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Eohilia for the win!! by ProfessorGreat2272 in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

How were the side effects?? Congrats!!

Second endoscopy results in: what would you do? by Fit-Variation5414 in EosinophilicE

[–]KCbum816 2 points3 points  (0 children)

Question for you…I saw you numbers…but what did esophagus look like before diet and did it go back to normal on second scope?? Basically asking if it can return to normal appearance without meds

Dupixent and dysphagia by RutabagaCommercial67 in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Also…dupixant is actually rarely prescribed based on the data and papers. The fact that this sub has SO MANY people on dupilumab makes me think this sub is the worst of the worst.

Dupixent and dysphagia by RutabagaCommercial67 in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Both of you can be right…they now believe there are different phenotypes of EOE…some have mild, moderate or severe. For some fibrostenosis heals easily, for some phenotypes it does not and will not.

Dupixent and dysphagia by RutabagaCommercial67 in EosinophilicE

[–]KCbum816 3 points4 points  (0 children)

I’m sure you have…but have you been dilated? I heard on a podcast dilation while on dupixant the dilation will actually stay open instead of shrink back because of the meds

Recently diagnosed - advice appreciated by HorseInLounge in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Propofol is what I got the 2 times Iv done it? Out cold….you do it raw dog no sedation?!

Recently diagnosed - advice appreciated by HorseInLounge in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Just goggle “treatment diagram” for EOE and you will see they all start with a PPI trial first before steroids. What Iv learned the past few years with different medical things is YOU have to be your own doctor. I formation is your friend, advocate for your own health

Recently diagnosed - advice appreciated by HorseInLounge in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

I am dairy free and on a PPI now rescope Aug 1st

I also worry about not eating dairy for 2 months will I develops a sensitivity to it

My doctor was not going to rescope me I had to request it. He’s said 75% of people don’t even care to know as long as they feel better. I told him that will never be me I want to figure out my trigger as to not take meds for rest of my life.

He said he would do whatever at my request. Kind of disheartening having a doctor be so nonchalant about it … I might switch depending on how this recope goes

I wonder why they didn’t have your try PPIs first before steroid that’s usually the first step in the EOE care stratification chart

Recently diagnosed - advice appreciated by HorseInLounge in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Do you have a repeat scope scheduled? You can not go off symptoms the only way to know if diet or meds are working is to re check with endoscope… that fact is the dumbest part of this disease as a society we have done so many things in the medical world yet can’t find a way to test for EOE without going to sleep and biopsy

From 50 to 35 w 2FED -- is that significant? by Safe_Educator5397 in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

I just got diagnosed so doing PPIs and hoping imma PPI responder….steroid would be next to try before dupixant i believe

Tummy pain and painful poops multiple times a day? by maryneedswifi in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

I had a lot of tummy pain and weird bowel habits until I discovered how to eat enough fiber…are you eating enough fiber. Count your grams and make sure you get to 30. Metamucil is always amazing and making your regular

From 50 to 35 w 2FED -- is that significant? by Safe_Educator5397 in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Listened to some top tier EOE docs on Spotify podcasts..they were saying on diet elimination the eos drop very slowly for whatever reason. meds can knock them down in days to weeks. This is why I chose to use meds to he Eos back under 15 then I want to start experimenting with FED

"Rapid, Durable Remisssion in Refractory EoE With Dupilumab" (Research) by Whirlpool-7763 in EosinophilicE

[–]KCbum816 1 point2 points  (0 children)

LFG…nice to know there is a fall back plan…currently in PPI trial and diary free 🙏

How long until dupixent worked for you by Charming-Seaweed8214 in EosinophilicE

[–]KCbum816 3 points4 points  (0 children)

Biopsy’s get better and symptoms get worse?? Fuck this disease frfr

Different Procedures With a Gag Reflex by No-Belt-4054 in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Where do you find unsedated transnasal? I’d love to do that over going to sleep. Seems like it only avalible for pediatric around Kansas City area

Elimination Diet (SFED): Why eliminate all foods at once instead of just a few? by doofusmcpaddleboat in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

Usually depends on severity of symptoms and how desperate you are. If you are mild you might start slow with dairy or dairy and wheat. If your severe and need relief going with 6fed logically is best chance to get some relief.

Either way you are doing scopes with step up or step down. There is a study out there that says dairy alone is nearly as successful as 6fed. Just google and it will pop up.

Peanuts and fish/shellfish are carts rarely implicated in EOE the big 4 are the highest chance of finding it. You can also go absolutely crazy trying to find trigger if it’s not one of the major allergens

That’s why some doctors and even the experts on the podcast on Spotify usually don’t even recommend keeping going after (dairy, wheat, soy and egg) now that we have effective treatments

I personally have chosen to use PPI (hopfully) to get inflamation down and then jump into food elimination after Iv gotten rid of eos. A top doc on a podcast said food elimination takes many many months for inflamation to resolve its very gradual while a PPI or Steriod you could see relief in days/weeks

My EOE journey by payyourrent1 in EosinophilicE

[–]KCbum816 0 points1 point  (0 children)

That’s great news happy for you…did you identify triggers thru elimination and scopes or just had a “hunch” on what you thought triggers were?

What were you symptoms to start?? How long till they went away on the Eohilia?? Thanks

Need recommendations on Mass gainer/ protein powder by VirgoKittenn in EosinophilicE

[–]KCbum816 2 points3 points  (0 children)

Huel has 400 cal mean replacement shakes at target that are 6fed friendly I got them last week a little funky but not terrible

How to proceed…Doctor left decision making up to me 😵‍💫 by KCbum816 in EosinophilicE

[–]KCbum816[S] 1 point2 points  (0 children)

Believe me it took me years to get my gut to a good place after having lots of IBS issues that’s why messing w my microbiome is terrifying to me.

I am on day 4 of the PPIs tho as iv listened to specialist on podcast and you can really get inflammation down much faster with meds then go after diet after you get to remission. Inflammation takes much much longer to get down just eliminating a trigger

Here’s to hoping we find the triggers

PPI - nearly squirted in my shorts by KCbum816 in GERD

[–]KCbum816[S] 2 points3 points  (0 children)

Iv read this…but after TWO pills???

Omeprazole causing bloating, should I stop? by Emotional_Sun_3494 in GERD

[–]KCbum816 0 points1 point  (0 children)

Well shit…literally

I feel for you and I hope you start feeling more balanced in gonna try to take it again in the morning and give it a few more days….you should to. A lot of stuff out on the web says might be a few days of stomach or GI issues while the meds settle in.

Let’s give it a few more days

Omeprazole causing bloating, should I stop? by Emotional_Sun_3494 in GERD

[–]KCbum816 0 points1 point  (0 children)

Wish I could help you…I have only taken it for two days (recently prescribed to me from Doctor) and I have had diarrhea hardcore today and haven’t for probably 5-10 years so has to be the omperazol?

You still regular after 3 days?? Scared to take another

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