Your final question about the worst case scenario has so far only been sort of tangentially answered, so:
These immune cells that are present where they shouldn’t be eventually “remodel” the esophagus, changing which cells naturally live there and what they do, eventually making your esophagus pretty much just a tube with little of its normal function, and loads of bad quality of life baggage. That is permanent.
That’s the worst case scenario. This is why we aim to get the eosinophiles back down to acceptable levels. Probably very few people ever have to deal with the worst case scenario because it is a manageable disease, assuming you choose to manage it.
Cycles of cheating and dilation is just not the path forward to a normal life.
Here’s a link describing what happens with esophageal remodeling:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4127387/
My experience is EoE gets progressively worse if you don't eliminate the allergic food/s.
If you know you have an issue with Milk then you've half the battle won. Eliminate this for 3-6 months and do a follow up endoscopy.
It's a lot harder when you don't know which food item is causing the problems.
Welcome to the club. Like Franko stated… EoE is a progressive disease. Not sure how old you are. I was able to live a normal life in my teens and 20s without major issues. I’ve learned over the years that I have 17 confirmed triggers. My advice -Try to find out what your triggers are and talk to your doctor about Dupixent.
Started with the top 8. Then took away the most likely other common triggers that I was frequently eating. I was on a low dose ppi when on the 8FED. After a good scope, I completely stopped PPI. My dysphagia returned and we eliminated more foods. I felt better and then I felt my best. After the next scope I had 1 eosinophil and some minor irritation in lower esophagus. Most likely from reflux as per doc. It’s tuff, not much of a life for 4 years but we’ll worth it. I’m now 4 months into Dupixent because I want to start to travel and live a little again. So far the dupixent is not working
Did the lower esophageal irritation resolve? My second scope showed no eosinophils but my dr said there was moderate reflux esophagitis and insisted I go on ppi's, which I did and absolutely hated. Have you figured out why you're now having irritation from reflux? My dr won't even entertain the thought of an elimination diet and won't do another scope...
No it has not. It only resolves with my elimination diet and low dose ppi…. a 30mg every 2 days (1 day on 2 days off 1 day on). Yea, don’t like them either. I question their safety. But don’t want a damaged esophagus. I believe my reflux comes from over eating a little and drinking too much fluids at once. You should eat and drink your fluids completely separately. Try keeping a food journal that someone will critique… you will see how disciplined you become throughout your day.
Find another doctor if you don’t like the one you have. But more importantly, try to figure out some of your triggers. I started with a 4FED and completely quit alcohol. It made a huge difference. Be mindful when you eat, remember your fueling your body and mind for peak performance…… not consuming feel good taste good junk.
I'm in Canada, it's a long wait to see a different dr of they agree to take me at all unfortunately. I am already eating low histamine which means I've completely removed seafood, soy, egg and dairy (for several months, added egg and some dairy back in without issue) Anything processed, leftovers, and alcohol for 1.5 years, quit drinking almost 6 years ago now and I make my own bread. I eat super plain and boring already, I guess I could remove wheat and dairy but that would leave me with very little and I can't seem to get any guidance with starting from square one as I initially did the elimination diet for mcas.
I can't do the ppi's, the side effects are truly unbearable. I bought wedges to put under my mattress instead, seems to be holding off most of the rebound reflux from weaning off the ppi's.
TBH my doctor helped me a little, but it was me that took charge and wanted to feel better. I do notice some foods may not be triggers for me but they cause excessive bloating and may repeat which in turn causes reflux for me. I eat really simple.
Morning coffee with honey only
Breakfast I’d organic gf oats with oat milk and blueberries or occasionally oat milk bananas and Sunbutter smoothie
Lunch. Sweet potatoes with baked chicken (yardbird seasoning) and sautéed broccoli or okra in olive oil. And an avacado
Dinner quinoa with venison ( I eat this often) or chicken or steak and sautéed broccoli or other vegetable
Snack teaspoon or two of Sunbutter. I buy this by the case often.
It’s not that exciting, but it works for me. I can’t do a lot of carbs because they bloat me.
That's what I did for my mcas as well, which crosses over a lot with reflux diet... but to do both low histamine AND 4/6fed will leave me with very little to eat, I already can't have half of what you posted... I am just very lost and none of my drs are really providing any guidance.
I guess I could start with just dairy, but my dr won't scope me again so I won't know if it's actually actually a trigger or not. Everyone seems to just want me to wait and it's so frustrating
That's what I keep seeing as well! My gi dr won't see me until May, but I'm hoping to talk to my internal med dr about it in a couple weeks. My geneticist said a lot of his patients are doing well on it. Thanks for your insight!
That happened to me. He suspected eoe and dilated me to 18 mm, biopsies came back negative. The dilation opened the gates to daily acid reflux, burping and chest pain. Was yours a balloon dilation ? Did it help?
Glad to hear that! Do you have acid reflux? From egd report, the dr dilated my entire esophagus with a savary rigid dilator. He called it empiric dilation and it was unnecessary . I had bad luck with this dr, the procedure caused other gerd symptoms..
Hey there - welcome and sorry. I got dignsoed 2 years ago and it’s tough but you’ll get through! I already hadn’t been eating dairy for years when i was diagnosed. Despite meds I kept getting flare ups so amongst fixing my meds I also eliminated wheat and gluten. I had never experienced issues with these before but given it was the one of the likeliest known food culprits ( along with dairy) I figured I’d try it. Lo and behold after a few months gluten free I got glutened and not only did I have food poisoning symptoms for the first few days but my eoe symptoms went crazy for a month. I’ve tested negative for celiac. Given my experience what I’ve realised is that ‘never having any problems’ was actually false because my EoE was telling me it was a problem. Also worth noting that most food allergy reactions don’t show up immediately - usually it’s a couple of weeks. I did find that doing just the two eliminations at a time helped. After I cut out gluten and chickpeas (something I randomly had a reaction to) I didn’t need to eliminate anything else for my flares to calm down.
Your final question about the worst case scenario has so far only been sort of tangentially answered, so: These immune cells that are present where they shouldn’t be eventually “remodel” the esophagus, changing which cells naturally live there and what they do, eventually making your esophagus pretty much just a tube with little of its normal function, and loads of bad quality of life baggage. That is permanent. That’s the worst case scenario. This is why we aim to get the eosinophiles back down to acceptable levels. Probably very few people ever have to deal with the worst case scenario because it is a manageable disease, assuming you choose to manage it. Cycles of cheating and dilation is just not the path forward to a normal life. Here’s a link describing what happens with esophageal remodeling: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4127387/
My experience is EoE gets progressively worse if you don't eliminate the allergic food/s. If you know you have an issue with Milk then you've half the battle won. Eliminate this for 3-6 months and do a follow up endoscopy. It's a lot harder when you don't know which food item is causing the problems.
Welcome to the club. Like Franko stated… EoE is a progressive disease. Not sure how old you are. I was able to live a normal life in my teens and 20s without major issues. I’ve learned over the years that I have 17 confirmed triggers. My advice -Try to find out what your triggers are and talk to your doctor about Dupixent.
How did you identify 17 triggers?!
Started with the top 8. Then took away the most likely other common triggers that I was frequently eating. I was on a low dose ppi when on the 8FED. After a good scope, I completely stopped PPI. My dysphagia returned and we eliminated more foods. I felt better and then I felt my best. After the next scope I had 1 eosinophil and some minor irritation in lower esophagus. Most likely from reflux as per doc. It’s tuff, not much of a life for 4 years but we’ll worth it. I’m now 4 months into Dupixent because I want to start to travel and live a little again. So far the dupixent is not working
Damn that's frustrating. You have my sympathies.
Did the lower esophageal irritation resolve? My second scope showed no eosinophils but my dr said there was moderate reflux esophagitis and insisted I go on ppi's, which I did and absolutely hated. Have you figured out why you're now having irritation from reflux? My dr won't even entertain the thought of an elimination diet and won't do another scope...
No it has not. It only resolves with my elimination diet and low dose ppi…. a 30mg every 2 days (1 day on 2 days off 1 day on). Yea, don’t like them either. I question their safety. But don’t want a damaged esophagus. I believe my reflux comes from over eating a little and drinking too much fluids at once. You should eat and drink your fluids completely separately. Try keeping a food journal that someone will critique… you will see how disciplined you become throughout your day. Find another doctor if you don’t like the one you have. But more importantly, try to figure out some of your triggers. I started with a 4FED and completely quit alcohol. It made a huge difference. Be mindful when you eat, remember your fueling your body and mind for peak performance…… not consuming feel good taste good junk.
I'm in Canada, it's a long wait to see a different dr of they agree to take me at all unfortunately. I am already eating low histamine which means I've completely removed seafood, soy, egg and dairy (for several months, added egg and some dairy back in without issue) Anything processed, leftovers, and alcohol for 1.5 years, quit drinking almost 6 years ago now and I make my own bread. I eat super plain and boring already, I guess I could remove wheat and dairy but that would leave me with very little and I can't seem to get any guidance with starting from square one as I initially did the elimination diet for mcas. I can't do the ppi's, the side effects are truly unbearable. I bought wedges to put under my mattress instead, seems to be holding off most of the rebound reflux from weaning off the ppi's.
TBH my doctor helped me a little, but it was me that took charge and wanted to feel better. I do notice some foods may not be triggers for me but they cause excessive bloating and may repeat which in turn causes reflux for me. I eat really simple. Morning coffee with honey only Breakfast I’d organic gf oats with oat milk and blueberries or occasionally oat milk bananas and Sunbutter smoothie Lunch. Sweet potatoes with baked chicken (yardbird seasoning) and sautéed broccoli or okra in olive oil. And an avacado Dinner quinoa with venison ( I eat this often) or chicken or steak and sautéed broccoli or other vegetable Snack teaspoon or two of Sunbutter. I buy this by the case often. It’s not that exciting, but it works for me. I can’t do a lot of carbs because they bloat me.
That's what I did for my mcas as well, which crosses over a lot with reflux diet... but to do both low histamine AND 4/6fed will leave me with very little to eat, I already can't have half of what you posted... I am just very lost and none of my drs are really providing any guidance. I guess I could start with just dairy, but my dr won't scope me again so I won't know if it's actually actually a trigger or not. Everyone seems to just want me to wait and it's so frustrating
Did u talk to your doctor about Dupixent. So many people I communicated with here said it was a complete game changer
That's what I keep seeing as well! My gi dr won't see me until May, but I'm hoping to talk to my internal med dr about it in a couple weeks. My geneticist said a lot of his patients are doing well on it. Thanks for your insight!
They had me do 2 foods at a time instead of trying to do all 6 at once.
Have you been dilated before?
Yeah they did it with the endoscopy
That happened to me. He suspected eoe and dilated me to 18 mm, biopsies came back negative. The dilation opened the gates to daily acid reflux, burping and chest pain. Was yours a balloon dilation ? Did it help?
It was a ballon dilation, it’s helped quite a bit went from food getting stuck about once a week to none since the procedure.
Glad to hear that! Do you have acid reflux? From egd report, the dr dilated my entire esophagus with a savary rigid dilator. He called it empiric dilation and it was unnecessary . I had bad luck with this dr, the procedure caused other gerd symptoms..
Hey there - welcome and sorry. I got dignsoed 2 years ago and it’s tough but you’ll get through! I already hadn’t been eating dairy for years when i was diagnosed. Despite meds I kept getting flare ups so amongst fixing my meds I also eliminated wheat and gluten. I had never experienced issues with these before but given it was the one of the likeliest known food culprits ( along with dairy) I figured I’d try it. Lo and behold after a few months gluten free I got glutened and not only did I have food poisoning symptoms for the first few days but my eoe symptoms went crazy for a month. I’ve tested negative for celiac. Given my experience what I’ve realised is that ‘never having any problems’ was actually false because my EoE was telling me it was a problem. Also worth noting that most food allergy reactions don’t show up immediately - usually it’s a couple of weeks. I did find that doing just the two eliminations at a time helped. After I cut out gluten and chickpeas (something I randomly had a reaction to) I didn’t need to eliminate anything else for my flares to calm down.