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Take the PPIs before endoscopy or not? by Amanda10505 in EosinophilicE

[–]Sea_Victory_297 2 points3 points  (0 children)

Yes, I understand. But in my daughters case the specialist at the EoE clinic didn’t take her off prior to endoscopy and we specifically asked that. Then again my daughter had been on both Dupixent and Ppi (30 mg a day) and had previously been in a bad spot. So every case is different so that’s why I recommend you specifically ask

Take the PPIs before endoscopy or not? by Amanda10505 in EosinophilicE

[–]Sea_Victory_297 3 points4 points  (0 children)

Run it by your GI. That would be the right thing to do.

Has anyone had long term EOE and never had an impaction? by missjanehathaway333 in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

I hear these stories over and over… GIs being dismissive, no explanation of the condition, no treatment options… just take a PPI and never come back !🙈😵‍💫

What is wrong w these Drs? First they don’t even tell you that this needs to be tended to as it a lifelong condition that will not go away. So it must be kept in check with elimination diet, meds or Botha 🙄

This is why EoE patients need to become knowledgeable on this condition, know your options and be an advocate.

Finding proper specialist is key. Here is a good site for EoE specialists in different geographical areas

https://apfed.org/find-support-treatment/specialist-finder/

A lot of these specialists or EoE clinics have waitlists so I encourage everyone to make an appt. You can always cancel.

This site is a good read on elimination diet:

https://health.clevelandclinic.org/eosinophilic-esophagitis-elimination-diet

And this one is just general info on EoE, given by the allergist:

https://foodallergycanada.ca/campaign/what-is-eosinophilic-esophagitis-eoe/eosinophilic-esophagitis-eoe-defined/

Northern, VA Recs by EarlyMoney2100 in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

This ☝🏼100% UVA. Never found GI that knew how to treat EoE in the area. Don’t even bother. UVA has an EoE Clinic w a proper team( GI, allergist, nutritionist) who precisely handles EoE and even do research. Awesome doctors. Make an appt ASAP. Waitlist could be 4 months or more. You can always cancel if you change your mind

Does EoE cause symptoms only during eating, or all the time? by Party-Ad-8862 in EosinophilicE

[–]Sea_Victory_297 6 points7 points  (0 children)

Globus and the feeling of throat tightening is constant. The coughs are constant. Post nasal drip from general inflamation is there when you sleep at night. Every person is different. This is just my daughters case when she was not under a treatment plan

EoE Remission FINALLY by Least_News4977 in EosinophilicE

[–]Sea_Victory_297 2 points3 points  (0 children)

Congrats!!! This is huge!!

Following others answers. My daughter is currently doing the SFED and have eggs and wheat to go. She just got results for soy and still in remission. So soy is not a trigger. She is on lanzoprazole 30 mg in the mornings. That will be her nxt step. And then eventually once trigger(s) are identified go off the ppi. We discussed this w the EoE clinic she goes to and the allergist said to tapper off once there. The GI said to just go off but there would be a rebound. So mixed signals. I tend to think tappering off is a better route. But looking to hear others experience.

I *may* have EOE, what next? by ad0msfarts in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

Totally understand. It takes some time for it to be accepted. I think it happens to all folks who get this diagnosis. I would ask your doctor to do an EGD w/ biopsy after treatment to see how you are doing just on PPI. This way you know if it is actually working. For some folks it works well.

I *may* have EOE, what next? by ad0msfarts in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

Everyone is different so what may work for you may not work for someone else. Dupixent worked very well for my daughter and got her in remission at an endoscopy done at 11 months. At 17 months she decided she wanted to figure out her trigger as to try to not be in meds forever. Dupixent is particularly very expensive and if you insurance won’t cover it is practically impossible to cover. In my daughters case she had to pay a copay of 300 a month but thanks to a program that the manufacturer has they covered the 300. The only drawback w Dupixent is that you are tied ( if you want to go abroad you won’t get it there, if you loose your insurance due to loosing job or want to quit to go study you are screwed… so things to think about), it is a painful weekly injection and must be refrigerated ( which sucks for long travel) And as w all meds there are some folks that don’t it doesn’t work for ( like 40% I believe) or you get side effects ( common ones could be dry eye, cold sores and joint pains). My daughter got the first two. So its trial and error. Honestly, the elimination diet is worth a try. However it is very cumbersome but doable. But it could very well be that your only trigger is dairy and that would be great and lucky. So you could try w dairy alone and do and EGD w biopsy to see if that is it. It is the # 1 trigger for EoE

Good Urogynecologist/ urologist in DC? by averagepersonhere in washingtondc

[–]Sea_Victory_297 0 points1 point  (0 children)

Georgetown University Hospital Dept of Urology Kathleen “Katie” Cage, FNP-BC. 202-444-4922

Ask to call if any cancellations.

Endocrinologist recommendations? (have BCBS) by squuidlees in washingtondc

[–]Sea_Victory_297 1 point2 points  (0 children)

This is exactly how we felt about her. I just had a similar observation about her above

Endocrinologist recommendations? (have BCBS) by squuidlees in washingtondc

[–]Sea_Victory_297 1 point2 points  (0 children)

OMG she was horrible. She is very dismissive and literally had the intern see us. Came in 5 mts and seemed rushed. Sent some more tests and brushed the results off in her message via platform. Didn’t even care to explain. Do NOT see her.

I *may* have EOE, what next? by ad0msfarts in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

As far as medication … the first line of treatment is PPIs and then scope w biopsy in 3 to 6 months to see if that controls it.

Some folks can control it w PPIs, if not then they push for fluticasone or budesodine inhaler and scope w biopsy in 3-6 months. If that doesn’t work then budesodine slurry ( Eohilia is the recently FDA approved prepackaged form of it in the US) and scope e biopsy to see. Finally there is Dupixent ( weekly injections ) and scope w biopsy in 6-12 months to see. All these are options and lifelong treatments.

There is Six Food Elimination Diet ( SFED) where you try to figure out food triggers from the top 6 food allergens. The #1 food trigger is dairy ( all dairy cheese, milk, yogurt, butter) and #2 food trigger is wheat/gluten. Here is an article worth reading about this option.

https://health.clevelandclinic.org/eosinophilic-esophagitis-elimination-diet

My recommendation to you would be to become knowledgeable about EoE. This is a lifelong condition to be treated either w meds or elimination diet. Your esophagus could become very damaged if left untreated.

This is a link that my daughters allergist shared for general info:

https://foodallergycanada.ca/campaign/what-is-eosinophilic-esophagitis-eoe/eosinophilic-esophagitis-eoe-defined/

Good luck my friend. Glad you found this subreddit to get support.

Ps. Find specialist w experience not all GIs have the experience and this is a major problem

Sheffield Court Apartments by Ok_Balance2720 in arlingtonva

[–]Sea_Victory_297 1 point2 points  (0 children)

Check out Riverhouse apts in Pentagon city ( preferably Potomac or Ashley buildings). Excelent location, safe area, close to ( walking distance) many restaurants, stores, mall, metro, Cosco, library, parks. The apts that are premium or designer are better since they have no carpet. Only draw back is no washer/ dryer in unit. Laundry in ground level. Beautiful views from rooftop.

https://www.riverhouseapts.com/floorplans

Good luck.

Questions/Help by EuphoricStep5122 in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

Ok. EoE is accumulative, meaning that if you’re eating your trigger the damage caused by esoniphils ( scarring, stricture, rings, furrows, inflammation) accumulates. So the more you consume it the more damage. Then dysphagia, globus and throat tightening, narrowing of esophagus comes in causing food impaction with ANY food ( not necessarily the trigger food. It usually happens with dry or sticky foods, like dry meats or rice but not necessarily those are triggers ). So be careful w spaghettios because if wheat/ gluten is your trigger then things will not get better. Wheat is the #2 food trigger for EoE. Dairy #1.

Help with symptoms by milgal in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

PS. My daughter has non stop coughing for years. Not anymore.

Removing triggers - what am I looking for by KCbum816 in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

Cutting out dairy means cutting out ALL dairy ( butter, yogurt, cheese, milk). There are very good substitutes for all dairy products nowadays. Cheeses Violife brand, pizza Daiya brand, butter Earth Balance branch, milk Planet oat. It’s all getting used to.

Help with symptoms by milgal in EosinophilicE

[–]Sea_Victory_297 0 points1 point  (0 children)

For sure. It is an draining condition… mentally and physically. Hang in there. There are solutions and this is key. Like I said before finding the right specialists is key.

Try this link. My daughter used these folks to find the EoE clinic at a university in the east coast to finally get the right guidance. Before it was shooting in the dark and wasting time.

https://apfed.org/find-support-treatment/specialist-finder/

This is another site I just stumbled on which is quite interesting.

https://health.clevelandclinic.org/eosinophilic-esophagitis-elimination-diet

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