A patient's experience with eosinophilic esophagitis.
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- Опубликовано: 2 янв 2014
- Avani, age 9, and her parents, talk about her experience with eosinophilic esophagitis, an allergic reaction that causes damage and inflammation to the esophagus which affects her ability to eat. They explain how the pediatric specialists at Swedish Medical Center helped Avani get back to living a normal and healthy life. For more information, call 206-215-6005 or visit www.swedish.org/pediatricGI.
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Avani you’re strong you got this.
I’ve suffered from dysphagia for four years now and it’s really depressing. a hoarse voice for months and stomach pain every morning for years .Took almost every dose of ppis and nothing improved my dysphagia. I had an endoscopic procedure last week and there’s no abnormality in my esophagus to justify my trouble swallowing,the doc suspects EOE , just waiting for my test results . My prayers for all of you who suffer from this I wish things get better for you!
Hi, how did it go?
Avani is amazing. I hear she is getting better. Happy for her.
-her sister, Brinda
She is much better now and we always look back at this video! Avani has grown so much and this video shows just that!
-Her friend, Rima
What tests can be done to rule if someone has this disease? My main symptom is heartburn but no vomiting.
@@Unlimited0X endoscopy
@@alfverse450 endoscopy.
May I ask what treatment?
She’s adorable ! Hope you’re feeling better 💗💗
I recently found out I had this. Since I was 13 I have felt chest pain and vomitting after eating certain foods. My parents were very down on me and didn’t listen, they thought I was bulimic.. which was not the case. I realized that certain foods were the cause and would tell people i was allergic to it, my parents never believed me. I LOVE FOOD!! It honestly hurt me a lot mentally for my parents to not believe me. I have GERD now because of the damage to my esophagus. If only my parents listened
How's your health condition now? I have gerd also and now i have similar symptoms to eusinophilic esophagitis.. plsss let me know your health now and how you deal with it? 😭😭
i have a similar story! Luckily my parents listen to me... most of the time, but doctors are a different story. A lot of them for many years (i've been symptomatic since i was 11, now i'm 18 and still not diagnosed, but getting there, hopefully) doctors told me "just take smaller bites, hon!" "chew your food more carefully next time" "there's nothing wrong, it's all in your head" "you're making yourself throw up, but you don't have to! there's nothing actually stuck in your throat!" Big eyerolls like that. one suspected GERD and put me on meds for a year that didn't work. Finally, my current Dr agreed with me that it wasn't normal (and not anorexia, like other nurses and my fellow students all thought) and she asked me if i'd ever heard of EoE. The symptoms all match, it makes perfect sense. I got an endoscopy 4 months ago, but I'm pretty sure the results are negative, (i think the doc only took 2 out of the recommended 4-5 biospies of the esophagus to test) but I wouldn't know because 4 months later we still haven't followed up, because my parents have been busy with other stuff and this kind of got put down and never really picked back up :.) But i know how it feels to be invalidated and not listened to when you know something is wrong.
I have EOE and OCD. At my worst, I was convinced every food would poison my and force-choke me. At age 10, I had a total of over 200 eosinophils in my system. Two years later, I still take steroids and choke, but I am getting better.
It took 3 yrs to tell me my son has this and other things it’s been so hard I understand what you have gone tho god bless
what tests can doctors do to determine that this is the case?
I have eosinophilic esophagitis but it has become much much better since I stopped eating gluten a few years ago. But what has finally helped me is the supplement MSM, Methylsulfonylmethane, that is organic sulphur which is perfectly safe and also inexpensive. I originally started taking it because it may help agains hay feaver, but unexpectantly it also turned out to be effective against eosinophilic esophagitis. I've had much less problems with my esophagues since I started taking it daily, and that's why I highly recommend it. Remember, however, to drink enough of it. In my case I need to drink at least one teaspoon a day (start with a low dose - read advice on how to use it online).
If anything gets stuck in my throat, I try to swallow water with MSM, for example one spoon for a third of a glass. MSM reduces inflammation (and has many other effects) and seems to work quickly, at least that's my experience.
As I see it, researchers should do a study on the efficasy of MSM for people with eosinophilic esophagitis, both as a long term treatment (in combination with food restriction), as well as treating people with e e who got food stuck in their throat.
What do you prefer, using a supplement that has probably hundrends of beneficial effects in your body, or stereoides with known side effects, or risky and costly operations to remove food pieces and / or dilatation with a balloon.
I’ve just been diagnosed with Lymphocytic Esophagitis & it seems to mimic EOE (without the esinophylls?) so I have No Clue what to do & cannot be allergy tested bc I’ve been on hydroxyzine since 1999 & doctors said that kinda adheres to your veins & is hard to get out of your system in order to allergy test properly. I have no idea what to do & more questions than answers. I’m also a disabled veteran so the VA isn’t going to help me at all….
Thanks for the advice. I bought a bottle of the MSM the other day. I plan on adding 1/2 tsp to 8 oz. of water and drink it before every meal. The Proton Pump Inhibitors my GI doctor prescribed did nothing but give me a terrible case of Rosacea.
@@Finnador It is a good idea to combine the MSM with some vitamin C, since they are synergistic, (= the combined power of working together that is greater than the power achieved by working separately)
Sounds good. I'll give it a try. Thanks!@@solvarmsten8822
I also have eoe I was diagnosed at 9yrs and. For me I have to chew my food up really well.
I just found out my 1 year old daughter has this and it hasn't been easy at all
I have eoe and I am 12 and I only on a two thing diet and it’s dairy and wheat
My little cousin has that she was diagnosed before age 2
I have this but it makes it hard to breath
How to decrease it
I have it too. I’ve eliminated 3 foods the main one. Dairy, Soy and Gluten. I’ve been admitted 5 times in 13 now but have been suffering and still continue to suffer for 1 year
but why if you took out the allergic food. maybe you have more allergies
The comment section scaried me. I was diagnosed with EoE recently, with a kind of great proccess of inflamation, and I still haven’t gone to the alergist, but I what makes me curious is the fact that I don’t feel half of the symptoms described here. I mean, sometimes the food stucks, but 95% of the time I can eat bread, drink milk, coffee, eat fish, fruits, even pizza, hamburger, hot dog, without even drinking and feel good with that. It is really hard for me to vomit, I think since I noticed this symphtom, 3 years ago, I face 6 or 7 situations of severe stuck, that couldn’t be solved with a cup of water.
So I really dont know how I can eat and drink most of the things, without feeling the symptoms most of the time, and still have EoE.
the symptoms are different for everyone, I'm glad that you feel your symptoms are manageable though! That's great news. personally, water doesn't help my food impaction, it just makes it more painful, but that gives me hope as a potential patient of EoE that not all cases are that bad :)
I've also 15% how will I decrease it
I m suffering from this now its really bad
I have eoe too and I’m on a 13 food elimination diet.
Can you plzzz tell me are you getting better?
I have eoe too and I’m 15, turning 16 this year. It too the doctors 11 years to diagnose me
Same here that’s why I came here
5 years for me to diagnose. what is your treatment?
Wow now I feel lucky. It took them only like 5-6weeks. They said it came up from my OIT therapy
@@baboom007 my treatment is taking flovent for esophageal inflammation, and Reactine. Used to be on like 10 different meds but it reduced over the years because of drastic improvements. @VenusGhost, @Adi Adrian, @Golden muffin, wanna start an eoe group chat?
i've been symptomatic since i was 11. For years dismissive doctors kept telling me nothing was wrong, it's all in my head, i'm just taking too big of bites and need to "do a better job chewing". when i was 16 they thought it was GERD causing my esophageal spasms, so they put me on prilosec for a year and it did nothing. now i'm 18 and finally one doctor is taking me seriously. I hadn't heard about EoE until this year, and after months of research, I can see why my current doc thinks this may be it. I think it's the only suitable explenation, i just had an endoscopy done 4 months ago and I still need to follow up, but i think it came back negative :/. (the doc only tool two biopsoes in the esophagus tho, so I probably have it anyway). My thoughts and prayers go out to Avani, and I'm so glad she has diagnosis and treatment! this illness is not easy to live with, bless her family and her doctors as well.
I too have workaholic esophagitis, same exact symptoms. But, my doctor is Dr Banarjee in toledo. He told me too stay off of dairy too. Stay strong Avani, you're doing great. I found out when I was 11.
It feels like I'm taking stomach medicine every day
I have it two and I am on an 8 food elimination diet and have been admitted 12 times and I am 13.
Tiefer Boss I have the same thing. I have been on the six food elimination diet (not 8) 3 times. Currently it’s a real struggle but I know exactly how you feel
Plz share items names
I am 11 and I have eoe and can’t have dairy
I am 13 and i have eoe. I got all of my foods eliminated at a very young age. It sucks not being able to have the foods that my peers eat.
I’m 14 and i’m going through the same thing, you’re not alone 😊😊
@@elleestlaune6945 yooooo fellow EOE gang
hopefully not for long w dupixent being FDA approved 🤞
@@lizzion i'm on flovent and an acid reducer so far symptoms are improving and i'm starting to eat foods i couldn't :D
@@elleestlaune6945 yay!!!! im on flovent but it wasn't working for me ;-; so dupixent???
edit: well it was but just not enough for my needs :]
@@lizzion Yeah they upped my dose too and now i feel so much better, i can eat some of the foods i was told to avoid and i’m so happy
I got diagnosed with eoe and esophageal asthma today after 4 years of thinking it was acid reflux, now im allergic to every tree nut, milk, lactose intolerant, eggs, and dealing with it. The doctor also found a spot on my stomach that could be cancerous. Hopefully I make it through this, if any has any tips please let me know, i just turned 19 in march.
Did you get the vaccine?
Adam Weaver, was the spot cancer?
I'm an eoe patient too. I found out when I was 18, my throat is narrow and I'm learning to still do the elimination diet even tho I'm going to miss so many foods
what are your food allergies?
@SC FREIBURG Hi. I have some questions because i am desperate. 1. How did you find what your allergies are. 2. How long did you take corticosteroids.
My problem is that i eliminated the 6 foods and i feel worse. I feel more exhausted, sleepy and depressed and the stomach problems are still there. Above that my arms and legs hurt. I am still taking drugs from March although i told my doctor i don't want to take them anymore but he said to take them. I really don't know what to do
@@baboom007 hi similar to mine. How's your health condition now??
@@maricelamoy5803 It's not great because i am on Imuran, Pentasa and Predisone. And now my doctor tells me it seems i have Crohn too and he wants me to take Remicade. I really don't know what to think anymore
@@baboom007 can i message you privately? Or else just message me on my gmail: amoymaricel@gmail.com. i wanna speak about this😭.. i'm suffering now. Hope you can read this message..
I just got diagnosed with this and it sucks. I'm pretty sure it was caused by a medication I was prescribed.
Advenco same here mines didn’t start until I was given cortisol shot
Audrey Wallace This is why I hate taking medication. I was having stomach problems, and I tried waiting it out but it just wouldn't go away. I eventually went to my doctor and she prescribed me Omeprazole. I ingested ONE pill and ever since then I've had EoE. It really aggravates me.
Advenco omg how are you recovering
Audrey Wallace I'm taking Budesonide by mouth every day. It's an oral solution that you take like a shot glass.
However, this may only be temporary, so if after taking the medication I am still experiencing problems, I'll have to do an elimination diet to figure out what I am "allergic to". It's been proven to be effective for most people with EoE.
If you want more information, go on the EoE subreddit. Just google "Reddit EoE" and it should be the first link.
Avani it is very easy to cure in yoga pranayam don't go allopathic way
I think the only cure is to do a fast to reset your body
l got it
Sir muja bhi hi kya karo please 9759219455
@@ashusharma5740 bro happy to say that I got cure from it completely within in a month by yoga and pranayam
@@basudevsahoo1033 sir kon si yoga karni please sir please mi ap par pakdta please mi bhut prasan ho 9759219455 please call sir
@@basudevsahoo1033 Bhai plz mujhe bhi naam bata do yoga & pranayam k...
well, simply do anulomvilom 15-20 minutes with acupressure for 2-3months
Do yoga pranayama baba ramdev. 💯 Percent cure.
can she survive in India 😂😂😂😂