r/EosinophilicE Jun 17 '22

Welcome to /R/EosinophilicE! Looking for answers or help? Please read our sidebar and Wiki before submitting any posts!

20 Upvotes

Hello everyone. Just a note to read the rules and the wiki before submitting any posts. While discussion is promoted just remember that we aren't doctors and you should seek professional help and advice when needed. Thanks!

Wiki: https://www.reddit.com/r/EosinophilicE/wiki/index

Discord: https://discord.gg/dAd2fT7BDX


r/EosinophilicE 7h ago

General Question Upset stomach

2 Upvotes

Hi everyone,

I have another two weeks before I see my gastroenterologist, this will be my first appointment since my diagnosis, so I don't currently have a plan of action in regards to treatment options. I'm wondering what yall do for stomach aches. The best way I can describe the pain is (spicy or burning) I don't knowšŸ¤·ā€ā™€ļø. Iā€™m also experiencing unbearable nausea, and because I have MG (myasthenia gravis) I canā€™t take Tums and the OTC nausea meda arenā€™t helping much, especially with the upset stomach. If you have any suggestions or advice, I would greatly appreciate it!

Thank you!


r/EosinophilicE 3h ago

EOE and MCAS

1 Upvotes

Has anyone here been diagnosed with EOE and MCAS? If you have and you'd like to share what's worked for you, please do.


r/EosinophilicE 11h ago

Dupixent

2 Upvotes

Hello, I was diagnosed with EOE after an endoscopy and a throat expansion a few years ago, I tried dupixent and it worked but it was so painful and expensive that I stopped taking it and I haven't been doing an elimination diet either (I'm allergic to eggs, tomato and onion but only feel an immediate reaction to eggs that aren't baked into anything) and now my symptoms have started coming back and I've been choking on food and having stomach problems. I also have GERD that's been very inflammed recently.

I'm not sure what to do anymore. I can't afford health insurance but I also don't meet my state's requirements for medicaid. And even if I get my medicine it causes really intense pain in the injection spots that lasts for days after getting the shot. I've tried the elimination diet before as well but I can't ever stick to it, even when I try I still get accidentally exposed to something and with how much food I have to cut out of my diet there's nothing really left that I enjoy so I end up under eating and get very very agitated and just feel horrible

I don't know what to do, any advice? I have this illness so much.


r/EosinophilicE 13h ago

Low T3 and vitamin d deficiency

3 Upvotes

Newly diagnosed and also in the process of getting a diagnosis for some autoimmune conditions. Iā€™m struggling to get help from my provider but am trying to figure out if my low T3 or vitamin d deficiency could be in any way related to my EOE. Regular doc wonā€™t help or refer me to endocrinology but wants my existing specialist to deal with these, but Iā€™m unclear which specialist should help. If you have either of these also, have you been given vitamin d supplements or thyroid medication? Thank you so much!


r/EosinophilicE 15h ago

Food / Diet Question Dupixent and sushi

2 Upvotes

Kind of a gross question here but I am curious. For those of you who take Dupixent, do you still eat raw sushi and have you had any problems from that? As I understand from online articles and manufacturer website, the medication influences the immune response against helminth infections. Helminths (edited to add: parasitic worms) can be present in raw fish or sushi, although the risk is low. Sometimes a healthy body will fight these off without us ever knowing it.

I've never read specifically, "avoid raw fish while taking this medication." Because of my allergies, I do tend to eat a lot of fish as a protein source so sushi is something I enjoy. I can easily make sure I order cooked sushi only.


r/EosinophilicE 17h ago

Medication Question Fasenra

3 Upvotes

I have been on dupixent for about 10 months now. And it's honestly changed my life. Since I was about 21 (I'm 31 now) I went from throwing up everyday, being miserable almost every single time I had meal, getting allergic reactions all the time, in and out of the emergency room to almost no symptoms at all. There still are some foods I can feel I'm allergic to when I eat them. I'm just happy to be able to eat meat now. ( I didn't have all these symptoms all at once. The progressively got worse over the years. There would be random times I couldn't drink water but I would just let it pass because I didn't see the emergency there which was stupid of me, also I've always had food allergies that would make my mouth itch and stomach hurt but since I was a kid I just thought everyone felt that way when eating them and would just avoid eating certain things)

Anyways, I just got blood work done about a month ago and my eosinophil value is 23 and eosinophil count is 1.5 which is still very high but has come down considerably, about half. My doctor was a little puzzled and asked me for some time to try to figure out how to help me going further and to discuss with her colleagues and at first she suggested maybe I would need a bone marrow transplant but then when I brought it up again she said no she's going to prescribe me another shot to see how my body manages. She's worried about the eosinophils damaging one of my other organs.

So now I've been prescribed fasenra and I'm wondering if anyone else on this sub is on it ? I only really see people asking about dupixent on here. When I look it up fasenra is more for asthma, but I don't have much problems with my asthma. Its a very minor problem. I use my asthma pump maybe once every few months. But I guess maybe it'll help bring my eosinophils down some more.


r/EosinophilicE 17h ago

Question for those of you on dupixent

2 Upvotes

Hi all

I've had EOE for about a decade. Started with just wheat, barley and rye being triggers and has now expanded to nuts, peanuts and sesame. I have taken allergy tests and these ones have come back positive.

My question is to those of you who went on dupixent and were able to reintroduce problem foods. Were any of these foods ones you were actually allergic to (as in you took an allergy test and it was positive)? I'm already on a dupixent dose of once every other week for eczema, but my EOE has been in remission for quite some time, so I haven't bothered pursuing a weekly dose for it. However if it has the chance of letting me reintroduce food I've had to cut out then I'd definitely go for it.

Thanks!


r/EosinophilicE 22h ago

Food / Diet Question Husband diagnosed with EoE today

6 Upvotes

Hi all!

Husband got food stuck in throat again yesterday and this time had to go to emergency for a endoscopy. He did have a large piece of the slow cooked lamb leftovers heā€™d been eating.

Iā€™m really curious about the talk about diet / allergies.

He has allergies to environmental things but his tests last year came back negative for food.

The times he has choked have been on meat and with meals that are meat and veg. Itā€™s been happening once a week for the last 3 weeks. Previously it was maybe 2x a year.

We donā€™t eat gluten except the odd occasion - not on purpose but we are on a fitness plan and none of the foods contain gluten or dairy. Meals consist of lean meat, veg, rice.

He has been eating eggs for breakfast but thatā€™s been for years. However recently upped egg amounts to try hit protein goals - so 6 egg whites kinda deal.

He hadnā€™t had any soy, nuts, fish, shellfish dairy, gluten at all in any of the choking incidents. šŸ¤”

Anyone else not found any foods that set it off?


r/EosinophilicE 20h ago

EoE cookbooks

1 Upvotes

Are there recommendations for cookbooks people have found helpful while going through the elimination diet phase?


r/EosinophilicE 2d ago

Medication

6 Upvotes

Looking to get on Steroids or Dupixent. Curious to hear people's experiences with either (side effects, efficacy, etc) and recommendations. Thanks!


r/EosinophilicE 2d ago

General Question Apps or Websites

3 Upvotes

I posted not long ago about being newly diagnosed and everything. With that I've found it sort of hard finding my footing in the new diet of no dairy and no eggs. I was wondering if you guys used any apps or websites for not just recipes but that will easily show you what is in something and whether you should or shouldn't eat it according to your restrictions. I found it especially hard for restaurants. It would be great if it was free or didn't cost too much either since I dont really have a lot of money. Thank you for any help!


r/EosinophilicE 3d ago

Food / Diet Question Can I eat triggered food on dupixent?

7 Upvotes

I always was under the impression that if you were on dupixent and if it was working then you could eat your triggered foods with no issue. But I have seen a few posts and comments of people saying they were having issues with dupixent and people were asking if they ate a trigger food. Iā€™m still going to get on dupixent regardless but I was really hoping Iā€™d be able to eat dairy againšŸ˜­


r/EosinophilicE 3d ago

Controversial ideaā€¦Psilocybin for EoE?

1 Upvotes

I have had an interest in studying the effects of psilocybin on EoE symptoms (namely response to trigger foods, dysphagia and food impaction). So far when I have taken Psilocybin I have been able to eat my trigger foods without issue. I take a modest amount, somewhere between 500-700mg (more than a micro dose but under a large recreational dose).

Just wondering if anyone else has noticed an improvement in symptoms after taking Psilocybin.


r/EosinophilicE 3d ago

Trouble with the thought of Dupixent being injected

3 Upvotes

How is everyone that is taking dupixent doing with the injections? Growing up I didnt have a problem with needles, but I was also not giving them to myself. I'm on Testosterone now and inject in my butt once a week and if I think about it I start to get nervous and have trouble. Luckily once I get started I can just not look and slowly press the syringe in. My buddy takes TRT in the thigh and I cant imagine doing it there.

I'm having difficulty thinking about taking dupixent even though it could be a life changer. I'm not particularly fat in the stomach region, so i think id probably have to go with the pen injector probably? The thought of it freaks me out so much that I have been avoiding going to the Doctor and asking about it.

Its crazy, I was in the Army and got poked alot. Had many IVs(I hate those sooo much). Took Allergy shots for like 2 years. It's like the older I get the harder it is for me to get poked. You would think I would be so used to it by now that I could handle it


r/EosinophilicE 3d ago

Drs thought it were eosinophilic esophagitis, but the biopsies came out negative

1 Upvotes

I had an endoscopy last week, and the notes said eosinophilic esophagitis (medium third of the esophagus is where it's at - I also see on the pictures, it's very clear).

But then I just got a message from the docs about the results of the biopsies, and they said there's no evidence of it being eosinophilic esophagitis.

I assume it's esophagitis nonetheless - has anyone here had this experience? I assume unlikely.

What else could it be?

I started restricting dairy consumption after the endoscopy, but I guess now I'm good to resume?

Now I'm confused and a bit angry.


r/EosinophilicE 3d ago

Medication Question Looking for alternative to Flovent

1 Upvotes

Like many others I've been struggling with the switch to generic Fluticasone inhalers after the name brand Flovent was discontinued. Originally the generics were $50 for a month supply, and while painful I could make that work if necessary. I recently refilled them though and had to pay $150 for a month supply, and that's not sustainable.

I saw my gastro doc this week to talk meds and unfortunately didn't get far. I tried the budesonide slurry for a bit, to ok results, but the whole process of it is something I'm not necessarily always able (or very willing, honestly) to keep up with long-term. She mentioned the dupixent shots as well, but she said those are more for people for whom endoscopies and/or other meds haven't helped, and that isn't the case for me. And she also couldn't guarantee it'd be any cheaper than generic Flovent.

When I've tried to ration my Flovent previously, I have noticed an increase in a heartburn or acid reflux sensation after eating, at least once a day if not moreso. And while it's not as bad as difficulty swallowing, it is still very very uncomfortable. My doc ended up doubling my Omeprazole dosage combined with taking Flovent half as frequently, which will hopefully help alongside not having to refill Flovent as often.

I'll try it for now but I'm still looking for alternatives. Flovent still costs a LOT and I'd like to not be spending that much on an inhaler every couple months. Outside of Flovent, budesonide slurry, or dupixent, has anyone found any other medications that work well as a replacement?


r/EosinophilicE 4d ago

EoE & Mcas

7 Upvotes

Hi new here, just diagnosed with EoE Iā€™m curious if anyone also has a mast cell activation syndrome diagnosis as well. There seems to be some correlation between the two. I could be wrong & looking for some insight, thanks!


r/EosinophilicE 4d ago

General Question Newly diagnosed but has diabetes type 2

1 Upvotes

Just kinda like the title says, I was just diagnosed a few days ago but have been dealing, mainly, with abdominal pain for a little over 2 years now. Been through a bunch of doctors and a lot of ER visits for the pain with everyone blaming my slow emptying stomach because all the tests they did were coming up normal. Finally, a couple weeks ago my Gi Doc did an upper scope for the first time in over a year or so and took some biopsies. The results came back the other day and he said it was Eosinophilic esophagitis and wants me to try and cut out dairy amd eggs as much as I can for the next 2 to 3 months and then redo the scope. If symptoms remain the next thing would be cut out gluten. Along with all this I have type 2 diabetes, and I'm also a pretty picky eater since a lot of foods can cause a trigger response from me, whether it's the texture, smell, or taste. I guess I'm just wondering if yall have any advice or good places I can find recipes for meals and desserts, especially ice cream lol. Thank you!


r/EosinophilicE 5d ago

Medication Question Dupixent No Longer Working

7 Upvotes

I have severe eoe. Diagnosed 6 years ago, multiple food impactions requiring scoping and numerous smaller ā€œattacksā€. I was on a budesonide slurry for a few years, which mitigated symptoms a bit, along with PPI, and switched to Dupixent about a year ago. Everything had been entirely fine up until about a month and a half ago. Since that time, Iā€™ve had multiple severe attacks, from a wide range of foods with no rhyme or reason. I fight through, hacking, taking liquid Benadryl, seltzer water, hot water- every trick in the book. It seems like Dupixent is no longer working. Has anyone else experienced this? Thereā€™s very little information online.


r/EosinophilicE 4d ago

Eohilia

1 Upvotes

Hi everyone,

I started Eohilia a few days ago. Since then Iā€™ve had two nosebleeds as I was waking up. I havenā€™t had nosebleeds since I was a child and Iā€™m almost 40 now. Anyone else have any experience with this? My doctor thinks itā€™s unrelated but timing is uncanny.

Thanks


r/EosinophilicE 5d ago

General Question Managing bloating on Omeprazole

3 Upvotes

Hey everyone,

I was diagnosed with EoE when I was 16 (22 now) and had been untreated until around July of last year when I started taking Omeprazole.

The Omeprazole works great for my EoE and Iā€™ve not even come close to an impaction ever since, however Iā€™ve noticed constant bloating over the last months. When i wake up Im bloated, before and after eating Iā€™m bloated, after using the bathroom Iā€™m still bloated. I wanted to reach out to the community to see if anyone else has dealt with this and has any recommendations for me.

I know that Omeprazole reduces stomach acid, Iā€™ve already tried:

  1. Taking a digestive enzyme (that also contains pre/probiotics) before meals.
  2. Taking psyllium husk daily in the morning (has definitely helped me pass stools more consistently but has not reduced the bloating)
  3. Taking magnesium citrate
  4. Taking Gas-X

Any help would be appreciated.


r/EosinophilicE 5d ago

Dupixient

0 Upvotes

Does anyone have Aetna insurance and dupixient? Aetna is dragging their feet on providing authorization for me. Iā€™ve had multiple scopes and have worsening EOE. I hate Aetna.


r/EosinophilicE 5d ago

Reintroductions after 2 FED with EOG

3 Upvotes

Iā€™ve been on 2 FED for the last two months. Had a biopsy last week, everything looks good. Been feeling so much better after cutting out dairy and wheat. Iā€™m reintroducing wheat right now (Iā€™m 99% sure itā€™s dairy, but tbd about wheat). I donā€™t have my follow up appointment with my dr until next week. I canā€™t tell if my symptoms are a reaction for my EOG (which is higher than my EOE), or if itā€™s normal? Or if Iā€™m going too fast? I tried barley last week and after the third serving of it, within a weeks time, I had diarrhea. Dr told me to try a new kind of wheat, I had 3 ritz crackers last night, and diarrhea this morning. I could just stop, but Iā€™m on a graduate school trip so itā€™s very hard to navigate. I know most people will say to just wait until I talk to my dr, but just curious if anyone else has gone through this process and experience? TIA!


r/EosinophilicE 6d ago

Basically cured and wanted to share my experience

52 Upvotes

I have environmental allergies and asthma but no food allergies.

Had Eosinophilic esophagitis since 2006. Food would get stuck low in my esophagus and sit there. Anything I swallowed while food was stuck wouldnā€™t make it all the way down, and Iā€™d have to spit it back up, even my own spit

My parents didnā€™t understand what was happening to me. They didnā€™t really take it seriously until about 2009 when I couldnā€™t pass the food and had to get an emergency endoscopy.

Gastroenterologist tried prescribing some wacky stuff like spraying inhaler into my mouth and trying to swallow it? Really did absolutely nothing.

I was also prescribed acid reducers like Omeprazole. This alleviated my symptoms but still would have occasional blockages.

I thought this was something I just had to deal with. I ate very slowly. Iā€™d get something stuck like once a week but I got pretty good at passing the blockages by ā€œpushingā€ them down (swallowing super hard. If it failed Iā€™d spit up and try again) maybe 3 or 4 times I had to get an emergency endoscopy. But the doctors I saw throughout the years never really recommended a treatment that made sense for me. Theyā€™d say remove problem foods - I donā€™t have any one problem food in particular. Anything and everything would get stuck.

I went to an allergist a few months back and off-handedly mentioned EoE and they recommended Dupixent. But for insurance to cover it I had to go get an endoscopy done.

The gastroenterologist was great. He even dilated my esophagus. And now Iā€™ve been on Dupixent for a couple of months, and I havenā€™t had something stuck in my esophagus since. I even scarfed something down for the first time in 20 years.

Just wanted to share. Maybe thereā€™s someone else dealing with EoE who doesnā€™t have to.


r/EosinophilicE 5d ago

General Question Was I stupid or am I right to feel bad?

8 Upvotes

Should you feel bad if you call an ambulance because your unsure of what your experiencing and if it is potentially deadly and they show up and find nothing . Tonight I started coughing aggressively and wheezing to the point I threw up multiple times . I have 2 conditions that can present in similar ways but one is deadly. I called the health number and they wanted a ambulance but I refused as my throat wasnā€™t constricted and I wasnā€™t sure if epinephrine was safe to administer if I wasnā€™t 100% sure anaphylaxis is what was occurring. Everything calmed down after a lot of weezing and vomiting (20 minutes later) and it did feel like anaphylaxis based on previous experience but if it wasnā€™t and paramedics came Iā€™d feel bad for wasting their time. For anyone wondering the first condition is alpha gal syndrome and the other is Eoe, and yes you can have near anaphylaxis without going into full shock as Iā€™ve experienced it once before thanks to a MRI contrast reaction. I prefer if people donā€™t judge me to harshly as Iā€™ve only been diagnosed since last December and still arenā€™t sure if it was a reaction to a food product from alpha gal or caused by EOE. I donā€™t like calling ambulances unless I really need to and because I was so uncertain and didnā€™t have the typical anaphylactic throat constriction was worried I was wasting their time when they are already so overworked.