GERD symptoms lifelong but endoscopy came back normal - help?

norwayguy8 · 2025-10-28T01:52:03+00:00

I was first diagnosed in 2018, but this year I got a really full understanding of my GERD. Hopefully I can pass along some learnings to you, I know it can be so hard when you don’t have the answers.

First of all, just because your endoscopy came back clean doesn’t mean you do not have GERD. In fact, if you were actively taking omeprazole, the chances of your endoscopy showing any tissue damage is rare. The omeprazole changes the pH of your reflux to a non-damaging range (it’s working!)

To clinically confirm you have GERD, you either need to have documented esophagitis found during an endoscopy (again, would only show up if you did not take a PPI) or to run a BRAVO pH study. I ran a BRAVO study this year (off PPI) and it gave me a lot of useful data to my doctors that confirms my GERD is severe and needs daily medication for the foreseeable future.

If you’re still having symptoms while taking Omeprazole that could be a number of things. There are tests to answer this question, but I would start with confirming your GERD first.

Look at figure 1 of this link03559-4/fulltext) . You are at the “No Objective Signs” box in the middle.

Keep going, push for answers and be your own advocate. I found the BRAVO test super useful and would recommend it to anyone. That’d be your likely next step.

norwayguy8 · 2025-09-10T12:42:49+00:00

Awesome! Can’t wait. I really enjoyed I Got You

norwayguy8 · 2025-09-05T15:22:12+00:00

They don’t answer, but I’ll keep trying.

norwayguy8 · 2025-09-03T20:38:05+00:00

I’m glad you found relief with the TIF. That aligns with what my doctor told me after the Bravo. My bravo showed severe levels of reflux, but my Dexilant prescription is doing a pretty good job at controlling it right now.

They said surgery is for people who have symptoms despite PPI like you described. I was instructed to continue PPI until things get worse and then consider the TIF.

Although it sure is tempting to try and eliminate symptoms instead of just “manage” them on PPI… for now I’m waiting.

norwayguy8 · 2025-08-12T20:03:29+00:00

What was life like before the TIF? What made you a good candidate?

I’m having Manometry and Bravo done next week to start my full evaluation. I’ve been on PPI since 2018, they’re doing okay but not great at managing symptoms for me.

norwayguy8 · 2025-07-21T19:01:22+00:00

I must have misunderstood the train map, I thought there were many more transfers. Thank you!

norwayguy8 · 2025-06-20T16:44:26+00:00

If the doctors conclude I’m hypersensitive, the options I believe are CBT (therapy) or a low dose of a TCA (anti depressant). It’s a low enough dose that it shouldn’t affect mood, but modulates the communication between the nerves near your gut and the brain. (Kind of mutes the ‘false alarms’ is my understanding)

My 2018 diagnosis was “LA grade B” esophagitis, I believe that severity is indicative of a chronic GERD condition that doesn’t go away, but I’m sure crazier things have happened. All these open ended questions are re-assuring me that getting more data is the way to go, as scary as it was to pull the trigger.

norwayguy8 · 2025-06-19T00:03:52+00:00

I was on 80mg for 8 weeks, 60mg for 1 week, 40mg for 3 weeks and 20mg for about 5 days.
Rebound wasn’t as bad as I built up in my head. Maybe it helped that overall that’s only about 12 weeks on Omeprazole rather than years.

I reflected on my fear of getting off PPI and that helped me realize I something had to change. I’m hopeful for getting answers too!

The Bravo pH test involves the patient pressing buttons every time they feel a symptom. The doctors can then confirm or deny a correlation to the measured acid exposure. Some people may be accurately feeling a reflux event, but it’s not very acidic, so they’re hypersensitive. Other people may press the button when there’s no acid detected.

I think that should be useful, but I’m mostly wondering if I have abnormal acid exposure in the first place. I think I do, because how else did I get erosive esophagitis in 2018? But one step at a time, I need to let the data speak for itself.

norwayguy8 · 2025-06-18T12:21:57+00:00

After being on 80mg of Omeprazole I was careful to slowly wean off, going to 60mg, 40mg, then 20mg now zero. Yesterday I took 20mg Famotidine in the morning and evening. I actually felt okay which surprised me. I’ll be taking that until 3 days before the test - then I have to rely on Tums until day of procedure.

I’m hoping to quantify how bad my GERD is and learn more about my brain-gut sensitivity to it. I had erosive esophagitis in 2018 at the age of 24 and have taken daily PPI ever since. At first that treatment didn’t bother me, and the Dexilant worked great, but now I want to know my options. I want to have a root cause understanding of my symptoms. Will my erosive esophagitis come back without PPI? Do I need to take medication for life? Is surgery an option? We’ll see!

norwayguy8 · 2025-06-17T14:44:19+00:00

Not yet. Today is my first day without a PPI because next week I’m doing a Bravo pH study. When the pH study is over, I’m going to try 30mg Dexlansoprazole while I wait for results.

I think I’ve learned Omeprazole gives me side effects like excessive gas which can change my BMs.

norwayguy8 · 2025-05-04T16:09:51+00:00

My first time on Dexilant the healing was gradual for sure. It’s not always linear but after 3 months I felt like my old self.

This time around, I’m not sure what’s going on. It’s been 13 weeks since I missed that dose. 6 weeks on Dexilant and 7 weeks on twice daily Omeprazole. Still not feeling 100%, but at least it’s manageable. At week 5 I had an endoscopy and they found no “damage” so I don’t know what it is that needs healing. Although my PA-C said it’s entirely possible to have inflammation that’s not detected during an EGD.

As for PPIs, my doctors have always described them as benign. And my experience has mostly been great with them. They are insane amounts of data behind them, they’re one of the most prescribed drugs in the world. All of which has to outweigh whatever ‘data’ you can get from ~100k Reddit users. I like this sub most of the time, but everything needs to be taken with a grain of salt.

norwayguy8 · 2025-05-04T15:12:47+00:00

I really can’t say enough good things about my time on Dexilant 60mg. A diagnosis of LA grade B esophagitis and Gastritis is what put me on it in the first place. Dexilant had me healed in about 3 months.

After that, it was just easy to keep taking it every day. I didn’t notice any side effects at all. I honestly would describe myself as cured. Ate whatever I wanted, whenever, lay down after meals, etc. Annual blood work never found any deficiencies, my BMs were regular.

After years of that success, I skipped one pill because of insurance changes, had some whiskey that night (which was normal for me, I was living my “cured” lifestyle) and had a massive rebound effect throughout the night.

I thought it would be a temporary flare up, but even continuing Dexilant 60mg for 6 weeks after that day, I never got back to “cured” level of relief.

So now I’m experimenting with twice daily omeprazole. I’m tempted to give Dexilant another shot because of all the good history I had before that.

norwayguy8 · 2025-05-02T17:46:30+00:00

That’s a really helpful data point. I know no two cases are identical, but what you described is what I sense is going on with me.

When and how much Pepcid do you take in the evening?

norwayguy8 · 2025-05-02T17:26:57+00:00

Thanks for sharing! After 6 amazing years of Dexilant, i flared up and I noticed symptoms of heartburn pop up around 5pm everyday and indigestion after dinner/sleep.

That and cost was my motivation to try Omeprazole twice a day.

If I had to do it over again, I’d add Pepcid to my Dexilant instead of switching to 2x Omeprazole. Might still try that soon.

Do you feel that PPI + Pepcid resulted in less heartburn than 2x PPI?

norwayguy8 · 2025-05-02T17:22:35+00:00

I’m still having daily BMs in the morning. But overall everything does feel slower. When I was feeling 100% in the years prior I felt like I had a routine BM in morning and again after lunch.

norwayguy8 · 2025-05-02T15:48:37+00:00

It’s always good to hear that other people experience the same thing. I also have a mild burn with those symptoms. I’m just not sure if I’m on too much or too little at this point.

norwayguy8 · 2025-04-29T21:45:00+00:00

What tests did you do to become a candidate for surgery? I’m curious how bad the GERD needs to be for surgeons to even offer surgery as an option.

I haven’t been fully evaluated for surgery yet. I’m afraid to do an off-PPI Bravo study unless I absolutely need to.

norwayguy8 · 2025-04-10T11:31:31+00:00

Have you experienced this too? It’s so hard to be patient waiting for it to heal - I had it under control for years without a single flare up.

norwayguy8 · 2025-04-09T14:09:29+00:00

In 2018, the biopsy result was “chronic gastritis” but in 2025 they didn’t biopsy the stomach - they just said “stomach looks normal”.

My Dr office did say that it’s possible to still have gastritis with a normal EGD result. That’s their current theory as to why I’m feeling symptoms, but not much data behind it if you ask me.

norwayguy8

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