Rebound acid hypersecretion from short term PPI use that never goes away?

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Over 6 months ago I was very briefly on Omeprazole (20 mg/day). I didn't even have a problem with acid reflux prior to this medication, I was put on it because the doctor thought it might help for undiagnosed stomach pains! I stopped the drug after just 2 weeks because it didn't help the pains. Ironically after I stopped the drug is when I started having acid reflux (approx. 4-5 days after I stopped it). I didn't taper off because the doctor said there is no risk for acid rebound as I wasn't on it long enough.

Well now it's over 6 months since I initially stopped it and I still have reflux (chronic). It's always best when I wake up in the morning, then the more I eat / drink, the worse it gets. By bedtime it's unbearable.

In desperation I have went back on it briefly for 1-2 weeks at a time, a couple of times during this 6-7 months time frame in hope for some relief but it never fully removes the reflux.

I was told rebound lasts usually 2-3 weeks, but no more than 3 months and I was completely off it for 3-4 months, and only took Pepcid, and I still had the reflux. I just cannot get rid of it and I believe Omeprazole caused it to start. I should never have been put on this medication but I trusted the doctor (big mistake!).

Now someone has told me there have been extreme cases where the rebound stuck around for 6 months, even after short term use. Is that really true? I cannot find any info on it.

So the doctor forced me to go try the medication again, or he would not let me undergo any further diagnostic tests (my country uses public healthcare so I cannot just pay for the tests, I have to just take what I'm offered). He told me try to up the dose to 40 mg. At this time I had been off it for about 4 months and only managed by taking Pepcid. So I went on it for 2 weeks and then he said since it's not helping, you can either stop it or up it to 80 mg a day. I refused to increase it further as I think it was already a mistake to go back on it at all, so I started to taper off the medication slowly.

So after eating 40 mg a day for 2 weeks, I've been eating 20 mg for one week. As of today I am trying one week where I open the capsule and remove approx. half of the contents (if I can stand it, the reflux was terrible last night).

I also don't fit the criteria for people suffering from reflux due to poor lifestyle. I'm not overweight (actually the opposite), I never drank alcohol, never smoked, I don't eat spicy foods or greasy fried foods. Since the reflux started I have also removed all acidic foods like citrus fruits, tomatoes, etc. Nothing helps.

I have had nearly every test under the sun. Been probed from top to bottom, three upper endoscopies, two colonoscopies, capsule endoscopy, CT scan, 24 hour impedance pH reading, Heidelberg acid test, EKGs, countless blood tests, several fecal tests, biopsied for h. pylori and celiac's disease on three separate EGDs (all came back negative), Crohn's disease, IBD, etc etc. Nothing that could be tied to acid reflux has been found. The only test remaining is a SmartPill motility test which is supposed to record the pH levels of the stomach and I am having that at the end of March, so I have to be completely off Omeprazole by then anyways.

Do you think this is acid rebound, just a very extreme case of it? Why else would it start right after I initially stopped the drug? Like I said I never had acid reflux before this! What should I do?? This has to stop, I cannot go on like this! Should I try to stop the PPI completely and be off it for 6 months, and maybe it will finally go away? What else can I do?

Is going around with this for 6 more months a bad idea? How do I manage? I've tried antacids like Pepto Bismol, Gaviscon (doesn't work at all plus gives me terrible stomach pains and diahrrea), Ranitidine, etc. Also natural remidies like apple cider vinegar doesn't work. The only thing that has worked somewhat is Pepcid but now I have to take the stronger one (Pepcid AC, 20 mg) for any kind of relief. Will reduce the chances of the rebound to ever go away? In other words, is taking Pepcid every day counterproductive for the rebound to finally go away? Even when I take Pepcid AC, I still have reflux but not quite as strong. I am worried about what harm this does to my esophagus if I don't do anything to protect my throat from the acid. This has to stop and to me it seems it must be an extreme case of rebound, why else would it start right after stopping the medication, when I never had reflux in my entire life before starting this med? Please any suggestions are welcome, this is living hell for me. I am really, really desperate and the doctors are now telling me I just have to live with this, they refuse to help me.

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29 Replies

  • Edited

    Sorry to hear about what your experiencing. There was a study done a few years ago. They put 10 healthy people on PPi drugs, then put 10 healthy people on a placebo. After 14 days they abruptly had everyone stop taking their pills. Most of the healthy people who actually took a PPi drug now complained of acid reflux and stomach burning.

    Unfortunately, doctors are still prescribing these drugs randomly. In 2014 I started taking Nexium for my acid reflux. At first I thought I was cured, but then started having random pin like pains in my upper stomach. I thought that maybe I had swallowed a sharp piece of metal. I was also diagnosed with osteoporosis in my feet. I did some research and found it was all the Nexium. However, Nexium is very mild otherwise. It does work short term. I actually had to open the capsules and take the tiny pills. That then allows you to easily reduce the daily dosage so you can wean off very very slowly, like 3 months.

    You could also try my carbonated water treatment. It will help strengthen your esophageal sphincter.

    Buy 4 bottles of low sodium CW, plain or flavored. 5 times a day drink 6 oz of CW. Now just sit and focus to hold down the burp. It may be uncomfortable at first but will be easier after a few days. Start off holding down the burp for 5 minutes. Do this same amount for a week. Each week add 1 oz of CW and add 5 minutes to each session. By week 4 you should be at 20 minute sessions and 10 oz of CW. This low cost and worth a try. everybody is different. But for me it was a cure. John

    • Edited

      While weaning off of a PPi drug, you can use regular antacids to deal with stomach burning issues. Liquid antacids like Gaviscon can last all night. You can also add organic low acid olive oil and vitamin E.

      Ice smoothies and chewing ice can actually turn off the stomach temporarily. Buy a bag of crushed ice and keep some in a cup to chew. Wait 1 hour after eating.

    • Edited

      @Jonathan57679 Thank you for replying! This is the 5th day that I am opening the 20 mg capsule and removing approximately half of the contents. It's very difficult as these are microscoping little pellets so I have to basically guess at it. I haven't decided yet if I am doing that for two more days, then remove 3/4 for a week and then stop, or if I should keep removing half for another week before lowering to 3/4 for a final week.

      I'd like to taper much slower, but unfortunately I have to be without Omeprazole completely and all antacids one week prior to a test I'm doing on March 25, a SmartPill motility study. These drugs, including many others, can cause incorrect readings on this test and this test is crucial as it can diagnose many things and it took a long time before I finally convinced them to let me have the SmartPill test.

      Now I read an article by the doctor Chris Kresser that some people are dealing with this acid hypersecretion for 5-6 months and the permanent effect of PPIs is not well studied so it's possible in some rare cases these withdrawals might be "long lasting". But does long lasting mean like forever? Or just a really long time?

      Thanks for the tip of the carbonated water, I will try it. Were you finally completely freed from the acid rebound? No issues at all today? And did you notice a gradual improvement or was it pretty much constant and then suddenly it just went away all at once more or less?

    • Posted

      i have just came off PPLs 3 days ago how long do you think it will take for the acid reflux to start again or could i be lucky and be one that gets away with it iv been on them a few years now. And if it does come back how is it best treated do you think i was thinking gaviscon my be?

  • Posted

    I don't really have an answer because I'm going through a similar problem. Several people have told me to try betaine (a digestive enzyme)at meals where you are having protein. The reflux is actually due to not having enough stomach acid. I cant wrap my mind around that one but... I dont think the Pepcid is bad because it is not a PPI so using that and then slowly lowering may be a plan . Like REALLY gradually over a month or two. You are right to want to protect your esophagus. I'm not sure if you have access to Traditional Medicinal Teas but Throat Coat has been suggested I plan to try it. Obviously make sure your not sensitive to any of the natural ingredients. Also finding a good quality probiotic might help. So many doctors are useless. It's crazy to need to go on line for any validation or practical advice when they're supposed to know. Good luck.

    • Posted

      @jaisa Thank you for replying! I have read about low stomach acid and I actually did buy a betaine HCL with pepsin supplement and I was taking that for 2-3 weeks. It was very painful and made the burning sensations worse. I managed to finish the whole bottle of capsules but I decided to not continue past that because I was worried it was making it worse. If I could be diagnosed with low stomach acid then I suppose I would toughen it out and try it for longer, but I hate to add more acid if it really is an over production of acid my problem is.

      I am hoping the test I'm having at the end of the month will reveal something but I'm really starting to lose all hope.

      I looked in my records and I noticed I was actually totally without PPIs for over 4 ½ months and just used over the counter antacids. And nothing was showing any signs of improving, not even a little bit. It really makes me lose hope that maybe this is permanent and never will go away. 😦

      I don't know which teas as good for this but I recently bought something called DGL (deglycyrrhizinated licorice) which is supposed to coat the throat and stomach lining and help against reflux, but even at the maximum dose so far no luck with that either.

  • Posted

    I'm so sorry you're going through all of this. Maybe the testing will help. You say it gets worse as the day goes on so that could be a motility issue. You initially went in with stomach pain due to something . But that never resolved either I assume? Let me know if you get any relief. I read you're trying reducing the granules in the capsule. I think that's a good idea but go very slowly. Like take out 4 granules and then one more each day as long as you get relief. You may need to hold at one level for a week or two.Some progress is still progress.

    Also going back to the beginning (stomach pain) have you looked into food sensitivities. A friend who had reflux found out she was testing positive for a sensitivity to spinach . Stopping that resolved her GERD .

    I know you're feeling frustrated and losing hope. Hang in there (oh how I hate that expression). You are addressing the problem as best you can that's all you can do. Try to keep your stress levels in check, acid can make you feel panicky for some reason.

    Keep me posted.

  • Posted

    There are two separate issues that can be called acid reflux. One is a weak lower esophageal sphincter and the other is the stomach actually releasing too much acid. The carbonated water treatment started helping my reflux in about 1 week. But, I kept it up for the full 4 weeks. Some people have benefited from it, others who have hiatal hernias did not. But a stronger LES will always be a good thing.

    I was sleeping on a wedge for 10 years, but now I can sleep flat again. But, if I sleep on my right side, I build up pressure in my stomach and it is uncomfortable, so I sleep on my back or left side. That allows any gas to escape. It is due to the anatomy of the stomach.

    I did not do the camera pill. It sounded interesting, but I was also having intestinal obstructions and they said it could get stuck and require surgery to remove it. I did not want to risk it. I have rejected other options too, like exploratory surgery. My doctors marked me as uncooperative.

    Now, I can eat anything, as much as I want. Even a buffet. Pizza, spaghetti. But, my stomach is not able to make enzymes, so I take them with every meal. They speed up transit time. When food stays in the stomach too long it can cause an over acid condition. Most foods should exit the stomach in 30 to 90 minutes. If you can't make enzymes the stomach will just make more acid. I also chew sugarless cinnamon gum quite often. It help with digestion. The DGL did not help me at all. But, marshmallow yea does coat the stomach. Keep us posted at to your results. John

  • Edited

    I see you wrote this many months ago, and hope you are feeling better now. This said, I saw that you underwent countless exams, which did not result in significant findings. I had a similar experience, although in my case the excessive acid production caused me ulcers. Doctors could not figure out why I am prone to ulcers. Many tests and procedures later, the chief of endoscopy at a major hospital diagnosed me with a very rare condition called ganglioneuroma. This is a benign growth of cells from the autonomic nervous system that would not normally be found in the stomach and cause excessive acid production.

    Not saying this is what is happening to you, I am sharing in case this is useful information.

    As for the rebound, I am surprised you had such strong reaction after taking it briefly.

    good luck

    • Posted

      Thank you for your reply (sorry, I am also late replying!). Unfortunately, the problem has not gone away. I have undergone many endoscopies that keep revealing chronic gastritis and the doctors have no suggestion why it's not healing. First endoscopy in 2019 showed chronic inactive antral gastritis. Second endoscopy a couple months later showed the same thing, plus intestinal metaplasia. The next endoscopy two months later was supposed to be a more thorough exam where they took biopsies from all parts of my stomach to investigate the supposed intestinal metaplasia which is a condition similar to Barrett's esophagus, but it affects the stomach instead of the throat. Well after that endoscopy they suddenly said I didn't have metaplasia after all, and also no gastritis (???). Problems continued throughout 2020.

      By summer I ate antibiotics for a condition called SIBO which I had been tested positive for. The condition causes a lot of gas when consuming sugar and carbohydrates, which in its turn can cause reflux. Thankfully this treatment reduced the worst reflux episodes, but unfortunately it didn't completely remove them. I was retested for SIBO and the result was negative. Yet I kept having heartburn. I wasn't throwing up gastric juices like before, but it burned 24/7. I guess SIBO was not the root cause for the reflux, it only excarberated it due to all the gas that the SIBO bacteria was producing. I also don't believe anymore that the PPIs are the cause of the reflux. It was just a coincidence this started after using them.

      On top of all this, new symptoms were added after the antibiotic treatment. I started having a sharp pain under my left breastbone after consuming too big meals or anything with fat. The early satiety which I already had before, was also worsened. Heartburn gets worse now mainly when I consume fats. This includes healthy fats like olive oil, nuts, coconut, etc.

      I have followed a low acid diet and excluded basically everything bad like sugar, gluten, lactose, processed foods, acidic food, spicy, fat, etc etc. I did this for nearly a year and had a new endoscopy a couple weeks ago, and what do I find out? The gastrisi had not healed. In fact, it's even worse now as it has now spread from antrum also over to corpus!

      I have done a 24 hour impedance test which measured both acidic and non acidic refluxes and it recorded both acid reflux and pH neutral reflux, which is an indication of possible bile reflux. But the doctors are refusing to admit bile is my problem and also refuses to let me try bile binders for a week.

      I'm now in the process of arranging medical treatment abroad that will cost over $10,000 and this will be out of pocket expenses for me. So sick of living like this and frankly considering just ending my life if there is no positive change soon.

    • Edited

      E (40495):

      Prepare for a lengthy and informative post. I hope it helps.

      First, this is just out of curiosity. You mentioned this started last year in 2020. Any chance you may have had COVID? I've had persistent stomach issues scattered throughout my life, but never to the point of debilitation - until COVID. I was feeling terrible for weeks and tested negative 9 times using a variety of different tests, so we all assumed it was impossible I had it. Long story short, I tested positive for post-infection COVID antibodies 4 weeks later after I paid for my own test against doctor recommendation. Some people just don't test positive and they don't know why. The heartburn and esophageal symptoms I have endured during and ever since have been horrific and non-stop. I can't identify any specific triggers and it's seemingly random. I'm a healthy and health-conscious 32 year old and have never had weight issues. I have a great deal of knowledge of nutrition in general and am active in being a healthy human, so there's really no explanation for this. The intense burning, really hoarse voice, stomach pains, excessive salivation, dizziness, headaches, and dry eyes have been a total mystery. I have an endoscopy and colonoscopy scheduled for April but am determined to resolve this before then.

      I have an engineering background and am a heavily research-intensive type, and I spend most of my free time researching anatomy, nutrition, and health-related subjects especially when I'm in times of a health crisis, which I am no stranger to. Not only do these things take a ton of time to thoroughly research, the potential solutions also take a ton of time to self-test, particularly when there are many options or combinations. I'm in the middle of that phase currently, so this is an active and ongoing quest for me as I write this. Here are some of the things I want to share in hopes we can continue a dialogue on this and share experiences that may help people, because it is a terrible thing to experience:

      1. This is one of those situations where it can become a downward-spiral feedback loop, having multiple components all affecting each other and further contributing to the problem. The trick is figuring out the process of how to get a wrench in the wheel to put an end to the cycle. Admittedly, I haven't fully done it yet, but I am on to something and have so far definitely noticed a decrease in symptoms and an increase in well-being.

      Reflux/GERD/IBS create stress physically and psychologically > Stress creates anxiety > Anxiety increases acid production > Increased acid production creates inflammation > Inflammation creates more anxiety and symptoms > More anxiety and symptoms create more stress > More stress creates more acid secretion > More acid secretion leads to PPIs > PPIs lead to rebound reflux and worsening of symptoms > More stress and more inflammation > So on and so forth.

      You can see how this is a fragile feedback loop. These problems take time and effort to resolve. Step 1 is understanding this is the type of situation you are dealing with.

      1. The online rampant spreading of the whole "no, your problem is Actually not ENOUGH acid!" attitude is just a result of typical internet echo-chamber information regurgitation. Most of these people have no idea what they're talking about - they read some blog and regurgitate the information as fact and spread it as if it's some unbelievable discovery. There are thousands of people out there right now ripping through apple cider vinegar and taking HCL supplements that greatly contribute to further damage, all because they heard it from some uneducated internet stranger. Although it IS possible, it is highly unlikely and in our cases nearly certainly not the case, as betain HCL worsens the symptoms (which makes sense).

      In a hyper-acid environment, we can throw PPIs, H2 blockers, loads of antacids on the acid, but these are just temporary fixes. All we can do is wait till they wear off and hope something changed or the problem doesn't return, which usually never happens. Most dietary changes are also temporary fixes, though many of them can be legitimate depending on how much garbage you consume. For people already health conscious though, there is a deeper underlying issue here. I can avoid coconut oil to help reduce symptoms but why should I have to do this?

      Step 2 is understanding the likely systemic nature of this problem. Get off the surface and start digging beyond PPIs, antacids, diets protocols, and avoidance of fats that are important for health.

      1. Stress and anxiety are contributors to IBS and GERD, which are typically major components of the feedback loop. Why is this though? Stress really negatively affects the way your body works in many ways, both visible and invisible and in ways that both generate symptoms and in ways that do not. With a focus on our situations, the key is that stress/anxiety greatly contributes to a decreases in serotonin, melatonin, and their common precursors. Guess what many clinical research studies have shown? Serotonin is highly responsible for proper gut function and intestinal motility, while melatonin is highly responsible for proper function of the lower esophageal sphincter and gastric secretion. Surprise, surprise - now we're getting somewhere, and I bet you never heard any of this from your doctors. Unfortunately, I'm not going to the take the time to cite the many references right now so you're going to have to take my word for it.

      Since stress and its ensuing anxiety and inflammation are a major part of the feedback loop, I decided to put the majority of my focus here first because if you can control and/or fix this problem, then you gain a Huge advantage in the war against feeling miserable. I have been clinically diagnosed with PTSD from my traumatic health experiences in the past, so I can absolutely tell you that I know from experience what a large contributor this aspect of the problem really is.

      Reduced stress > reduced anxiety > reduced inflammation > increase in serotonin and melatonin > increase in proper gut function and reduction in gastric secretion > increased ability for stomach and gut to heal > increased ability to tolerate normal foods > increase in well-being > so on and so forth

      This is a big part of how we turn the cycle around, which is step 3 - understanding how to reverse the cycle.

      1. Assuming you're already taking steps to be a healthy human (some exercise, no garbage food or drinks, etc), what can we do ourselves to increase serotonin and melatonin? Well, reduce stress with more exercise, meditation, and getting your mind away from the rumination spiral of the constant attempt of solving your problems (this one can be difficult). These options don't give me any comfort to hear though so even though I do them, I need more than that.

      Cold shock therapy: Yes, it is real, it works, and you can do it in your shower every day. There are an abundance of clinical studies on both cold (ice baths) and heat shock therapy (saunas), so begin your feast. Get yourself a timer, because you're going to lose all sense of space and time when you punish yourself with ice cold water for 30-120 seconds each day. It not only increases serotonin, sometimes as freakishly high as 200 fold, but the effects are lasting and reach as far as a week or more. When you are severely low though, it requires almost daily treatments. I can tell you from experience this punishment has risen me out of some of the darkest times of my life and has done it with repeated consistency. It's not the sole solution, but you need to accumulate the power of many contributors and this is definitely one of them.

      D-Limonene: A terpene found in citrus peels like orange and lemon, several clinical studies have shown it to be largely beneficial in people with GERD because of its effects on gastrin secretion, but guess what else it does? It's been shown to increase serotonin, which makes me wonder if this isn't the real reason it has such positive effects on people. Even at the smaller doses I often take, D-Lim can wipe out my anxiety for a half of a day almost as effectively as an ativan. It's pretty amazing.

      Supplements (there are many, but to name a few):

      1. L-Tryptophan: The primary precursor to serotonin and therefore melatonin. I am just now getting to test this myself, so have nothing to personally report. Clinical studies have shown supplement tryptophan to be as or more effective as the commonly prescribed antidepressants. It's so effective, in fact, that people taking antidepressants can't even take tryptophan because the combination can increase serotonin to dangerous levels. There are many positive anecdotal reports on this as well, so I hold hope for this one. Dietary tryptophan has little or no effect, so it has to be in supplemental form.
      2. Melatonin supplements: Common doses are extremely small (like 1-3mg), but this has actually been proven many times to be safe at way higher doses, like 1,000mg+ for months. Melatonin is also now part of COVID protocols in hospitals across the US. I will be experimenting myself with this after I finish with tryptophan, so don't have any personal info to give on this one either. The studies on this are robust and numerous though, so you can look into this if you want. There are potential side effects with direct supplementation, so I feel more compelled to experiment with natural sources and its precursors like tyrptophan first.
      3. NAG (N-Acetyl-Glucosamine) - Effective in many patients with depression and anxiety. It doesn't directly increase serotonin as far as I know, but it is a big component of mucous layers that protect against inflammation and irritation in your gut and stomach. Studies have shown highly significant reductions in IBD by supplementing NAG.
      4. Turmeric: Shown to reduce gut and stomach inflammation. The absorption and actual effect is hotly debated, but I can tell you it does work and particularly for stomach and gut issues. There are tons of clinical studies that indicate high potential, and anecdotal reports are even stronger.
      5. Zinc-L-Carnosine: Zinc is critical in regulating gastic and mucosal secretion in your stomach and gut. Several clinical studies on zinc and it's effects on people with digestive tract issues.
      6. Organic Cherry Juice Concentrate: Clinically shown to increase melatonin in animals and humans. I use it daily and although its effects have not had drug-like powers, it has definitely been a positive contributor and that's all that matters.

      Ginger, slippery elm, marshmellow, quality fish oil, cold/overnight organic oats - the list is long and goes on, but I'm running out of time here and probably losing your attention in this lengthy post. These are just some that come to mind.

      Use this info to shift your mindset and direct your attention to resolving this on a cellular level. There is hope and no reason to give up, as there are hundreds of other legitimate and potential options that exist for resolving this problem, none of which your doctors are going to tell you about. However, you need to find a healthy balance of focusing on it just enough to make significant progress but where it does not contribute to additional stress, anxiety, or mental exhaustion.

      People that share these problems need to work together to find solutions. Let's go.


    • Posted

      Thank you for your long and informative answer! My first symptoms actually started in early 2019, got worse throughout spring and ultimately culminated by summer of 2019. That's when I had my first endoscopy and shortly after that all the reflux etc started. But no, I haven't had COVID. As I take care of sick and elderly parents that would never have survived an infection, I have more or less been isolated since the start of the pandemic. We recently received our Pfizer shots though. Anyways...

      While I do know stress/anxiety can make the symptoms appear worse and more intense, I don't believe stress per se can be a root cause to reflux. The symptoms actually started when I was feeling very little to no stress. On the contrary I was feeling pretty good in life in general. Another thing is that the intensity of my symptoms come in waves. I have flares, that appear to come out of nowhere. Sometimes I believe I see a connection to something I ate, or how much I ate, but other times not at all. I haven't found a correlation between stress and my symptoms. For the past year or so, I usually have had 4-5 days with lower symptoms, then I'll have a flare that can last anything from 2 days to a whole week. Many times I feel really good during the days when the symptoms are less severe, putting me in a good spirit and feeling optimistic because I try to tell myself everything is finally turning around for the better. Then all of a sudden, without me feeling stressed, everything reverses and I feel horrible again. Now, of course once I already feel like sh#t, the stress and anxiety the physical symptoms creates, may aggravate the symptoms that are already there. But it doesn't seem to bring them out so to say, at least not in my case.

      The funny thing about my reflux is that the pH tests I did showed very little reflux. I also had a high resolution esophageal manometry which determined nothing was wrong with my LES. Based on these tests, the doctor's opinion became that I didn't actually have GERD but was more likely suffering from symptoms that aren't true reflux but functional GI symptoms that mimics the sensation of burning throat and lower abdomen. So, I was given the diagnosis functional dyspepsia, which is basically what they give you when the pH test shows little to no signs of acid reflux and when endoscopies reveal nothing out of the ordinary. However, I believe this diagnosis is wrong in my case. First of all, I actually have something refluxing up in my throat. It is NOT my imagination. Sometimes I even threw up and it tastes horrible. Second of all, my endoscopies (I've had four now) all show inflammation in my stomach. Functional dyspepsia does not cause inflammation.

      The last endoscopy I had (about a month and a half ago) I felt was the most thorough one and the one I trust the most, as it was done at the largest university hospital in my country. They found reactive/chemical gastritis in most parts of my stomach. Reactive gastritis is due to NSAID abuse or reflux of bile into the stomach. Well I haven't taken hardly any NSAIDs so that rules that out, which leaves bile reflux - something I have again and again suspected. This corresponds with why PPIs and antacids is not offering me any relief. I finally managed to convince the doctor to let me have an impedance test, which is a pH test that measures both acidic and non acidic reflux. It showed I had three times as many non acidic reflux episodes as acidic ones. Bile is not acidic, so I'm suspecting that is what has been bothering me all along. The doctor however is ignorant about bile and says it's normal and everyone has it etc. So I am not offered any treatment. In fact, the doctor dropped me as a patient last week and I was told to live with it. I am now in the process of arranging a treatment plan abroad, as I believe the root cause to my symptoms is a motility problem, possibly due to a malfunctional pyloric sphincter. I can't get the test in my country because no doctor will listen, so I will be forced to go to a different country.

      So just to sum it up, I don't believe anymore (or at the moment anyway) that I suffer from GERD but rather bile reflux and dysmotility. Perhaps once I get the tests I am trying to get, I will know more. The stomach and gastrointestinal tract is a very complex area of our bodies and there is usually more than one isolated problem going on. There isn't just one answer to every person's problem.

      Again thanks for your effort and contribution to this thread. I hope we all can feel better and find ways to reverse this horrible crap we're going through on a daily basis.

    • Edited

      While I understand you feel stress/anxiety is not a root cause, I think you are majorly underestimating its enormous contribution to the prevention of getting better or recovering from this type of problem. It is a major part of feedback loops related to GI distress and is not simply based on how you generally feel on most days. The effects of chronic stress which you, without doubt, have been under, are long lasting and very difficult to correct in their own right. Your mention of ending your life is really all the evidence needed to confirm that you've been under this type of high-level chronic stress. The horrendous effects from it, whether they initiated your GI distress or not, are a long lasting contributor to ongoing problems and is not dependent on whether you have had a happy day or not. You don't need to feel stressed in order for the nasty effects of chronic stress to create seemingly random havoc throughout your body. This is just something to keep in mind, because I feel you are writing it off. Also, I am not suggesting this is the cause or sole reason you can't eliminate your problem - you know your body best - but it is definitely contributing on some level.

      I can completely relate to the few days of feeling good lifting spirits only to hit a wall and become depressed once things randomly turn for the worst for no reason. It is Exhausting mentally and physically. I also have long suspected bile reflux and/or pyloric sphincter malfunction in my own case, however have not directly treated that yet. It is next in line though and I am going to start with daily supplemental ox bile/bile salts which, as you've noted, are alkaline in nature and would not cause the potential harm adding more acidic substances could (apple cider vinegar, betaine HCL, etc). Have you tried this yet? The anecdotal evidence behind this treatment is strong and many people completely resolve their issues with this alone. I'm very curious to see if has or will help your case.

      On another related note - if it has now been shown your reflux is not acidic the majority of the time, then is it not possible you actually do have a low acid problem? Low acid problems can prevent proper digestion which can lead to bile reflux. Have you recently tried betaine HCL and/or pepsin supplementation? This combo tends to resolve low acidity issues by aiding in proper breakdown of foods in your stomach before entering the small intestine. PH is the trigger for your pyloric sphincter to open and empty your stomach. Too high of a PH in stomach and/or small intestine prevents your stomach from emptying when it should, creating a backup and surplus of stomach juices. The acid that does exist in your stomach then refluxes up into your esophagus, causing havoc and lodging pepsin crystals into your esophagus where they can get activated and cause pain any time you eat or drink something acidic. I'm sure you're aware that PH is also the signal for proper LES function.

      There are also several highly qualified doctors that believe 90%+ of all GI distress cases that result in either the actual having of or the perception of having acid reflux are actually caused by constipation. Most people are severely constipated and show no symptoms of it. Have you had any abdominal x-rays or suspicions this could be an issue? Constipation, might I add, is also a result of low PH and stress/anxiety. I do notice when I address my constipation I seem to get GI symptom relief. Again, the root cause must be address rather than just taking laxatives (whether natural or drug), and this is typically related to stress and/or PH.

      Personally, I'm still unsure of the root cause of my situation and am not sure whether its intestinal, bile reflux, GERD, or even a sinus issue. Bad bacteria in your sinus drain down your esophagus particularly at night, where it can cause problems and symptoms in your esophagus, stomach, and GI tract. I often have a hoarse voice and it seems it can be related to any of these things. The one thing I seem to get though, that I haven't heard anyone else describe, is some sort of spasm that seems to be originating from either my LES or my pyloric sphincter that creates a heart palpitation 85-90% of the time. Sometimes the contractions are repeated and create repeated palpitations, and sometimes it's just one contraction that creates one skipped beat. It seems to happen more often when I exert myself or am lifting/flexing my abdominal muscles or exercising, etc. On bad days in the past, I have had full on attacks where these constant contractions cause my heart to palpitate and skip beats for 30-45 minutes straight and can only be stopped by taking an ativan and drinking strong ginger tea. I can never quite pinpoint where they originate from. Have you ever experienced anything like this?

      Please stay in touch and keep me posted and I will do the same.


    • Edited


      Stress might very well be a contributor. Naturally I try to relax and think as positively as I can, but there is only so much you can do. From the various changes you have made, do you feel you are on the path to healing? Or are you as of now only suppressing symptoms? Another interesting thing is why it started so suddenly. The problems started creeping up early 2019 and by June the reflux started. I had my endoscopy almost immediately and they told me the gastritis was already chronic at that time (but inactive). They said this is not something that happened in recent months, this inflammation has been there for a long time. Well, so why did the symptoms not start until now then? The doctors say that the symptoms may not even be due to the inflammation. This is all very confusing.

      I haven't tried ox bile, but I have tried many other supplements. I don't know if my original post mentioned it, but fall of 2019 and early 2020 was the absolute worst time in all this for me. The reflux was so bad, that I had suicidal thoughts. Woke up from throwing up in my sleep, had so bad constipation that I was not able to sleep, etc. I did a SIBO test and found out I was positive for methane dominant bacterial overgrowth. Nobody told me about SIBO, I found out about it myself after researching online. The GI doctor at the time was unconvinced, even though he acknowledged the condition. He didn't know the difference between hydrogen and methane SIBO and just prescribed the antibiotic Xifaxan. I ate that for two weeks and it barely helped. By spring my health was so poor that I was bed ridden after 3pm every day. SIBO bacteria lives off sugar and carbs, so I was living off of chicken and eggs. I lost down to 125 lbs. In desperation I contacted an alternative clinic that prescribed Xifaxan and Metronidazole (Flagyl) that I ate for 18 days and the worst of the gas and horrible reflux improved. I retested negative for SIBO a few weeks later. Since then I've been able to eat carbohydrates again like potatoes. I've gained a few pounds but I'm stuck at 140 lbs. I am not able to eat past 2000 calories if even that, in a day.

      The other symptoms such as the pain under the left side of my chest, excessive burping, early satiety, etc all seem to have started after clearing SIBO. Or maybe it just got worse. Since getting rid of SIBO I feel better. There really was no other alternative, had I not taken those antibiotics I would not have been alive to write this.

      Anyway, that functional medicine doctor kept wanting to address other issues with my stomach like dysbiosis, vitamin and mineral deficiencies and so on, with various supplements. He sold me everything from glutamine to collagen powder to digestive enzymes to vitamins to omega 3 capsules to biofilm busters to protein powder to lecitin to blah blah blah blah... I think I had up to 25 different supplements at one point that he claimed were all based on the many tests he ran on me. Naturally this costed a fortune and I feel like an idiot now I spent all that money. But what is done is done. Most of the supplements made me feel worse. Even when I tried them one at a time, they aggravated my symptoms. I was already avoiding gluten, dairy etc since any this is usually advised (even though I don't actually know for a fact this stuff actually bothers me). Then the doctor wanted to restrict my diet even further telling me to cut out eggs, nuts etc.

      When I brought up concerns of bile reflux, pyloric obstruction etc he simply ignored this, like most of these kind of doctors would as they don't have the ability to check any of it.

      I think the basic idea of this functional medicine philosophy is good, but I don't think it should replace western medicine. Instead, it can be used as a compliment. One shouldn't necessarily exclude the other.

      My diet is still awfully restricted. Lots of easily digested, low-fibrous, low-fat, low acid food. Potatoes, chicken breast, almond milk, white fish, carrots, beets, eggs. Fat (and large meals) bothers me more than anything, so I try to have lots of small meals throughout the day to keep the symptoms down. And to avoid losing more weight I get my sole fat intake from almond flour (home made bread), some nuts, and coconut milk. I can only consume these in small quantities or the reflux sets off. Lots of healthy foods I used to enjoy I cannot eat anymore such as oatmeal, salmon, olive oil, and much more.

      About low acid, I suspected it at first, but like I explained earlier I did the Heidelberg test that indicated not low stomach acid. OK Heidelberg is kind of questionable and not FDA approved in any way, but that is the only test I'm aware of that directly measures the acidity in the stomach. I did try HCl with pepsin and it felt like it was gonna burn a hole through my stomach. I did however recently order some digestive enzymes without HCl or betaine pepsin, to see if I can tolerate those better. I've been taking a multivitamin throughout most of all this, since my diet is so horrendously malnourishing, but I still worried about not getting enough vitamin c as I can't even drink orange juice anymore, so I recently started taking a so-called buffered vitamin c pill that contain only magnesium ascorbate and no actual ascorbic acid. It doesn't seem to bother me. I'm not alternating between the multivitamin and the vit c pill every other day. Some day when I feel I've had at least a week or two without a flare I will attempt both together.

      And yes, constipation was my first symptom and although I take medication for it now, I believe I still suffer from it in between the doses of the drug. I don't take laxatives, I take a prokinetic medication called Prucalopride that acts in the small intestine. The biggest dysmotility is in my small bowel. I did a SmartPill wireless motility study that recorded slightly delayed gastric emptying and then very delayed small intestinal transit. All in all the total transit was like 67 hours. The breakpoint for gastroparesis is 72 hours. Prucalopride gives me one bowel movement a day. I take it on an empty stomach before bedtime and then when I wake up I'll have a BM. But then as I add more and more food to my stomach throughout the day, the symptoms increase. I'm almost certain the symptoms are due to some type of dysmotility. Before the reflux started I could go a day or two without visiting the bathroom but didn't pay much attention to it as I didn't feel any physical discomfort from it.

      I reckon they will check all this out once I manage to get help at the hospital I'm trying to set up a treatment plan with abroad now. Of course the root cause must be identified and addressed, I also don't want to depend on a prescription medication. Even with the medication I still feel sick anyway.

      I've been in contact with the largest hospital in Germany as I won't be able to get more help in my own country (Sweden). This will be very expensive. The reason I chose Germany is because the hospital had a very good reputation and also that if I choose a hospital within the EU, I might be able to be compensated for some of the medical costs by my government. I'm applying for that this week as a matter of fact. The doctor in Germany is confident he will be able to diagnose my problems and has already a preliminary treatment plan.

      If the request for compensation is denied, I might try my luck in the United States instead at the Mayo Clinic. I have had a colonoscopy and endoscopy in the U.S. before but I was not happy with the clinic I did it at. Again it would be very expensive without a U.S. health insurance but that is plan B for now.

      No I haven't experienced anything heart related like palpitations, although I have heard others describe this. What all tests and procedures have you gone through so far and what have they shown, if anything (if you don't mind me asking)?

    • Edited

      Overall - interesting. Much of it mimics my own experiences. The advice I feel like offering before anything else from the overall vibe I gather is it really seems you are relying too heavily on traditional medical doctors to find the solution to your problems, which is extremely unlikely to happen. Traditional medical doctors, no matter how good, are educated, trained, and driven to be specialized and rely solely on drugs to solve problems, many of which are toxic and short-term solutions in nature. Don't get me wrong, I'm not anti-medicine or anti-doctor, but they have many limitations and this needs to always be kept in mind. In my opinion, GI tract dysfunction is one area where the limitations are at their peak.

      I live in the US and have an unusual amount of experience with some of our best national hospitals and doctors, and also live in a city with multiple top 15 ranked hospitals in the nation. I've had 3 heart surgeries and have been through hell more than once, and that's not related to any of this, but it is related to my experiences with some of the world's greatest doctors and a story that Does relate to all of this.

      I'm going to boil down 15 years of heart-related hardship into a small paragraph so there are many gaps here, but I just want to get this point across. I was a top athlete in my younger years and this was halted by atrial fibrillation. I have no known medical pre-dispositions or structural heart issues that would cause a disruption in the electrical signals in my heart, and my case remains a mystery to this day to the best cardiologists and electrophysiologists in the world. I am the only known case documented in the USA (yes, this is really true) that was diagnosed with AF at my young age of 14 with no reasons existing whatsoever that would otherwise cause this problem to happen in a young healthy body. Ongoing case studies are being done on me at 3 different top hospitals in the country. So why am I telling you all this and how does it relate to our current circumstances now?

      With all of the surgeries, attention from top doctors, and ongoing case studies, nobody ever mentioned that acid reflux and GERD is the root cause of 80%+ of non-structural atrial fibrillation (meaning, no known structural issue that would cause an arrhythmia - this is me). MANY clinical studies exist and have existed that show anti-acid treatments and LES treatments completely resolve atrial fibrillation in about 80% of these patients. To make a long story short, I do believe this was the root cause behind my own highly unusual story since, when I take strict measures on treating acid issues, my heart always starts to feel amazing. Normal rhythm with normal heart rate and blood pressure. It really is incredible and there's much more to say, but I hope you see my point here. My parents spent $300,000 on my surgeries when I was a teenager, because they needed to be done at Cleveland Clinic since the procedures were so advanced and I was so young. The procedure had never been done on someone my age before and the doctor that invented the procedure came to do it himself. After all this money and hell and reliance on the best doctors in the world, where did I end up getting the most legitimate help for my problem- the freaking internet. PubMed, NIH, Wiley Online Library, and other great sources that post thousands of clinical studies of which some crazy high percentage of medical doctors do not keep up with or study. It is highly possible that I never needed any heart surgery at all. In fact, that is what I now believe. Keep this story in mind on your wild goose chase around the world looking for medical doctors to find the solutions to your problems. I'm not saying it can't be done, but I'm saying it's very unlikely.

      I can definitely say that I am not treating symptoms and I have achieved progress in my relief. It is not fully resolved, and I am actively working towards that mostly under my own direction, however I do have medical doctors involved as well. It is and does take a ton of time, however, to take this on yourself. Not only the research itself, but the trail tests of each and every possible solution isolated one at a time. It's important to note that there is a major lag time, both in symptom appearance and disappearance. You demonstrated experience with this when you said one of your first doctors told you the gastritis was chronic and and existed before you even showed symptoms. This doesn't surprise me - this is how things can work in the body. You can't erase years or decades of errors and accumulations of problems in a month. It takes a lot of time to cause a disruption and it takes a lot of time to resolve the disruptions - note that this is the exact same way stress/anxiety and the imbalance of critical hormones work. Taking a supplement for a week tells you nothing, but 2-3 months might. Many folks taking ox bile/bile salts note complete resolution of GI symptoms in 3-6 months, but usually not before this for the serious cases. I ordered a high quality ox bile just today, and am looking forward to trying it. I will report back to you if interested.

      I've had stool tests for the major stuff like parasites, C diff, h. pylori, and other common problems. All came back normal to my surprise. I have long suspected candida or SIBO, as carbs can cause me some major issues, but I have not be reliably tested for this yet. This is in my near-future plans. Regardless of having that test result though, you can obviously just start treating it and see if it resolves issues. I have been taking time to create my own food list based on my own research, both clinical and anecdotal. It is restrictive, yes, but a few months of this way of life may correct much of what is wrong. The diet is low FODMAP, low histamine, low tyramine (a biogenic amine known to cause problems in your body, check it out), low PH, and low carb. I made huge lists from each one of these categories and am now creating a list made from all the common denominators in the all the lists. I'm looking forward to trying it and will report back if you're interested. I can tell you this, my problems got drastically worse after I did a 10 day course of penicillin during COVID, when my doctor thought I had strep throat instead. Antibiotics wreck your natural microbiome for 9 months, and that's if you actively try to repair it afterwards. It can be years if no attention is paid. This is a big can of worms so I won't get into it, but antibiotics are terrible for your body and should only be used when critical for life.

      I have a combo endoscopy/colonoscopy scheduled for April. I have not received either one before and am quite curious to see what they find; however, I am also interested in the challenge of self-solving my problem before it gets to procedure day. Either way, I will still go through with it just for reassurance of what is really going on.

      Most recently, I been using specific probiotics on a restricted diet, with sodium butyrate and bovine colostrum supplements. Just today, I made homemade suppositories to be used rectally for maximum absorption/effect and minimum stomach irritation for those things that do cause any irritation. Not the most exciting thing to have to do, but we both know anything that can work is worth doing. A large majority of probiotics don't make it where they need to be and this also applies to any nutritional supplement. What is the solution to this? Suppositories.

      There is a direct link to GI dysfunction and anxiety, which in my case is significant and noticeable. When my gut is acting up I am panicky and anxious. It feels like constantly rumbling and air and movement and random squeezing and relaxing of my intestines. It's hard to describe. Sometimes I can't calm it and I take an ativan, which solves everything nearly every time by relaxing both my gut and my mind. The trick is to get to a place where I can do this with natural alternatives, and then even more to get my body to a place where it just functions correctly from the first place. Do keep in mind that your body is designed and built to operate perfectly. With all the tests you've done I think it's safe to say there really isn't anything fundamentally or structurally wrong with you. There is some sort of imbalance that has been thrown into a problematic recurring feedback loop, and it needs corrected. Your doctors aren't going to say this or provide many options for treating it, because this is not how they are trained. The game is trying to find out what the problem is so you can correct it, but if you can't diagnose the problem, which is the circumstance for both of our cases, then what shall we do? Well, address everything. Anything and everything. Stress. Anxiety. LES dysfunction. Stomach PH. Bile issues. Gut motility. Bacterial overgrowth. Candida. On and on. Get blood tests and stool analysis on your own merit.

      Hope to hear back from you and stay in touch!


      Moderator comment: I have removed product names/websites as we do not allow posting of these in the forums. If users wish to exchange these details please use the Private Message service.

    • Posted

      @Ryan46531 I sent you a private message, but I have no idea if it ever was sent off. Let me know.

    • Posted

      I don't think I received it, but I sent you one so let me know if you received it

    • Posted

      I received your PM, but I still can't reply to it. Page just refreshes and I have no idea if my replies go out but they appear not to since you didn't get the one I sent yesterday (sucks because it was a long one). I just e-mailed instead.

    • Posted

      I have gone through a similar situation as you. Unfortunately for me, I have also lost almost 20lb in the process. Doctors don't know why, at least not yet.

      There is a condition called the Zollinger-Ellison syndrome that cause a hyper secretion of acid in the stomach that many doctors miss for chronic gastritis. It shows usually between 30 and 50 years. Fortunatelly is uncommon but when present is always missed. You cant see the lesions in a CT Scan, XRay or MRI because they are small... only a SRS will pick them up

      If you are able to measure the gastrin levels of your body after being off PPIs more than three weeks and they turn very high, it is a high indicator of this.

    • Posted


      I read this discussion and would like to discuss further on this. Can I email you? Can you please share your email?

    • Posted

      Hi, I just wondered if you still use this site and I could PM you?

    • Posted

      I'm really sorry to read this. I hope your gastric issues are resolved now.

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