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im getting sedated.. i'll still be conscious.. my procedures in 1 hour.. i just need to know the difference with sedation

You're preaching the gospel!! I've been living with EOE for over 10 years. Though diet elimination has helped my swallowing. Not by leaps & bounds but it has improved. I haven't experienced food impaction in a long time. Great vid!

It's a living hell, people don't understand what you mean when you say food gets stuck

How is your diet now? What foods did you open and how do you manage it. Can you summarize it for me please, very interested to know thank you!!!

I have been dealing with it my whole life so thank you

I was diagnosed with EOE 3 months but Ive had issues for a long time. What started as my throat slowly closing has turned into a situation that I can only drink elemental liquids. If is very tough to deal with. Thanks for sharing.

I sow another video where this person eat only nutricia nocato splahs (alergy to food)

Where training?

Hey thats Carissa

The fight lab tempe

i got EoE too! it sucks. right now i have 20+ allergies but alot of things that i was able to have for the longest time are now giving me trouble. my throat is rlly sore, and my acid reflux is worse then before. I was diagnosed when i was around 3 i think (idk i was young) im now 13. makes me feel better to have other people understand and relate with :)

Thanks for sharing...I def understand what you mean with the mental part :/ diagnosed a few months ago and after allergy testing they said I wasn't allergic to any foods but I was to dust mites and grasses..not really sure what to do about that though

I hope you are well ❤ Please update if possible.

You did a great job explaining it! And yes! The potato thing was weird when it happened to me. I could eat them fine.. then bam, trigger food. Nooooooo! 😢 anyway.. The point of view on stress and anxiety is HUGE and always gets understated. The anxiety and stress of not knowing when you can eat if you are out.. comes about because the rest of the world cross contaminates everything because they don’t have this issue. It’s only the start of the alienation and isolation you go through when your needs differ from others. You aren’t the same anymore and people shy away from hanging out with people like that.. So we can’t eat anywhere reasonably because if you’re in the progressive EoE camp.. you have like 5 of the 6 foods you’re allergic to (soy, gluten, egg, milk, nuts, seafood - which I’m allergic to all but soy), so when people talk about this disease, I usually only see people who have 1 allergic food, and they just stay away from it and they’re fine and live well. I’d say there’s a small portion of EoE patients have it full blown with massive numerous Allergies, eating only soft food (eventually liquid only), and experience insane nerve damage from the inflammation causing damage to their nerves over 10+ years of Pain.. good ole peripheral neuropathy. I avoid all my trigger foods, I food prep, and I ingest cannabis oil for the nerve pain. This has been the only way I feel 80% myself.. otherwise I wanna kill myself every second I’m in pain. That’s the truth people don’t wanna talk about. This is the depression disease. Anyone who reads this and hasn’t yet, please Reach out to your EOE community because it’s important to share your point of view and everything you’re going though. Also.. you can develop more allergies over time, as your immune system is always in flux and adjusting. So once people realize this is an immune system disease, it sinks in that it will have numerous other implications on your whole system. It’s not just about your Esophagus and the physical action of eating, similarly, the peripheral neuropathy had happened as a result of my food allergy and inflammation. Though both conditions for me have left permanent damage, I am happy that I caught this for what it was, as my doctors had no idea and I had to fight with them just to get an Endoscopy done. I used to be 320lb, 6’3”, power lifter who was a foodie and cooked all of the dinners for my family.. now in 2019, I started feeling truly sick, and annoying symptoms that I thought were just “getting older”.. I’m now 240lbs, I’ve lost most of my bodybuilding muscle and fat, and have gone through three big boughts of bodily weight shed. Where I was healthy, then diarrhea for 4-12 weeks at a time, leading to malnutrition due to fear/lack of eating. The peripheral neuropathy gets to the point where I couldn’t walk on some days. Feet feel like I’m walking on Swiss cheese riddled wooden blocks that I can’t feel, and burn in a way like your tailbone or spine is on fire. Jolts of needle pain go up my legs, and deeply into the bone in my foot and heel. A rare condition known as Palmoplantar Keratoderma also effects me, which I feared may be a red flag of Esophageal Cancer. I lose my balance easily, and have Scoliosis. I have fused vertebrae in my neck of my c1 and c2, which is common in individuals who have this disease. So the signs were there when I was little, it just went unchecked and I suffered by haphazard food elimination for over 20 years. I am still working with my GI doc and PCP but they don’t believe me, and a lot of the tests come back negative or not as severe readings because I already eliminated my foods and Medicate with cannabis. So unless I trigger myself into pure pain just so these doctors can witness it, that’s where I’m at. 🤷🏻‍♂️✌🏽

Just got diagnosed have had lots different symptoms just thought was heart burn then worsening nausea/vomiting. Tired all the time. I would eat sometimes and then vomit right after. They are starting me on a PPI I feel like I should go ahead and see an allergist.

This EOE is really bizarre. I have it too. just got diagnosed:(

I am legit crying watching this because I feel like you’re the only person that “gets it.” I’ve been doing this a year with EoE and I can only have liquids right now because I keep reacting. You’re so right about the mental symptoms. The fear of food is absolutely real. It’s so hard to want to try anything new when you never know if you’re going to react. I’m so glad I found your video and sooooooo sorry you’re going through this EoE junk too ❤️

I am new to having eoe and so glad i found your channel thank you for sharing and helping people

I just started my journey thank you

hi! i just got diagnosed, this video helped a lot. thank you for bringing light to this in a personal way, all i’ve been able to find are academic journals or videos by doctors. I’m scared, but i’m also ready to have this lifestyle change. thank you for helping!

How quick do you react? Does some meals you find don’t get stuck and then the trigger foods do? Or are foods getting stuck all the time?

What meds have you been taking? I am on dexilant and i was symptom free for 8 days then boom im sick for 9 hours today! I have thrown up everything in my stomach but still cant get the lump out of my my throat

THANK YOU!!!!! FOR SHARING

I remember getting food stuck in my throat when I was a child. But it always went down with a drink. As I got older it got worse. I was about 17-18 years old when I first experienced the food not going down with a drink. My throat filled with water and I couldn't breathe. I was basically drowning in my own throat. I ended up throwing up the water and forced myself to throw up to get the food to dislodge. I'm now 31 years old and it wasn't until last year that I found out it's all because I have EOE. I went on cleanse diet and discovered when I ate Soy I would get acid bad. I've cut soy out of my diet, but I'm still having problems. It seems like when I eat egg or dairy I'll have a reaction.

Thanks for sharing this! I was diagnosed recently after many years of symptoms. PPIs seem to relieve my symptoms entirely, which is great, although I'm not thrilled about having to take them for the rest of my life. My doctor recommended I just stay on PPIs since they are effective but I might try the elimination diet down the road someday...

I recently got diagnosed! I've had an endoscopy at least 5 times already. I've had some recent scar tissue he had to punch through and scrap. However, right after it I'm having a hard time eating or taking any pills. He wants me to have two swallowing tests with barium. My question is actually to anyone here including you too...have you had any swallowing tests done? What was the results if I may ask? Note I haven't been tested for any allergies whatsoever well at least so far. Thank you and or anyone in advance.

I repeatedly noticed something wrong, with my son. I went to doctor after doctor, diagnosed at 1 years 7 months ago. It is so hard because he has EoE and contact allergies to and people do not understand and he does not understand.

This is the best way I've seen EOE described. It is hard to get people to understand how much this effects our life's and how much it hurts. Thank you for this video.

Thank you for this video! I was diagnosed with EOE, food allergies, & sensitivities in 2015. I can totally relate! It is such a complicated journey.

I also have eoe I was diagnosed during summer and I couldn’t pronounce it it’s not easy say eosinophilic esophagitis I have 100 eosinophils and missed 5 months of school and I was chocking on a piece of steak at school and I couldn’t swallow and everyone was laughing because they thought I couldn’t eat correctly and have been getting bullied because of having to take my own food. I can’t go to sleepovers or birthday parties because of getting bullied over taking my lunch box with food. Everyone thinks I wanted attention I do not want attention for choking or puking everyday I’m only 11 and have to take my own food EVERYWHERE it’s very annoying

Thank you for sharing this. I was diagnosed more than 10 years ago. Until this moment, I had endoscopy 5 times. honestly I have allergic from the food same u have it already. So, I decided to stop eating it. Last time, I went to hospital and i explained to the emergency doctors what i have but he didn't believe me, because this reason I was staying 2 days in hospital waiting the doctors.

Thank you for sharing this. My 6 year old son was diagnosed with this (finally got an answer) after about 4 years of fighting with doctors that something is wrong and it wasn't just re-flux. We are currently working with the elimination diet (top 8) to see what might be the "trigger" which of course can change at any point. That also basically means he can have water and/or ice. Never realized how difficult it is to eliminate food and how tricky the FDA here in the states make reading the labels on food products. EOE sucks and I really like how much you opened up about it because my son is still very young and doesn't know how to describe anything he is going through this helps give me an idea of what he is dealing with currently. I have acid re-flux that can be uncomfortable to say the least but it is nothing compared to what he is going through. Thanks again for discussing this so openly really like to hear from a perspective that isn't from the medical field. Hopefully at some point there will be a cure for this so no one has to suffer with this.

After two and half years I finally got diagnosed!! No one believed me either! It's a weird feeling to be diagnosed and be happy at the same time! Great video! Thank you

Thanks for the video. Are you from Melbourne? Apparently EoE is worse in colder climates.

Hi Cassie, love your videos. I got diagnosed yesterday, am really scared and don’t know what to think.

I have EoE and sometimes have breathing issues.

I was diagnosed 7 months ago. I’m 35 and I’ve never had any history of food allergies. I started having symptoms 4 years ago and doctors told me is was just anxiety physically manifesting itself. Over time it reached a point where I couldn’t swallow food or medications without it feeling stuck in my chest. I finally saw a gastroenterologist who initially thought it was thrush from my asthma inhalers, which obviously was not the case. The endoscopy found inflammation in my stomach and upper intestine as well. A colonoscopy soon after showed inflammation throughout my lower bowel. So it’s pretty much my entire GI tract. To think it could have been addressed years ago if my doctors actually took my symptoms seriously.

I used to make hommus like that for Bella when she was on strict elimination diet but didn't roast the chickpeas. Great idea.

Hi Cassie, Great video - I felt like I was there with you walking around that park! I didn't know Sydney Park was that big either so next time we will share a map if we are hosting at locations that big! Glad you found the rest of the group and enjoyed the meet up :-)

Not sure if there is any eoe meetups like you had in Austrailia in the U.S.. The best thing that a friend found was a thing on Facebook. (I don't like it because it isn't support, it's just pity parties and not much of sharing stories and experiences). I have never met or known any one other than you to have this condition. It would be nice to meet someone local who does. It's always good to have someone to relate to, even if its for something as horrible as eoe. Oh and did you meet anyone who had the bad breathe? (just curious) -Twenty Five

With the last reason for mental, I would always simply pull up a chair, put in Battlefield 5 and headshot countless noobs until my sweaty try-hard K/D ratio is 5.0. No, I'm just kidding, although the game is definitely fun. Whenever I had my lows I would sort of day dream about foods. Until I wondered something (I'm allergic to wheat specifically, gluten, and wheat product)...and also keep in mind, this doesn't work for everyone, I would bake. I would find substitutes for everything milk (rice milk, soy milk, almond milk) eggs (I forgot what I substituted eggs with) and wheat flour (rice flour) and I would make cookies. I'm not sure if any one is allergic to sugar or anything, and if you are...im so sorry. It always made me happy to bake cookies that I could ACTUALLY eat for me and my family. It just always made me smile and kind of brought me out of the "low". But thank you for another video!

Thanks for this video! I’m 26 and I just got diagnosed in January. So all this is new to me! My symptoms are abdominal pain, nausea, and vomiting. I’m on the elimination diet too! And I’ve noticed also when I stick to my diet I feel healthy, and I get too confident and eat something like dairy or bread. And the cycle starts again for me too 😪 it’s good to stick together through this, I get really sad too sometimes. Have you tried vegan cheese and other alternatives? Also the ENJOY LIFE brand has a lot of foods to pick from too, all allergy free if anyone is ever craving “normal” foods ♥️

All this time I thought I just had really...reeeeeeaaaaaly bad acid reflux, and that I was a clumsy eater because I choke so easily...until I started having trouble swallowing and getting very nauseated with cold sweats and everything...I knew something was not right, (on top of all the other tummy troubles). So today, I had my first Endo/Colo and sure enough...the rings show so clearly. And, yes to the food sticking OMG! I thought it happened to everybody!!! All my life, I thought it was normal. Thank you for sharing with us, it sucks we have it but thankfully, we are not alone :)

With mine, the blood cells, as the doctor stated, produce extremely foul smelling breath. I cannot face people when I talk because of the breath. I have gotten many comments. And trust me, I brush my teeth every single day and mouthwash, but it doesn't help the breath. Described as more foul than the inside of someone's backside. But this video really helped. Thank you. Edit: I was reading other comments and you replied to one saying that if there are other topics you can cover, we can ask. I want to know if more people have the bad breath. It sometimes just helps to know you're not alone. And maybe is it possible you could cover the bad breath and maybe explain it? I know you MIGHT not be a medical professional, but you are definitely anecdotal and SOMETIMES "Hey doc, this is what I feel" is more important than a real diagnosis or an "Oh you'll be fine". But anyways, thank you. (=

I completely relate to your symptoms. I just got diagnosed with EoE.

Mayo Clinic says that it doesn't lead to esophageal cancer.

I was diagnosed with EoE two years ago, right before I went off to college. I’ve been experiencing symptoms for years, but I always thought that having food get stuck in my throat was normal. It would hurt so badly whenever I tried to swallow pills and everyone would just insist that I was just afraid to do it, and that I couldn’t swallow pills because of anxiety. I’ve had 3 episodes where I’ve ended up in the hospital because I was choking on food so badly that the Heimlich maneuver didn’t work and it wouldn’t go down. Lots of GI appointments and endoscopies later and here I am. My EoE is caused by a combination of acid reflux, and food allergies, although we’re looking into the possibility of environmental allergies having an effect as well, as I’ve tried almost every elimination diet under the sun, as well as taking pantoprozole daily for my reflux and going on and off budesonide, yet nothing seems to be working entirely. I also had to do a liquid diet after my first dilation for over a month because my esophagus was so damaged. I can emphasize with your video in so many ways. I don’t know anybody else with this condition, let alone anyone else close to my age so hearing your story really touched me. Hang in there, and hope all is well and that your EoE improves with time. Thank you for sharing your experience❤️

My dad and I both have EoE, and it's pretty awful. Mine is entirely allergic, so if I avoid the many (many!) foods I'm allergic to, I'm okay. (unfortunately one of those is soy so I'm just constantly having reactions anyways). I have a lot of the nausea/vomiting/reflux symptoms, less of the food getting stuck thing (tho I do have a ring in my esophagus from scar tissue ad that's...nice.) My dad, though, gets food stuck all the time. He's had several procedures to dilate his esophagus now, and I've sort of seen my future if I don't manage it, which is good incentive to never eat another apple again. Still its an awful, frustrating condition that people just don't understand. I lived with it for a good six or seven years undiagnosed because people told me I just had anxiety. The more awareness people can spread, the better. Best of luck to you and thank you for sharing. It's easy to feel alone with this, but it's nice to know we're not.

Thank you very much for your video. I learned a lot from your story. It's been rough living and learning. Then, I find you :) A-gain Thanks! Was and trying to live with it in Lima, Perú South America and Scottsville, Kentucky, USA.

Thanks for sharing your experiences!