Eosinophilic Esophagitis (EoE) | My Story Part 1|
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- čas přidán 24. 06. 2020
- Hey Everyone, here's a little video sharing my experience with EoE. If you don't know what EoE is, its an auto immune disease that for me has caused me to have a very difficult time swallowing food and also getting food stuck in my throat. I have choked many times on food and it has honestly created such a fear and anxiety around choking on food. So EoE is when these white blood cells called Eosinophils build up in the esophagus and attack itself. These rings all along your esophagus start to form basically looking like a bunch of hills along your throat. This obviously making it super hard to swallow food.
Stay tuned for more videos and the next parts of this series that finish bits of my story.
If you have any questions comment down below and I'll try to answer them as best as I can!
IG/TikTok/Facebook: @LukeJohannesson
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I thought GERD was bad 😞, this is horrible. I struggle with my condition every day but i feel for you guys with this .❤
They all suck haha.
Thanks for sharing genres really not enough info out about this. People sharing really is what I mean I am thinking about making my own blog to help others and just share my life
That would be a great idea! When I had it years ago there was basically nothing useful I found! I would have been lost if it wasn’t for my wife
My god I've just found your channel every thing your gone through is mirror image to mine! I've had this about 6 years now and it's absolutely terrifying when some food gets stuck in the throat! It seems to be getting better lately. And think iam allergic to gluten.
How has everything been going for you now?
This has helped me greatly, I suffer from autoimmune and now on a special diet and it is getting better. They said it will never go away, but you can manage it. Thank you
My doctor has said you can grow out of it but it’s also person to person so not for everyone obviously. Hope yours goes away!
@LKGJO you don't grow out of it. It is a disease. It has to be changed by the foods you are eating, sometimes. It runs in your cells, and it can be helped, but it takes time. Does not grow away from you. You need to correct it, not the doctor. He can assist you!but that is it your responsibility, you need not be afraid . But you can get.infornation on it now. Just give your symptoms to your doctor, preferably an immunologist, they are better for this type of problem! Good luck
@@LKGJO Thankyou you are very kind.
My husband was diagnosed a couple years ago…his natural dr has taken food allergy test and he has eliminated all the foods he is allergic to and takes organic beef liver, vit D and K supplements, and aloe vera juice mixed with albizia liquid and betaine before every meal. His inflammation is under control and doesn’t have an issue swallowing when he follows his diet and supplements:)
That’s awesome to hear! Thanks for sharing. I think a lot of people, including myself, need to focus a lot on reducing inflammation in the body. Well done!
Excellant feel better. Keep vigilant
I’m going through exactly what you’re saying . I’ve never choked , had the stuck in chest feeling twice and both times , where after eating pizza and going straight to bed . I’m lost because I’m so new to this …..I was told last week that I have eoe
Hey Mike- definitely not fun news at all. Sorry you went through all that. It can definitely be scary at the start without knowing too much. What worked for me was eliminating a lot of the allergens and then getting a baseline without any side effects. Then slowly introduce again. Let me know if you have any questions though and I’ll do my best!
@@LKGJO Did you get any nausea with this?
No never experienced that at all throughout this whole journey.
Nice to know it’s not just me going through this :/ .....I didn’t take it seriously and always forgot to take my medication here I am now having an episode and trying to figure out how to stop this ASAP....it’s uncomfortable as f...😔
Yeah man I totally understand. It’s definitely something to take serious because you don’t want strictures in your throat. That will lead to more problems. I mainly handle mine with PPIs and staying off dairy. Hopefully you figure it out!
I feel your pain. Feel alone. Also, feels like the pain never stops!
great video! do you know if you still need to take the ppis to manage your condition if its mostly due to food allergies? ive taking PPIs myself but dont want to be on it long-term, have you tried stopping your PPIs or is it something you just take every day always?
Super good comment/question. So I actually did a 2 month stint to test no PPIs and also like 95% off dairy. EoE came back. So I need to be on the PPIs for only hopefully 2 years while staying off dairy mostly. I did this before and EoE went away. My doctor told me that he suspects I will grow out of this being younger (under 30 etc). I don’t want to take PPIs for long term either and there shouldn’t be any side effects for a 2 year use.
@@LKGJO great answer! thank you so much for getting back to me! do you think that maybe the eoe came back because of the dairy and not because you stopped the PPI? (you said you tested only 95% off dairy and im assuming before that you were 100%) btw i was wondering when your eoe comes back do you notice any other symptoms other than food getting stuck? like for me my throat would feel sore and i would feel the need to belch more, i was wondering if thats just me or if you felt the same?
@@waseemWaseem-sm9mi I actually tested to be off fairly and PPI’s for about 2 months. The EoE came back slightly. It wasn’t very bad but would not be good if I left it for good, then the symptoms would creep back up and it would start to damage my esophagus. I am currently staying off dairy for the most part (cheat for rare occasions) and take PPI daily. Ill be getting testing again in maybe a year to see the results. I honestly don’t feel any symptoms after eliminating dairy and taking the PPI.
@@waseemWaseem-sm9mi I’m going through exactly what you’re saying . I’ve never choked , had the stuck in chest feeling twice and both times , where after eating pizza and going straight to bed . I’m lost because I’m so new to this …..
@@mikemakke9821 get allergy tests done like luke did, i did the same, work out what youre allergic to and try to minimise it. things get better! :)
Thanks for sharing this video, Luke. Really appreciate it! My brother has EOE and it's been extremely challenging. If anyone is willing to share, I have two questions:
1. Understanding that everyone reacts differently, what's your general thoughts about PPIs?
2. Has anyone here experienced intense nausea? If so, did you find ways to mitigate this?
My technically went into remission on PPIs alone, but his symptoms have continued to worsen. Though his swallowing is a bit better, the main thing now is that he gets nauseous after nearly every meal (big or small). He is CONSTANTLY nauseous, which has affected his professional/personal life tremendously. We're desperate for answers/ideas.
I honestly have been trying to get off PPIs because there can be some health risks and actually make your gut health worsen. My wife is releasing her guide soon on EoE but has also been making me a special smoothie to help with gut health so I don’t need to be on them. I never experienced nausea though but I will definitely bring this up to my wife who is designing the guides and plans. Stay tuned!
@@LKGJO Thanks Luke! A guide sounds great! I'm so glad you shared this video. It definitely helps to tackle these things collectively.
If you're ever interested I'll link it here: www.chelcceleste.com/webinar-registration
Sorry for the super late reply, I just posted an update about my on this page.
Yeah this cropped up in my ~10 years ago out of nowhere. Food good stuck at a work lunch, bad time all around. I also had some GERD issues which compounded this. I've cut back on dairy and it has helped a ton. Endoscopies still show a high EoE count and rings; however, food swallowing issues are almost entirely gone now. I've also gotten to the point that if food gets stuck, I can actually relax and get it to go down..... (hard to explain, buuuuut)
They put me on PPIs to see if EoE count would go down, but it did not help. Currently looking at getting Jorveza (orodispersible budesonide) to see if that actually clears up counts/rings.
P.S. Yes, dairy seems to cause me a lot of issues as well, which sucks. LOVE ice cream! :( 100% correct that it isn't lactose, it is an animal protein found in the dairy.
Sucks that PPIs aren't working! I hope you figure things out. Cutting dairy was the worst haha. I absolutely love ice cream and cheese. When you really look, almost everything has dairy in it too :'(
Dairy *IS* everywhere! I cut back as much as I can and it does help, though. I'm not 100% 'cured' but my swallowing issues are 95% better. I can literally go months w/o any issues, though when endoscopy is done, they still see EoE ...
@@LKGJO
I remember when I was testing and getting scopes. I had to be SUPER strict on my diet. But now I’ve been off it I don’t have EoE anymore according to my eosinophil counts. Hopefully your scope goes well!
I’m 13 years old and a month ago I was eating pizza and my parents thought I was having an allergic reaction, I couldn’t swallow and the only way to get my saliva down was with water. I went to the ER immediately and they gave me two epi pens! Up until a few days ago I was avoiding all the common allergy foods, I got allergy tested (Blood and Skin testing) They came back negative for everything they tested me for... I still have trouble swallowing and I have to get a biopsy soon... my allergist thinks it’s EOE! Every time I eat I feel like I can’t swallow...
Hey Sophie, shoot that doesn’t sound like a fun story at all. I’ve definitely been there. It’s not an easy process to eliminate all the foods but a super good way to truly find out. It’s been over a year of testing to see which foods I truly ready to. And if you do choose to eliminate. You need to be super strict. It’s not easy but trust me when I say worth it in the end. Good luck Sophie!
I had that with my thyroid , a lot of it is anxiety and food. Quite a few of us in the family have it , we all had tests for it, is anxiety mostly no other bad problems , we.were fine
It sucks, it's chronic, best advice is to find the foods/allergens that cause it and avoid it longterm.
Definitely agree! Medication seems to mask symptoms a bit only
I started having symptoms in 2011 when I was 30, started off as food getting "stuck" in my throat but I could get it down by drinking water at first.. after a few years I had the worst choking situation which was very scary, I called 911 they didn't know what to do soni eventually just made myself regurgitate the food, it took several times and very scary again having saliva/mucus build up in my throat and the only way to get it out is by making myself regurgitate it.. I got diagnosed with Eoe, took the scratch allergy test but nothing showed up as an allergy for me (which now I'm finding out is normal for it not to show up on those tests) now here I am just had a bad episode and am at the point where I am going to completely eliminate 6 foods on the elimination diet and integrate some natural ant-acid remedies like acv.. hopefully I start to notice a change and can share more of my experience to hopefully help others. Hope you're finding relief! 🙏
I 100% had the same experience many times. It’s beyond scary and probably one of my biggest fears now. The 6 food is the best I think. Then you can really find out what exactly is causing the problem. I’d really try to eliminate dairy too and see because it’s such a huge cause for inflammation. I did anti acid stuff and it worked. I’m now testing to see if just staying off dairy is good and doesn’t cause Eosinophils to build up. I’ve felt super good and notice my stomach goes crazy when I have dairy so it should work! Best of luck!
@@LKGJO I've just started having these symptoms about 2 weeks now. When I first noticed it, it was really just a tiny bit of discomfort swallowing food. But day by day it became harder and harder. I felt as if food was getting "stuck" halfway down my esophagus like in the middle of my chest. I had to take huge gulps of water wo wash it down. It lasted for 7 agonizing days. Then all of a sudden BAM it just kinda went away. I was good for like 5 days. Well within the "good" 5 days I seen a GI doctor and told him exactly what I have told you to this point. He said "It was probably a pill induced ulcer." Then literally the DAY AFTER I seen him it all of a sudden just came back! Its been bad again for about 4 days now. I have lost so much weight because all I can really eat is Yogurt and Oatmeal and Bananas. I just dont feel "well" at all but I assume a lot of it is because I am not eating near as much as I should. Did you have all these symptoms? I am set up with a scope to be done on August 3rd which is in about 28 days. I dont feel like I can wait this long. I dont really have a problem with my food "comming back up" once its down. Its just severely hard to swallow. Feels like it gets stuck and its on "fire" no matter what I eat or how little of bites or how much I chew.
I have had the exact same symptoms the last three years. I have my first scope tomorrow and I'm so scared. I have been off wheat for 14 years, super low diary for 10 years, very low eggs. The last 10 days I've been 100% vegan but still choking. Can't eat quinoa, brown rice, apples, carrots, bread. It's so depressing that my symptoms are so bad when my diet is so clean
@@nzrabbit77 I'm so sorry you're going thru this!!
@@nzrabbit77 I’m so sorry you’ve been going through that! Have you ever tried to do a full elimination diet and see if that helps? I would honestly recommend that even if it may suck for a while. Try it would for like 1-2 months to get a clean slate to base results from. If you don’t have any improvements after eliminating everything then maybe its a stomach acid problem? I have to eliminate dairy as well as take PPIs or EoE comes back (very slowly). Then after that maybe start to introduce foods and see if they effect you. Good luck!
I was just diagnosed with EOE, my inflammation is at the bottom of my esophagus where it meets the stomach, I have some trouble swallowing sometimes for sure, feels like I’m gonna choke, but like you it was gradual. but my biggest symptom is immense pressure in the upper stomach, hard to breathe, and walk. I took a food sensitivity test and I’m sensitive to all dairy, amongst other things, I’m gonna get a blood and skin test too to find a direct culprit. Anyone else use Flovent?
Sorry to hear! Eliminating dairy becomes much easier over time when you figure it out. Lots of alternatives out there now. For me I’ve found stomach acid is a big culprit on the lower part. Good luck!
Ive just been diagnosed after a year of being stabbed and jabbed by drs and changed onto my 3rd Dr here in Australia. Because they didnt know what was going on.. i was at the stage where i was getting bloods done daily... i lost 63 kilos and.. and they kept telling me it was my anxiety attacks and dysphagia..at this point i literally turned off all foods an lived off ",sustagen & Up&Gos" i turned off food for the whole year no joke.. and when i wqs attempting... i was literally chewing an sucking the flavours out of everything but never swallowed anything bevause the unknown fear
Im going in for DILATION ON THE 1ST DECEMBER ❤
That's a crazy experience! I'm so sorry it was so difficult. Hopefully you find a solution soon and get back to normal.
@LKGJO thank you
I'm going in for dilation on the 1st December im pretty anxious about the (am I going to die) part though. Any tips ?
@@ShutUpMeg__ I don't think you're going to die! Haha. I've never actually had a dilation so I'm not too sure. I would imagine they will sedate you though, similar to a scope. I would just remember that people do this all the time so I would just try and think about how things will hopefully be better after the procedure :)
Are hives are apart of eoe? I have hives all the time and I've had it too times I've had to go to the ER with an anaphylactic reaction I had a scope and I said that my eosinophils were elevated but not enough for a complete diagnosis. My wind pipe also gets inflamed making it hard to breathe and I have asthma too on top of it. I wonder if this is eoe or if it's some food allergy I don't know I have.
I haven’t heard of hives with EoE but it’s also your body’s response to a foreign “food” or could be a lot of things. Hives are also your body fighting back at something hence why your airway swells up to stop anything else from getting in. I hope you figure it out though, I feel like there are a lot of things that may be going on but your body doesn’t seem to like a few things! Keep with it!
Real question, can you ever become pain free? Also, thank you for making this video. I was just recently diagnosed. I feel alone.
You definitely can! Takes some experimentation and time to figure it out. You’re not alone so don’t worry. You can definitely get better. I was firefighting when diagnosed so it made it really hard. I’m pretty much back to normal now. Stay tuned for a guide coming out soon.
@@LKGJO that’s a relief to hear! Thank you! I truly appreciate you sharing your story and being advocate for people suffering with EoE. I have been really struggling. I used to weigh 200bls. My weight this morning is 173bls. I don’t even recognize myself in the mirror. This has been really depressing, trying really hard not to let this disease get the best of me! It is really a relief to hear that there is light at the end of this tunnel. Again! Thank you! 🙏
I’m going to try to put some more videos out on this. There’s definitely hope though so stick with it. Follow my wife’s channel Chelsea Celeste Nutrition for content also if you’d like.
@@LKGJO awesome! Will do, again thanks for your time!
I just got diagnosed with eoe in February. They gave me a vial steroid to take. But I don’t have difficulty swallowing. But I do have a weird feeling in the chest that kind of tightens up, so I don’t know it it’s just GERD or food getting stuck. I haven’t done any elimination yet! That’s going to be so hard
I hope you figure it out! It sucks because it’s usually a longer journey with this type of thing to be accurate. I got used to the elimination diet but at the start it’s no fun haha. Good luck!
Have you tried Dupixent ?
Nope never heard of that one
Have this it sucks I cut dairy out at first don't do much for me it comes and goes for I take floticazon nexum and sometimes benadryl for flare ups have had 6 dilations in 15 year so not to bad maybe 10 days in Hospitals all together
That's a lot of dilations! Thankfully by doing the elimination diet properly for me helped me figure it all out. It was a long process but worked in the end. Dairy is a crappy thing to not have since it's in everything!
@LKGJO glad your feeling better man so much better for you in the long run if you can do it with diet change alone I really appreciate people who post there videos on CZcams like this back when I first started getting sick in early 2000s wasn't well know what it was or how to treat it
@@thebeermaker2102 It's crazy the lack of information out there. I felt hopeless when I first found out.
Did you ever make a Part 2?
Hey! Yeah I have 4 parts on my channel so far :)
Have you trjed Dupixent for it?
Nope I haven't heard of that before. I know they had a steroid puffer for me as well but I never used that
How are you now? I was doing good on budesodnid but now I don’t think it’s even working as good
I’ve been doing super well. Honestly the biggest change was diet because you really need to tackle the root cause of inflammation. Check out @ChelseaCelesteNutrition (my wife who has her Masters in Nutrition) She just launched an entire guide on EoE which is exactly how I got to where I am today. Hope this can help!
Did you get it after you started firefighting or before. Just wondering because I got this from toxic metalworking fumes. Maybe you got yours from toxic smoke inhallation.
It was after I started fire when I was paid on call but took full effect when I got hired on full time. Who knows though, I honestly think it’s all the junk in the food but again, no idea :/
@@LKGJO check your nose and throat to see if it feels different. that would be a sign that it was smoke. like if you are having more trouble breathing out your nose. it could be inflamed.
Haven’t noticed that before so I doubt it
Jorveza helps a lot but i find that it can cause bloating after prolonged use.
Never tried that one!
Does anyone find that reactions occur more often when you are feeling tense or stressed?
Stress is a killing and contributed to so many things so I wouldn’t be surprised!
I have eoe I cut out of dairy out I am now allergic to all nuts and pollen so it stinks and also I eat cream and cheese and pasta I can’t eat so now I’m going for my 3rd endoscopy cause last time I had one they couldn’t get to my stomach so they went to try again and see
Like I can be around nuts but I can’t eat them my throat closes up so now I’m getting allergy shots now
That sounds rough! I hope it works out for you!
Did anyone get that weird zap chest pain with it
Only pain was when I had an impaction.
Did you ever have reflux?
I don’t think so…although I take a PPI to help with stomach acid as well as eliminate dairy. I think that is definitely a contributor to EoE though.
Thank You for sharing everything You have been through
Do you think that reflux could be a main major to cause eoe
Carnivore diet has to be superb for you. .Not to mention for keeping a perfect physique.
Humans do not need carbohydrates fyi
KETOGENIC diet
Paleoketogenic diet, dr Szofia Clemens of Paleomedicina in Hungary
I definitely don’t stick true to one diet. We can survive on many types of diets but yes I agree we should probably stay away from grains or starchy carbs, but I still get carbs from veggies. My eating habits aren’t great right now though despite my wife actually having her masters in science and nutrition haha.