A Day in the Life with Eosinophilic Esophagitis www.eoeguru.com
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- เผยแพร่เมื่อ 6 ก.ย. 2024
- Wonder what it's like to have Eosinophilic Esophagitis? Well, here's a typical "day in the life" of someone with EoE.
Learn more at my website and podcast www.eoeguru.com
Nobody in my house understands how I feel with this. They can eat whatever they’d like while I’m stuck eating two pureed drinks. It’s very frustrating because I have to cook for the rest of the family and see all the food I can’t eat, right in front of me. I can only do extremely well puréed drinks and I have to strain them from anything. This is such a tough autoimmune disease.
My family thinks it’s all in my head. And can’t understand how I feel not eating solid foods for nearly three weeks now. It’s so terrible. I feel like I’m going crazy.
My niece is 22 and have been going through the same situation for a while now.. Prayers to all who deal with this..
I just wanted to come in here and thank you for this video. It really touched me and made me remember I'm not alone in this. I was diagnosed about a month ago and I have not gotten to the allergist yet, but at least I'm in my way to help. Hugs!
Same here! Thanks!
Just diagnosed myself! Praying God gives us cure and strength to hang on until they do.
I have had EoE my whole life and no one ever understood what I meant when I said food was getting stuck in my throat. They just told me I had heart burn. I finally got diagnosed about a month ago and I didn’t realize there were a lot more people going through the same things
@@liltanny7026 Same here, people told me I was eating too fast even though it wasn't my fault at all. So stupid.
I've had eoe since i was two and it's only gotten worse since, I have never met anyone with my condition before so reading these comments about alll these people that struggle too was really refreshing. So thank you to everyone who shared their story.
Have you tried Budesonide? My numbers were in the 1000. Now I’m at 5. I can eat everything now
I've had this disorder for about 12 years but did not know what it was (I am 68). I feel your pain. In Sept of 2020 I had to go to the ER. Long story short--ER doctor told me I had esophageal cancer (from looking at a scan). Then the gastro doc said they had to do an endoscopy. Found impacted food midway down the esophagus (no cancer). He took biopsies and told me I had EOE. Anyway....most days I am fine...but it is a constant reminder to chew my food extensively....dense meat (steak, pork chops, dry chicken breast) and crusty breads will do me in. I was allergy tested and did not have a reaction on my skin for anything they tested on me. But we all know that even though the tests show no allergy--only thru the elimination diet will you have a chance at finding out what exactly are your trigger(s). I am always on the watch for how other people handle this condition and recently learned that coconut oil is good to take before and after eating. Before a meat rich meal, I will let a half teaspoon of organic coconut oil dissolve in my mouth and then swallow. Supposedly coconut oil is very medicinal and healing. I still eat slowly and chew alot, but I have had good luck with the coconut oil. Since I have been on this regimen--I have not had a food back up in almost 3 weeks. It could be a fluke and it may not help everyone, but I wanted to put it out there.
Thank you, I will try this!
I developed symptoms in August 2019. By Thanksgiving I had adopted a liquid\puree diet which continued for about 6 months. I lost nearly 40 lbs in about 3 months. I was convinced I had esophageal cancer. It took months to get in with gastro for a scope and then coronavirus hit and I’ve yet to get a scope. I realized I’d have to figure this out on my own so I started keeping a strict food journal. I noticed flare ups with odd foods that aren’t generally linked to allergies: bananas, avocados, tomatoes, spinach, etc. I spent a lot of time researching and realized all the foods that gave me issues were linked to histamine intolerance. I adopted a strict low histamine diet. Within a week I was eating solid foods again. I have had zero issues since adopting this diet. I’m still healing and early on if I had a weak moment and ate something I shouldn’t have I’d have a flare up but over the last several months my body seems to get better and better at handling histamine. Right now I essentially have zero symptoms with my diet and Im finally able to have a cheat meal without it affecting me too much. Everybody is different, my diet might not work for you but I’m happy to share details in the hopes it could help someone else because I know the hell that eoe can be. Keep a food journal and stay positive!
My husband can’t eat those foods either.. but tomato he seems to be ok with. Wheat is the one thing he reacts to the worst. What is a histamine? I need to research this! Thanks for posting
Oh if you could go into detail- I really need my doctors to see this...
Thank you for telling your story. I had a similar experience and lost weight recently. After alot of research I suspected histamines as well. A few weeks ago i went for an endoscopy and they dilated my esophagus. I would like to try this diet to see if it works for me also. Any tips on where to look would be helpful.
If you could explain your diet that would be so incredibly helpful or even consider doing a video yourself. Thanks for the info and encouragement so far Aaron!
@@pnwbluesky76 Yes, I'd love to share what worked for me in more detail, I'll try to here within the next few days but here is a start www.healthline.com/health/low-histamine-diet#pros-and-cons. My diet was pretty strict for a while but it has absolutely worked. I dealt with EOE for around a year and today I think I'm in remission, haven't had symptoms for a few months but it does taken me time to get this point. One thing that also I think really helped was getting on a daily anti-histamine. I tried a few but the one that I think really started to make the biggest difference was Xyzal.
I'm praying for you! My son was recently diagnosed with EOE and we will be starting the elimination diet early next week. Thank you for sharing your story, hang in there, you are healed by Jesus Christ stripes🙏
My husband has had this for years and it’s been horrible. But the last time he went through it the Lord led me to pray as if it was spiritual. He went through a very strange deliverance in the middle of choking. It was quite intense. He hasn’t had a reaction sense and we’re trying to believe and have faith he really is healed! But every once in a while his throat feels sensitive and it makes us nervous again. I will pray for your son! I can’t imagine having a child with it. I pray so much my kids will never develop it.
I had these symptoms for years, I was told that I had reflux. My son has same symptoms and GI gave him budesonide oral to reduce inflammation in his esophagus. He was better after steroids but months passed he started chocking again. We will see GI again next week. I will start strict diet for him. I am just worrying, he is so young to follow a strict diet. How is your son?
I haven't been diagnosed yet, but have been struggling with EOE symptom for over 30 years. I've struggled with severe seasonal allergies all my life and began taking steroids before I can even remember. I'm excited to start the elimination diet.
Prayers to everyone who is struggling with this. 🙏
We don't know each other & I thank you for sharing your journey with us. My telling you I am praying for you may seem shallow but please know it is not intended as so. My decades long journey could not be sustainable without Jesus by my side therefore I pray the same comfort for you. I have railed, screamed and waved my fists at God but he has forgiven me and stayed with me. May he provide for you some form of hope. 🙏
I have been struggling with EoE for almost 20 years now. After trying a lot of things I found out that boiling or heating up the food I'm allergical to makes me being able to eat it.
Also fasting every now and then and staying away from stress seems to help.
I was recently diagnosed with absent contractility on top of my pre-existing EoE after visiting top docs at Northwestern, they concluded mechanics of swallowing just aren't working. I'm early 20's and glad you posted this so I don't feel so alone in my struggles. It is constantly hard for me to breathe and I feel like I'm dying after eating sometimes, running around pacing, barely able to catch a breath and move the food down or at least get rid of the sensation of food being hung up in my esophagus.
What's your condition since you posted this comment?
I have this disease and have a severe stricture at the top of my esophagus like yours. So I’m risking my life every time I eat like you, not just food impactions. Thank you for making this video. The thoughts the have, and the way you have to live your life is similar to mine. I hate you are suffering too but I’m glad to know that I’m not alone. I watched this video and was like man that’s how I’m living. I hope one day there is a easily solution to this disease. Keep holding on, keep fighting.
How many doctors did you see concerning this disease..?
How are you doing @rickdom68 these days?
Thank you for this video! Recently diagnosed and just getting started exploring my options.
I was diagnosed nearly three years ago. I’ve managed it pretty well, but I still can’t eat some foods, and my gag reflex is constantly stimulated during a bad week. I can’t eat seaweed salad, cooked spinach, or grilled cheese/pizza without beginning to choke, or at the very least, pushing my luck. I’m getting through it as best I can. Thank you for bringing more awareness to this disease!
Is coconut milk OK?
Man I been dealing with this as a kid … froster parents would think I didn’t want to eat my food but I wanted to just couldn’t now as an adult I deal with it really bad. Had 2 surgery’s for it. Just got out the ER earlier today. Feeling better thank you for the tips and videos
Hey brother! I've got this too. It's awful. I've found that most sugars and grains except for brown rice are pretty triggering. Bananas REALLY mess with me. I love bananas, but I just can't do it. I also can't do most melons unless they are super fresh from the store. Pills for me are basically a death sentence - they really inflame my esophagus, so if I ever have a headache, I have to take liquid medicine.
It's a funny illness, but I'm confident we can figure this out.
Go Cougars!
I was diagnosed with eoe and I’m only 11 so I didn’t really get that I could choke on food if I ate whatever I’m allergic to and I meet with my gi doctor and I am going to get an endoscopy and I’m excited because I won’t have to cut out dairy,soy,gluten,nuts,eggs,and sea food and I will finally not have to take my own food to my friends house for sleepovers and birthday parties 🙌🏻
My son was just recently diagnosed with this thank you so much for this video
Hey man hang in there I feel your pain. Been dealing with EOE for awhile now. It’s exhausting, keep fighting
I had no idea that my esophagitis could have been triggered by my allergies! Constant battle with nausea and swallowing big bites. Omg I’m gonna try to really pay attention and do elimination diets to see what works. Also adopting the shakes for meals option. Thanks!😄
I just had an allergy test and found a lot of food allergies..nuts, soy, barley, even rice. So it is really good to have done so you know what to eliminate
Thanks for posting. I'm struggling with this now. Trying to figure out what I'm allergic to.
I really want to thank you for this raw and honest video. This is honestly our reality daily and I’m grateful that you’ve shared this day with us. I never thought about making smoothies for breakfast - I’m definitely going to try it. My flare ups usually occur in the evening so dinner becomes nonexistent. I’m wishing you comfort & hope you find relief soon!
Wow I’m SO grateful I am across your videos. My husband has had this for years. For him there are obvious food triggers and sometimes a new food will trigger it. Normally he has no problem eating (the foods he can eat which are few) but when he has a reaction it hits within seconds and his throat completely closes and he can’t breathe. He’s had no help or answers from doctors and we figured it all out by ourselves. He used to go from many reactions a year to one every couple of years once we found out the main culprits. He now mainly lives off smoothies. It’s very encouraging to see more people talk about it. We’ve felt so alone over the years and so misunderstood. I wish though his reactions weren’t so severe. I’m excited to show him your channel. Thank you and I pray for continuous healing and discovery for you and everyone that needs it!
That’s not just eoe then. That’s something worse, eoe doesn’t affect your regular breathing, just makes the deeper part of throat irritated. Not the trachea
Thank you so much for this video bringing awareness to living with EoE. My 11 year old son was diagnosed 20 days ago. It’s such a difficult condition because there are no tests that can detect what causes EoE as EoE allergens have delayed response. After allergy tests when he was little detected peanut and tree nut allergy but nothing else. He always complained that he couldn’t eat most fruits and potatoes bcs they bothered him. At first we and his pediatrician thought he was just being a picky eater. But as he grew older I came to realize he indeed couldn’t tolerate many foods. I took him back for another allergy test 5 months ago and it detected additional allergies to soy, milk. A couple of months ago he started having chest pains and trouble swallowing his dinner and threw up. His pediatrician diagnosed him with GERD and put him on Omeprazole. When his symptoms wouldn’t go away we took him to a GI and then an endoscopy confirmed EoE. It has been so hard trying to help him and not knowing if the food I give him will bother him. So now in addition to all the things that he tested positive on allergy tests and he feels bother him like fruits and potatoes we also eliminated the 6 EoE groups. Today it dawned on me that corn might be bothering him too bcs he has been eating pop corn and corn chips the last few days and his symptoms of belly aches and headaches are more than usual…aaah it’s hard
Hugs and love to you, hope your days and nights are better and know that you are not alone.🤗
I'm in tears..I hope I can find a solution for my condition
Hope your condition has been better. I have the same issues with upper narrowed esophagus. I have gotten better with my elimination diet. Basically all salmon, little more on the runny side of mashed potatoes, egg whites, and rice. It's boring but it beats not being able to eat at all and feeling miserable all the time. Though I hope you are getting better its comforting to have someone that relates and I appreciate you sharing your story. The section starting at 8:40 hit home for me. I have gone days without eating before because i'm either not wanting to deal with the struggle or how long it takes to eat things that are not basically liquid. Reach out if you need someone to talk to, maybe share what has helped me over these last 7 years. Stay strong brother.
My niece got diagnosed at 12yo and she is still in the initial stages of trying the elimination diet. So, we're all learning how difficult and frustrating it is trying to come up with meals. She is such a trooper, because she has siblings who can still eat anything else, so she has to be extra careful and diligent. I also know she struggles with the emotional side of it. Your videos may be very helpful since she is going to have to figure out "life with EoE". Thank you.
My niece is going through the same thing.. 🙏🏾🙏🏾🙏🏾 for all who deals with this.
Aloha and thank you for sharing your story with us all. I am so sorry you are going through all of this. I just started going through these symptoms. I have an appointment to see a ear, nose, & throat specialist. I am praying for some answers. I have already seen an allergist. She has ordered labs and I will get results soon. Going through all of this, we always thing we are going through it all alone 😔 I feel some comfort that I am not going through this by my self. I will keep you in my prayers that you will find comfort and will recover from this soon. Try to have A Great Aloha Day!
I am with you my brother. I share the same struggle. Thank you for this video. It really touched me. It showed me that someone out there experiences the exact same thing I do and feels the same way. God bless you.
Just had my endoscope done yesterday and the results point to EOE. Of course I have to wait for biopsy results to come back to determine this 100%. But they’re 99% sure I have EOE. I’d choke on foods or sometimes pills. It’s so damn annoying. I can’t enjoy foods I love. So, if the doctors confirm this then I’ll have to figure out what the hell I can and can’t eat. Whoever heard of an allergy so bad that it messes with our esophagus like this?! It’s madly annoying folks. Can’t drink alcohol, enjoy tobacco, etc. which I guess is a good thing if you look at the bright side.
Hi I have EOE. Look up and try bovine colostrum Ld. the colostrum has made a huge difference in my life. All the best Jason
Jason can you contact me brentjaxon@gmail.com I'd like to ask you about this.
Jason how are you now? Plzzz tell me.
Hi. I also would like to know
Hi, Jason. What differences had it made in your life?
Sending so much compassion. My 7 year old just got diagnosed. Some of her symptoms are what I see here, but also at night, she wakes up in a panic feeling like she needs to throw up, then distressed all night. Much better during the day (except for coughing with meals). Anyone else have the nighttime nausea?
My niece don’t wanna eat sometimes she so scared she is gonna throw up😢🙏🏾🙏🏾🙏🏾 to yall..
Was just diagnosis, thank you for sharing.
I was diagnosed with EoE yesterday. I’m 26. It’s a living hell. The pain is horrible. I’m so scared. I’m not even sure what steps to take or what to try or not to try...
thanks for making this video. randomly on youtube learning about eosinophils and came across this. it's a great reminder that we are all just trying to play this game of life with the hand we are dealt and you never know what someone is going through. you seem like a nice dude. haven't seen any of your other vids, but hope ended up not being allergic to blueberries or grapes. also, big ups for hans zimmer music !
p.s. you resemble conan o'brien :)
Thanks for posting this. We are currently in the diagnostics process with my 13 month old daughter. :(
Bless her heart, she’s so young! Mine didn’t start becoming evident until I was 9, but I am aware that there are babies with it. How is your daughter doing now?
Thank you for sharing. I was diagnosed with celiac disease 10 years ago. Then about 2 years ago I developed an issue with corn. And now I was diagnosed with eoe but have no idea what my trigger/s are yet. I have eliminated the top 6 allergens & have to admit my swallowing feels easier & less painful & my life long eczema has gone away b
This video really helped me, I’ve had EOE from the day I was first born every now and then when my class would have parties I would always be the one student who wouldn’t get up to get doughnuts and ice cream and each time during birthday parties one by one each student would get up and chose between vanilla and chocolate cupcakes, each time the teacher asking me what cupcakes do you want and I would have to explain, when the students heard they would all say “ I feel bad for you” and “ I wish you could eat this it’s so good” and each time I would hold my tears back the pain in my throat I would feel wanting to say please stop saying that but their just trying to be nice even though this is now the norm people telling me “ well I know someone who stubbed their toe or I once hot stung by a bee the so more usual people always ask me what is your condition but i already know that the will soon lose interest (-my last year of middle school)
I have this too, im 23 years old and currently its getting worse.
Hope you are getting better man! Stay strong brother
Just came across this video. I was first diagnosed with mine back in 2017.. Wasn't really an issue when i was still in my early 20s.. now im in my late 20s and kept bad habits and being a young dumb adult. it's gotten worse and i believe it has related to tongue issues or other issues within that whole tract. Additionally im allergic to basically every single thing outside... It's rough and i just started to take the diet more serious.. It really scares me that i may need to go to different extremes to figure out what may help and trial and errors. Even more so been making extreme life changes surrounding that which has been a huge stress load.. Watching this video has helped me mentally as dealing with it alone is taxing on mental,physical and financial. Thank you. Hope you're doing well.
This morning, I read about esophagitis related to allergies. Most of the items you listing, I recently ate. Very interesting. I slept a couple of hours. I’ve been up about three hours. I’m an early school teacher. I hope you get better. I won’t be eating fries or bananas any time soon.
My son is being diagnosed. Thanks for a very informative video. Sorry for your difficult diagnosis. Hugs.
Thank you for this video! I’m so sorry for your suffering. My son was just diagnosed with EOE about 2 1/2 hours ago. His lung function test was 91 out of 100 with 100 being the worst it could be. He has a lot of food allergies (when he was little there were only 5 foods that he could eat) and he’s had trouble with food getting caught in his throat and choking since then and he’s 36 now. This was the first doctor of any kind who has mentioned EOE. I also have problems but have not seen a dr about it. Food and pills get stuck in my throat and it’s absolutely terrifying! I often get food (usually nuts or small pills) stuck and I can feel where it’s sitting and an hour or two later I cough and it comes out. I also have Behcet’s Disease so most of the food I eat is either smoothies, food made in the crockpot or green or red powdered drinks. I can’t drink much of them because I have nickel and cobalt allergies and most healthy fruits and veggies are high in cobalt and nickel. Everyone has to eat but life is a challenge when you never know what could kill you. Btw, my son has been in the ER 10 times with anaphylactic shock. Take care and I wish you well. Your video was a big help. ❤️
My husband is 34 and goes through the exact same thing. He discovered most of the foods he reacts to and when he reacts his throat instantly closes and he can’t breathe. I’m so sorry you guys go through this too :(
Thanks for the video! I just got diagnosed last week
My structure is high up too! When I'm choking- it's terrifying!
My son has EoE. He is 15 now, diagnosed 3 years ago. We did diet and we know he is either allergic to either of these foods: milk, wheat, soy, egg. The diet was successful but painful. After that we tried high dose Omeprazol that was recommended by the physician but it did not work, everything got worse. Now back to diet and this time to find out what he is allergic to.
Patching is better for finding the Eosinophilic white blood cell surge. But many can have cooked fruits and veg, not raw.. so we cook, then freeze for making a smoothie or sauces or deserts (and even salads with cooked then chilled carrots etc)… WHEW it’s a process!
Everyone - Thank you for all your comments. With me most of my triggers are foods that are healthy, like vegetables and fruit juice. Crazy huh? Nature's cruel joke. I've done 2 things. I'm on Fasenra now. A shot every other month, and it has eradicated my eosinophils. At the same time I stopped eating foods I believe are most likely to be triggers. I'm not "cured" of course, but I'm able to eat better now because there are not a bazillion eosinophil cells attacking my esophagus.
Hi Brent, glad you finding something that’s working, what was your eosinophil count generally? What veggies and fruits trigger for you now?
@@TheIcebon Eo count usually in hundreds. Zero after Fasenra. Carrots, celery citrus fruits. Various types bad.
Brent! So happy you found a medicine that is helping you!!! I am honestly delighted!
Brent, from your journey with EoE do you feel it’s better to do both the medicine and the strict diet at the same time? We just started with my son. I mentioned in my other comment that he is 11 and just diagnosed. He is on swallowed Flovent but we also eliminated the 6 EoE foods (some of them showed positive on allergy test). But I wonder how will we find out what foods bother him if he is on medicine? Doesn’t the medicine curb the symptoms? His GI said it was our choice to choose either the diet or the medicine or both…It’s so frustrating not to have doctors who are EoE specialists.
Hi Dina! Great to hear from you. Yea it's frustrating to not know 1 thing to do to help with EoE. I think with your son it comes down to how many possible allergy / triggers he could have. Allergy tests won't tell you much on that, but if he is allergic to a lot, he could have many triggers (I know I do, and I'm allergic to a ton).
I would say if his symptoms are severe and it's really hurting him to have them, then let the Flovent (if it helps) do its trick to help him feel better. But Flovent is meant to be temporary fix until you can get it under control and start to figure out longer term diet. So maybe take it a step at a time. If you have a good idea of his possible allergy triggers, if your doc says it's ok (once his symptoms decline) to go off Flovent and drop suspected foods, you can see if it helps. In my experience, if he's got severe triggers and is continuing to eat them, Flovent will not make the symptoms go away. It might help, but won't be a fix. Do whatever gets him to be comfortable, then try something to identify the root cause. Then if it gets worse, go back to what helps, until you can figure it out. Not easy!
Thank you for this video. I know it's hard and I'm sorry. I've been diagnosed for 11 years or so and am having lots of issues all of the sudden
All of the sudden for me too.
Yes me too. I was just recently diagnosed and otherwise I'm a healthy happy person who loves to eat healthy foods so its been frustrating. I did some research and thought it might be high histamine foods which a previous comment from Aaron supports. He said foods like bananas, tomatoes, avocados, and spinach were causing his issues and after eliminating them it went away. Hoping this helps ladies as I am just starting my journey on the path to wellness myself. Dionne Shaw please don't hesitate to respond if you have any progress or tips. Thank you and be well!
Currently waiting to biopsy again. Allergist suspects EoE but he said i have no food allergies. Every blood test i’ve gotten done has shown Milk, Wheat & Eggs as high level allergies after years of reacting & dealing with stricture issues. Not sure why allergist says I have none. Love reading everyone’s stories on here, makes you feel so much less alone!
dont know if you figured it out but research shows dairy and wheat are the 2 most common triggers for EoE in the majority of people with the disease. so theres a good chance you would see improvement by cutting them out.
Try eliminating sugar. I know that really sucks. But sugar causes inflammation. I’ve been on the elimination diet (top 6 plus no sugar) for 4 weeks now. I had my esophagus stretched with my last endoscopy. I feel much better. I can eat without taking a drink after every bite. We have to do a lot of research and see what works for us. It’s different for everyone. I’ve had EOE for around 7 years. It’s gotten worse over time because it was undiagnosed, Dr. said it was GERD. I don’t want to take meds, so I really need to find all my triggers. Getting creative with recipes helps. 👍
Is aloe Vera water okay ik it has a lot of sugar but it helps a lot?
@@johnvarnell8001 I still drink juice with natural sugars. I think the aloe juice would be fine, Especially if you feel it’s helping. It’s good for so many things. I’m mostly talking about refined sugar products and adding sugar to things. That’s just my opinion and journey. 👍🙏🏻 Good luck!
Thank you for this video.
Thank you for you insights and honesty. At 57, I have had these symptoms since a teenager - how have we survived? About to do my first eoe steroid treatment.
Same ive been choking since a child and struggling to keep weight up. I got an EGD at 31 and and GI said I hav EOE. Now i need to see what I can eat.
Finally someone like me
I had the same thing happen to me for years I definitely feel you... I used to have a lot of bad acid reflux. If I eat a lot of dry food it always gets stuck meats always get stuck chicken steak pork.... One time I ate a couple Snickers candy bars ... I had a crazy chest pain almost feel like my heart was getting ready to come out my chest. I changed my eating habits.. I stopped eating all meat even fish for a long time for like about 2 years... I didn't eat eggs, I would eat things that had eggs in them but didn't bother me for some odd reason. A lot more vegetables rice dishes with soup.. it really changed my anatomy in a way where the acid reflux went away nothing got stuck in my throat. When I went back to eating meat chicken beef or pork it would get stuck. I recently had to go to the ER to get some food meat out of my throat. I understand it some people just don't understand it keep your head up my friend.
I'm sorry that u have to deal with this. My son has this and he is suffering as well. Even with meds
i need to start having this breakfast routine..
Thanks for the video... I also have EOE
Man this makes me want to cry… it’s been a few years now with this.. I’m having trouble coping. I’ve had good days but also some really bad ones. I need support and no one knows what to do or say
Just got diagnosed with this, the worst pain and the struggle is insane :(
Also try the castor oil pack. Pray and ask God for help. He is able.
Ever try or heard of the carnivore diet? I know swallowing is a problem. But you did mention eating slowly to get things down. I'm allergic to all of it and found carnivore has prevented me from losing more weight and lessening the pains I get in my chest. Idk might be worth a try man. Good luck and good job putting this out.
How are you going with EoE and carnivore?
Thanks for sharing your experience. I was diagnosed with EoE about 2 years ago. At the time I would throw up everything I tried eating or drinking, including water. After trying PPI’s and a few other things, I ended up taking prednisone for a few days and got me to the point where I could manage my symptoms for the most part. I still have occasional bad days where I also experience dysphasia. I did hear that the FDA might be approving a Budesonide oral suspension on June 15th by a company called Takeda. Hoping to try that if it’s FDA approved. I hope everyone dealing with EoE doesn’t loose hope. Hang in there!
Pepcid complete seems to work for me but I will try to find my allergens but it means I have to throw away a lot of my food that I just bought yesterday.
May u be strong I understand my dad has same problem he is 83
I'm 31 and was in the hospital for aspiration pneumonia and founded out that I had this issue. My GI doctor is going to run some test.
I have found that I can only eat one meal a day 10 to 12 hrs before I go to bed, that seems to help me a lot. I once almost drowned drinking water to wash done a pill. I had to lean forward to let the water drain out so I could breathe.
Your thoughtfulness and thoroughness contributed to speeding up my healing process. I wonder what could have become of me if you weren’t the one who handled my case. Thank you so much for eradicating my HSV2 Dr Ikpoko on TH-cam
Had an endoscopy today and currently suffering through an EOE attack. It's been 2 hours of non-stop pain and it even hurts to swallow water. I hope I can get to sleep soon so I can work tomorrow ;(
Thank you for sharing, my 9 year old son was just diagnosed with this. He has so much trouble eating and gets so much anxiety when has to eat. Trying to figure out stuff he can get down easily.
I am sorry for your son, my son is same. His symptoms started 5 years ago. I did not know what it was. Last year he started choking while eating. He had steroid solution swallowed about a month to reduce inflammation in his esophagus. We started strict diet, eliminating milk and wheat. I have been watching you tube videos to learn how to make bread from buckwheat. I have same disease but when it comes to your child it hits bad.
Thank you for the video.
How were you actually diagnosed was it a endoscopy? As well was one of your symptoms chest pain ? I have chronic chest pain and have been diagnosed with same condition.
Endoscopy with >15 eosinophils in the field and lack of response to PPIs is generally the terms of diagnosis. Chest pain can be from reflux. GERD and EoE can exist together or separately. Reflux can also be associated with EoE
How are you now? I know this was a year ago but I’m experiencing the same thing
Thank you this is me. The simplest of foods get stuck and I don't know why
I know, right? I can’t even eat a grilled cheese, no matter how much I want to.
@@addisonavery9204 that was me last night with cheese from pizza and last week it was spaghetti.
I have a 2 year old daughter with eosinophil and is really hard watching her eating what she can eat with her restricted diet....thank you for this video
Is she doing better now? My daughter is 3 and she was diagnosed when she was 2, literally just trying to figure this out
@@theduchess1197 no she actually is not we are back to square one she got worse and we have more testing to do now
@@Ludandcarolina the doctor currently has my daughter on buedesonide (steroids) it comes in little vials that we mix with syrup, honey, etc .. she just started it about a week ago. I’m praying it helps her, we give it to her 2x per day. Have you guys ever tried it?
@@theduchess1197 no we tried a liquid medicine but not that am in the process of trying to figure out what to do but i do really hope it works for your daughter
I have EOE and So much fear when a work has a party or a lunch event , at home I got so frustrated with food getting stuck I used a shop vac to remove the blockage, and all the doctors can offer is antacids, it’s a nightmare
I have eliminated all meat. Sometimes a little have it bacon but certain brands (smoked) is a no. It's weird i had 15 food allergies and have gotten better to where I can tolerate milk after 7 years and a little bit of eggs but now no meat at all I finally just started doctoring myself with allergy testing because of hi insurance and high deductibles and I just started realizing if it bothers me in the least I'm not eating it it's just that easy it's your body rejecting it. I seen on another one of these sites somebody said social eating is one of the worst aspects of it and I totally agree you just can't eat out socially it's hard enough eating that's have people staring at you. I often look at people having a nice time eating and nobody has any idea how much a challenge it is just to eat a meal. I used to cook all these wonderful foods and eat all these wonderful meals and now everything's just boring but things could be worse and I don't have it near as bad has most people as just a different lifestyle change that you've just got to accept. Thanks to Monsanto we are all having this brand-new lovely disease. Tons of chemicals in our food. isn't it a little strange that soy is in all of our food but yet you can't go buy soy to cook with and you can't go put a stick of soy in your baked goods so why do they give it to us in large doses. Eating becomes like groundhog day the same thing over and over again. I think I'm on a diet of yogurt special k cereal with strawberries a few salads but for the most part have to eat those really slow they kind of bother me. Most everything else I would eat would be very slow sometimes just not worth finishing when everybody else is done.
Also my daughter is starting to get this and she had a specialist tell her to take a simple Zantac. That had helped cut way down on her reaction. I want to try to start this see if it works since I don't take any drugs at all and never have this will be a challenge but worth a try.
I feel your pain. I as well have eoe and it is a huge pain in the tail. I can only eat a few things basically meat and potatoes and when it flares up I can hardly even get tomato soup down. I completely agree with you that it is companies like Monsanto with all that GMO garbage
Your comment speaks the truth. I'm sick of all these toxins in our food that's giving us all these problems!
😣 you are literally describing my pain
I don't take drugs at all. I can tell you it won't fix it and most doctors don't understand you have to go to a big city specialist that deals with esinophlic. esophagitis.
im sure they already told you but in the majority of people, like 70% of adults, milk and dairy is one of the worst triggers. it takes a long time to heal btw but this video is 5 years old so im sure you figured that out. it took me almost a year before i could eat and swallow normally after cutting out the worst foods
I must know your outcome, trying not to be depressed and hopeful about the outlook of this illness. Really want to know what treatments you’re currently getting and your current condition. Thanks
Hi Shawn - Hang in there. You're on a mission to find "status quo" where you can have some semblance of normal life. It takes time and experimenting with treatments. For me, I've been in a good place ever since I started Fasenra shots. Eating somewhat normally (for me) and haven't had to be dilated in over 2 years. Which is amazing. Find a good gastro that has experience in EoE and keep trying solutions until something helps.
I’ve been diagnosed since jan this year. It’s been weird, the flare ups that come in and I haven’t had any problems swallowing yet. I’ve been given a course of budesonide orodispersible tablets specifically for EOE for 8 weeks as there’s really strong evidence for it. Hopefully it makes a difference
Hey im on the same treatment! Any luck or update?
@@randysingh3937 after the 8 week treatment I went into remission. But it lasted for about 2 months. With proton pump inhibitors it helped massively, but now I get huge constipation with it. So I control the EoE with diet. I have the weird throat feeling which is regular, and tend to use antacids after meals. Sucks to have this but it could be a lot worse I suppose!
Ive been dealing with the exact same problems over the last 5 years or so. The best way ive found to live with this disease is to eat nothing dry, nothing hard and crunchy. All my meals are soft and wet. Breakfast is usually scrambled eggs or a protein shake of some sort, softened rice cereal. Lunch and dinner is usually chuck roast or chicken thighs that were cooked for 8-10 hours in a crock pot with veggies to soften everything up. Its a struggle man, theres been days where i didnt eat anything b/c i felt so much pain. So many sleepless nights where i couldnt lay down without choking. Its a terrible thing, but life is possible if you live with it and make sure you have soft foods prepared. Hang in there man. Its our only option
How are you doing these days?
@@jaredkurimski3010 doing well. Everyday is a healing journey. Finding out what works and what doesn't. I'm having some good luck with carnivore diet using the sous vide to really make steaks soft, and cooking hamburger in the crock pot to make it really tender. Its helping to reduce inflammation which i've found is a huge part of getting food down. Thank you for asking 👍👍
Glad to hear! Have you done any motility tests in the past five years by chance?
@@jaredkurimski3010 TY, and yes I had a manometry test done 3 years ago (worst test ive ever done in my life). It showed 100% failed swallows, and very low motility.
@@blakelandis2434 I think I’m in the same boat, did it happen all at once with one event causing those issues, or over time?
I was just diagnosed last week. I'm scared of what the future looks like for me. My allergy test is Friday so we'll see what that says.
ive also read theories that a lot of vegetables are triggers because of the pesticides they use. if you can stomach the pain, try testing foods you are allergic to but switching to the organic version before your scope to see if it still triggers. one lady i saw on here even had an allergy to pork. this disease sucks!
Apples have a milk wax. That is why you react to the skin and assume a dairy or dairy protein allergy. 😊
Have you considered starting Dupixant?
By the way your skin looks amazing :) weird thing to say but it truly does
Was just diagnosed with EOE. Stricture is below from Bypass Surgery. Thanks
Do an MRT blood test to detect food allergies it tests over 150 foods and spices.
I have been struggling to swallow for years - coughing constantly when trying to eat. I have auto-immune disease; born with eczema, asthma as a child, rheumatoid arthritis at age 40, and then Sjogrens 5 years ago. No-one seems to mention Sjogrens - when your immune system attacks your moisture glands. That's when swallowing became almost impossible, because of my dry mouth and throat. I am constantly hungry but cannot seem to get enough nutrition in my body. I am fairly tall & lost a lot of weight. After 4 endoscopies/gastroscopy biopsies negative for cancer. I cannot live like this. It is torture.
My child is 5 years old and was diagnosed in the fourth month of his life. We are suffering greatly, especially after he entered kindergarten, Since his height differs from his colleagues and he seems weak, he does not eat like them. I do not know how to silence the world from evaluating his height and size. I do not know how to make him realize that he is different. I do not know how to make him relieve him of😢 eczema and nausea.
the worst part of this disease is it takes forever to figure out what the triggers are. you literally need to get an endoscopy after adding every single food into your diet. its a huge pain. did you end up making progress in getting the esophagus inflammation to go back to normal after cutting out your triggers?
my daughter has lymphocytes, eosinophils, and neutrophils. it's hard for me ,what food to prepare for her because I don't have enough money. I felt nervous for her . This is my 1st time that she cannot breathe and I don't know what to do.
Im going through the same thing its so scary to swollow food and pills.
Got diagnosed when I was 7 I’m 16 now went to get a endoscopy yesterday said I had a ulcer at the bottom and something about more rings in my throat but everything like wheat and stuff that mostly triggers it I eat don’t eat no fruits vegetables meat just chips pancakes peanut butter cereal mostly junk food but the way it looks they said I was supposed to be in high pain but I don’t feel anything rarely get choked to except I did on a gummy bear 1 time guess I’m just lucky
Have you ever had an allergy to something that did not show up on the tests? I have EoE as well and I have reactions and my white blood cell count showed it and there was inflammation but the allergies weren’t showing on the biopsy. I have reactions to wheat dairy eggs and nuts but only the wheat shows.
It’s affecting my stomach more than anything. Serious cramps and nausea. Ended up vomiting. It’s called EOE enteritis. Anyone else have this and do you have any tips to help me?
The hardest part about eoe for my son is he is severly autistic and dosent talk. He wakes up and runs to eat . Hours later is screaming . Some days he isnt screaming . Its so confusing. Today hes on day 5 of his chest rising up and down hard while he screams. The hospital just sedates him when hes freaking out . Im waiting to see doctors at CHOP i need help for him 😢
Great video! People need to avoid processed garbage. EoE is only in North America with all our GMOs, chemicals and fake processed foods. I can’t eat gluten here (Canada) but I’m fine in Europe. Crazy!
Funny I went to Italy and had no problem with most of the dairy there. Here is terrible!
@@eosinophilicesophagitisgur953 it’s absolutely crazy. We keep letting these fake foods flood the market with no labels or warnings. I work with one of the top autism doctors in the world as well and people ignore what she says about food too. It’s too big of a business.
True!! I know how it is. And from three meals ... I get almost with nothing at the end of the day.. And loosing kg and looking and feeling non-sexy and always tired... I know. :* i CAN eat only milk-ish things, also smoothies -but with lots of nothing :)) - and ...my soup? you don't wanna know :)) boiled chicken and some mushrooms -both then into a blender. So.. I get you! I don't know how you are now... :) Hope you are ok.. or at least trying to be.
How are you doing, Simona? Have you made any new discoveries?
How are you now? Did you get any medication, did it help?
It feels really weird to be undiagnosed but have highly suspicious symptoms
Do you know if there are any foods that are always without allergens? I heard that rice is supposed to be non allergic, i guess redmeat as well if one doesnt have that tick disease.
Thanks for sharing your story...I was diagnosed a few months ago and it comes and goes really...Was tested for allergies and no foods popped up but dust mites and grasses did. Not real sure what to do now...
I got tested for allergies and the results came back the same as yours. But I notice that raw vegetables affect me and also chewing your food very well helps too but I hope you’re doing well
So frustrated with EOE! My Son is 11 yrs old and has EOE. On top of it non-verbal, & Autistic. I wish he could tell me how he feels. Only way I know he's having a hard time is not eating. He's had 5 endoscopy. We did the Dupixent injection for a couple years now. It helped so so much, he finally wanted to eat textures, what a miracle. Now the Dupixent shot isn't working as well, I smell acid when he and lately he's refusing food again. I thought Dupixent was going to get rid of it. Now we're working on increasing his dosage. It's a tough thing.
Thank you!! Do you have a Life Vac?? If not, please check it out as it is super effective suction device. I just got diagnosed. You really helped me today.
Hi, Teresa. What is a Life Vac for?
@@dionneshaw9127 It's a choking aid. You can read about it at lifevac.net . I know nothing about it myself, I'm just here because my nephew was just diagnosed.