt consider eoe serious and went on with my life eating all kinds of food.

Luckily came across this group, and understood the severity of the situation if eoe is left untreated. I dont want to be dependent on ppis unless absolutely necessary as they would weaken the bones over long term usage. So started 6fed, like I went all in, even eliminated different types of fruit families too like melons and pineapple as they caused itching in my throat before.

Fast forward 6 weeks, got scoped/biopsied again, and upper esophagus healed from the rings, and at the very lower, some new rings were forming (probably due to me eating all kinds of food before I started the diet), but the HPE came in at 0-1/HPE. The report now says chronic esophagitis. But am pretty happy with the progress. Planning on introducing each food group and getting scoped again. So please dont take this lightly, and try the 6fed if possible to find the culprit. Good luck to you all.

Anyone with wide open esophagus and horrible dysphagia? Did dupixent help and how long until it did?

I had a scope done in 2020 after some trouble swallowing. My eosinophil numbers on blood draws have always been high. I was diagnosed with EOE and Barrett's esophagus. Doctor didn't bother calling me the results and had a nurse do it. He prescribed me omeprazole and told me to come back in 3 years for a repeat and then retired. I moved states and never got another done.

Fast forward to today and did some reason I was looking up EOE and decided to pull up my biopsy results.

From what I've read, greater than 100 is pretty damn high. I don't know what I'm looking for other then generally being appalled. I sent message to my current pcp for a referral since the dysphagia is returning.

Esophagus (biopsy):

Eosinophilic esophagitis (EoE) with greater than 100 eosinophils per high-power field (HPF).

Gastroesophageal (GE) junction (biopsy):

Eosinophilic esophagitis with greater than 25 eosinophils per HPF.

Focal intestinal metaplasia.

No dysplasia identified (no precancerous changes).

Stomach (biopsy):

Eosinophilic gastritis.

No Helicobacter pylori (H. pylori) infection identified.

No intestinal metaplasia or dysplasia identified.

I'm just generally annoyed right now and needed to vent.

Hello, I started dupixent 12 weeks ago and was diagnosed with 80% ineffective esophageal motility a month later. I had an esophogram prior to dupixent which also showed dysmotility. This has been the worst week so far. While I haven't really noticed a huge improvement since starting dupixent I have noticed the random day to day chest pain outside of eating has subsided for the most part but my motility just feels like its getting worse and worse with each passing day. Starting last week i feel like I can no longer burp to relieve the pressure when eating and my esophagus just feels exhausted even drinking liquids now. I was able to eat some pureed foods and soups and suddenly those feel really difficult.

Did anyone feel like they went downhill while on dupixent and then suddenly turned a corner and started getting better?

just yesterday after doing a clear liquid "fast" bascially lol of nothing but broth and juice and water for 6 days was blessed with some kate farms all in ones which i was begging for and i am super relieved i dont need to worry about food till i get healing but man last night was a doosey taking it for the first time haha. has anyone ever had the kate farms? they have me on the 1.4 for 8 days until my 30 day order comes in then the 1.5 peptide going forward until i can push past.

I’ve been on dupixent for 6 weekly injections and I’m noticing this past month or so I’m having headaches and worsening dizziness and brain fog. I’ve had what my dr believes are vestibular migraines before ever starting dupixent but it’s definitely getting worse recently since starting it. has anyone had side effects like this? I’m at such a loss because I can tell it’s healing my EoE and Dupixent was my last resort after years of trying to fix it. but what do I do now 😭

Where do I start? Milk & protein intolerance as a baby, crazy amount of spit up. Was on meds for acid reflux. Appeared to grow out of it around age of 1. Fast forward to well child visit age 4, dipped off growth chart, constipation, meal time taking forever— ran blood labs, nothing alarming. Negative for celiac. Started throwing up if she’d laugh too hard or over extend herself. Year 4-5 was up & down with nothing obvious but now putting it all together: consistent complaints of tummy pain, eating slow, suddenly not eating much meat, coughing a lot after diary, a few episodes of likely something stuck in her throat, worse constipation with too much carbs, to only eating a few bites & being “full”. We finally landed at a EOE diagnosis confirmed by endoscopy and biopsy (with over 100 eosinophils).

Now the road of what’s the culprit, how to treat, etc. starts.

Any dos, don’t, general advice for an overwhelmed mom? We will obviously be working with her DR care team too but value other experiences too.

Random but it also seems to be relevant from what I’ve read (immune system in general doesn’t handle typical allergens well), she has pretty bad seasonal allergies, has eczema, and reacts to bug bites like crazy, spot swells 3-5x, hurts, scars, etc.

Thanks in advance!

Just wondering if anyone knows if there's a known link between blood clots and EOE?

Anyone else with EOE have a history of blood clots that didn't have an identifiable cause?

About two years ago, I went to the ER for tachycardia that wouldn't stop, and found out I was pretty riddled with blood clots (multiple bilateral pulmonary embolisms and a bunch of DVTs in one leg).

Despite testing, no cause was identified.

Fast forward to now, when I've just been diagnosed with fairly clinically advanced EOE with very high eosinophils, after worsening impaction and reflux.

I have read that Hypereosinophilia can cause blood clotting. EOE is not Hypereosinophilia (and tmk blood draw WBC levels will usually be normal with EOE) but there are obviously excessive localized eosinophils in the esophagus.

I guess I'm just wondering if I have found the cause of my clotting event, and am asking myself if I am now higher risk for reoccurrence 🤔

37/F, US, 5'7", 160 lbs, nonsmoker, no major medical issues other than environmental allergies

Meds: Tirzepatide, 40mg Omeprazole (started today)

Yesterday I choked on a piece of food. Could breathe, but it was very stuck down there and I couldn't swallow anything (even saliva) without vomiting it back up. Ended up in the ER, was admitted to GI and was given an endoscopy to push the chunk of food down which was stuck in the lower 1/3 of my esophagus.

I recovered well from the procedure and am home now. They said I most likely have EOE (Eosinophilic Esophagitis) but won't know for sure until biopsy is done and I will have follow up with a GI doctor in a few weeks.

They said I can resume normal eating, drinking, life, etc, but they didn't say anything about the Tirzepatide and I was too tired to think about asking. Is it safe to take today? I’m due for my next dose. Thanks so much in advance for any advice you can give. 🙏🏼

When you reach 30 mins after taking medication and it’s time to rinse, do you gargle water? I rinsed like 3 times after taking my very first dose tonight because I am worried about the oral thrush side effects.

I've been burping a lot. A biopsy found a good deal of eosinophils. Before committing to three months of PPIs, I wanted to try 6 weeks of SFED.

It's just been two weeks, but I've been really proud of my meal planning and persistence. I've had support from my partner who joined in solidarity. We got this far and felt, "Great, we can just repeat all of those dietary choices three more times and we'll basically be done."

But the both of us have had terrible and consistent heartburn in the last few days. Without intending to, it seems like we've ended up eating a lot of acidic foods: berries, citrus, tomatoes, vinegar. Probably because they're the tastiest food available to us. My only previous experience with acid reflux was first taking an SSRI; the early phases really upset my stomach, but it eventually evened out. I've never had this much heartburn purely from my diet.

My brother-in-law has GERD, and I asked what foods could help. Low-fat dairy, whole wheat, lean fish... a lot of stuff restricted by my diet. And I realized what I used to do the few times I did have heartburn was eat a piece of bread to feel better.

Right now, I have trouble imagining feeling better at the end of this. Any similar experiences? It seems to me this diet skews naturally toward acidic foods, but maybe I'm making a categorical error.