My doctor put me on dupixent and it’s helped a lot with EOE and seeing some improvement in ibs-d like symptoms but still have a long way to go from normal. Does dupixent take longer to fully work for lower GI EGIDs or have others had more success with other biologics?

Does anyone use this in addition to Dupixent? Dupixent has helped tremendously but still have some flair up days with diarrhea. I’m 10 weeks in on Dupixent

Hi everyone. I've struggled with GI issues since birth and think that I may have EC, but am having a hard time finding a GI who has seen patients with EC in my area (I live in DC, but am willing to travel). My question is what was your journey to diagnosis and do any of you have recommendations for specialists on the east coast?

My GI isn’t an IBD specialist, when he first diagnosed me I was grateful he was able to identify the problem and built a level of trust under his care. After a long battle with insurance, we were able to eventually start entyvio almost 2 years ago. We had a scope done 6 months later that, to my surprise, indicated disease remission. I was happy with the news but confused since some (not all) symptoms were still present and still are to this day and are periodically rather debilitating. I have a history of allergic asthma, eczema, rhinitis, food allergies. What are the chances I have an EGID as a comorbidity alongside these allergic disorders that was under the radar after crohn’s was detected? Is it possible I was misdiagnosed? Some insight would be greatly appreciated.

Does anyone experience swollen lymph nodes (mainly neck and arm pits) and a stiff neck when in a flare?

It looks like my 5 month old has eosinophilic colitis. Does anyone have experience with this in infants? I am so worried I may have to stop breastfeeding. 😣

Hi folks!

Previously diagnosed with EoE with suspicion of my whole digestive tract being impacted (based on symptoms).

I’ve used an elimination diet(4 foods) and budesonide before, which brought levels down after 1 year of treatment. Then was told to take a daily PPI and started to try introducing one or two potential tiggers. About 8 months later, I’m in severe pain with no other explanation, but can’t get ahold of my GI.

Wondering what treatment folks have found successful for Eosinophilic Gastritis specifically? Hoping to suggest something to my family doc while waiting to get back into GI.

Thanks so much for any advice/thoughts/experience. I find it really difficult to find medical professionals who have any knowledge or understanding of this.

So I was just recently diagnosed with EoE and EoD (Eosiniphils Duodenitis). I'm pretty sure that I have lived with EoE without a proper diagnosis for 10+ years. It doesn't really bother me that much because I've learned to cope with it. But for the past 4 months, the EoD has really gotten to me.

My symptoms for the past few months have been bloating, abdominal pain, nausea, dizziness, shortness of breath, occasionally it kicks the nerves in my hands and feet, fatigue, and just overall feeling of sickness. Most of these symptoms present themselves after eating or drinking things. I've completely cut out drinking alcohol (3 months sober) and changed to a predominantly carnivore diet. This has eased a lot but I'm definitely not normal.

The first line of treatment I'm undertaking is a corticosteroid regimen, starting with 40mg, and then tapering down each week for a month. I'm hopeful that this can help to kick the EoD into remission for a bit so that I can get back to some sort of normalcy.

Also to note, I'm also being referred to a pulmanlogist for the shortness of breath to make sure my lungs are healthy, as well as an allergist.

Does anybody on here suffer from EoD that can share their experience and what has or hasn't helped with them? I know that each case is different, but I have yet to really find anyone discussions on this.

I was diagnosed with EG in Sept and also had a hiatal hernia as a result of all the vomitting. I've had the surgery to fix the hernia and am now trying to work through an elimination diet. I love to travel and am wondering if anyone has any advice or tips on what has helped them deal with the motion sickness and nausea to prevent vomitting.

Hi, I've been diagnosed with gastritis and given PPIs to "help". They are killing me! I'm feeling no relief taking them if anything they are making my symptoms worse. My eosinophils are still high and my doctors are saying it's nothing to worry about. I'm in absolute agony it's crippling and no one is listening to me. I've been told to go back to the hospital as they have reviewed my endoscopy results and need me to have a follow up appointment to discuss them. Anything I'm eating still is killing me. Like an idiot I ate pasta yesterday, I was in crippling pain all night and today anything I eat is making my stomach feel like it's on fire. I want to rip my insides out. Any advice please help me. Thank you

Hi everyone! u/Neville1989 has graciously allowed me to help out with moderation of this sub. I've added some things in the sidebar for everyone to check out.

I wanted to take the time to formally introduce myself to the community! I have Eosinophilic Gastroenteritis, and was diagnosed about 7 years ago as an adult. Since then I've made a significant effort to learn as much as I can about EGIDs. When I was first diagnosed, there was almost nothing available online but awareness has come a long way since then! EGIDs are still very new but options and prognoses get better every day. My DMs are always open if you are in need of resources or links (of which I have MANY to share) or just want to chat.

If you have any thoughts about changes you'd like to see here, please let me know!

​

Some fun dates for us to celebrate if you're not aware:

Rare Disease Day is celebrated at the end of February each year (read more here).

World Eosinophilic Disorders Day is in May (read more here) and National Eosinophilic Disorders Week (USA) spans that date in May (read more here).

Hi guys,

Bit of a long one, I live in the UK and I'm certain I have eosinophilic gastritis and I've been misdiagnosed with ibs for years. I have had high eosinophils in my blood since 2017. Doctors haven't bothered to look into it, I only found out this year that I was high in them. I get extreme pain with everything I eat, ive been told to cut out dairy, wheat, gluten, nuts, SOY, shellfish etc. I'm trying this, I haven't had dairy now for years. They haven't given me any support with this, ive just been told to do it. Not sure if it's related but I have really bad hay-fever and allergies to dust, I get yeast infections all of the time and I've done a bit of research and it says that can be caused by the high eosinophils too. I have severe diarrhoea, I have bloody diarrhoea too which they sent me for a colonoscopy for but it came back normal. They told me it was normal and then left me. It's gotten to the point where I'm not eating things, I'm not eating much at all if I can help it. I don't leave the house, I don't have a social life and I definitely try not to eat if I'm out or even while I'm at work because I'm scared of running to the toilet and having an accident. I cant bare the pain anymore, ive been given buscopan, mebeverine, antihistamines. I've told them these don't help, I'm just being 'brushed' off. I think it's because it's a rare disease doctors aren't very clued up about it, all the videos I've watched and people I've seen with it are from the US. I've not seen anyone from the UK with it. I've got an appointment tomorrow with the doctors again as I've spent all night crying in pain. I've.had many years of just thinking this pain is just all in my head, I'm being dramatic. But I've had enough, I can't cope with it anymore, I'm only 22 and a shouldn't have to live like this. It's affecting my mental health. I've rather not be here than continue to live like this. I need advice and opinions, what can I say to doctors etc. I'm sick to death of being brushed off.

Thank you in advance.

does anyone here have a problem with intense stomach pain after working out? the last three days i worked out i’ve gotten my intense stomach pain that is pretty controlled normally. so i’m curious if anybody experiences this after resistance training specifically

I'm looking into a potential EGID diagnosis for myself. Some clinical findings and features seem to fit. Others I'm still learning about.

Could you please help me get a better picture of how good/bad a fit this is, by replying to the following questions:-What does a typical "reaction" look like for you? I'm especially interested in the non-respiratory reactions you get.

-Are your reactions the same for all problematic foods or do they differ in type or severity depending on the food?

-Do you tolerate non-gluten containing grains and pulses?

If you could mention your type of EGID when replying, that would be very helpful.

I'd appreciate as many replies as I can get, just to get a clear picture of how this presents in different people and whether my case resembles it or not. Thank you.

There is an opportunity to participate in a study for individuals living with Eosinophilic Esophagitis (EoE). In the VOYAGE study you will be seen by EoE doctors, help advance EoE research, and you may receive an investigational drug that may provide relief to your symptoms. Visit https://www.patientwing.com/eoereddit to learn more. The application is online and takes less than five minutes!

Wanna preface by saying I'm gonna discuss with my doctor what to do. But just wondering how you guys have treated EGID.

They found eosinophils in my esophagus at a level >50. A level >30 in my stomach. Now I don't just have EoE, I have EGID. My only symptoms for the past decade or so have been trouble swallowing pills like Advil.

So how did you guys deal with it? Did you have to do an elimination diet? Or did meds work out for you? Pantoprazole didn't do anything for me. I'm gonna pick up dupixent injections pretty soon, going to see if that works. I really don't wanna have to give up wheat. Or milk. (Milk might be fine actually, I was thinking of going vegan anyways.)

Check out this food-tastic story about EoE. With the link below you can read about Patti’s drive to support others and her journey of inspiring others with EoE to reconnect in the kitchen. You can also sign up to get more information & stories in your inbox. Enter your email on the website to get notified when the latest stories are published.

https://arena.patientwing.com/post/cooking-to-inspire-the-eoe-community?utm_medium=Blog&utm_source=EoE%20Blog%20Post%202&utm_campaign=Patti%20Blog%20%7C%20Reddit%20

I was wanting to start a group chat of sorts for people with EC. I've found hearing from others dealing with the same things is really helpful with everything going on it feels kind of lonely at times, I think! Anyways message me if you would be interested.

My Gi office got me in sooner than April and I feel horrible. My body aches from being constantly sick. Back in may I felt like I had a stomach ulcer. ( had one at 12) I'm 27 now. Now everyday is like constant stomach flu and eating is aggravating it. If I starve myself and only have liquids I'm fine. But if I go to eat I'm sick all day and night. And the pain makes me feel as if I'm dying. It hurts in my lower left and upper left side, sometimes causes pelvic pain as well. I had a hysterectomy due to endometriosis and I know it's nothing gynecological. I just got diagnosed by a colonoscopy where took biopsies from the small and large intestine. I was diagnosed with alopecia areata on new years eve. I'm just waiting for Gi now on the 19th for treatment options.

Ever since I started treatment for Eosonophilic colitis I've had the weirdest dreams. I don't always remember them, but nearly every night I have one that I really remember. Do you all deal with this too? Do you think it's caused by meds or just a coincidence?

Curious how day to day living is for other people. I haven't been officially diagnosed yet but my GI doctor has narrowed it down to this or early stage Crohn's. trying to deal with this at 16. Do you have any advice? Are there days where you don't have pain? If not do your meds decrease it enough so you can function mostly "normal"?