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Hypochlorhydria, Heartburn and PPIs - Help

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  • Hypochlorhydria, Heartburn and PPIs - Help

    Hi all,

    My wife and I have been having quite a time for the last 10 months or so with various heartburn related issues. We definitely have an atypical case here, and our provider (Kaiser Permanante) are unwilling - to say the least - to treat her (they prescribed "Stress Management" and vicodin as a long term solution). The pain is intense enough for my wife to be taken to the emergency center several times, where she is simply doped up and sent home (after they rule out a cardiac problem).

    My wife was first prescribed famotidine. My wife had NEVER had heart burn prior to trying famotidine. She started feeling heartburn shortly after starting this. The doctor insisted that she continue to takes this "to give it a chance to work". After getting a 2nd opinion, she was switched to omeprazole. This causes severe heartburn, back pain and pain down her arms. She stopped this after a few more weeks (against the doctors wishes) - because the pain was excruciating.

    She felt a few days of relief, and then she started experiencing heartburn (this is the FIRST time she has EVER experienced heartburn, except when on a PPI).

    She then had an upper GI endoscopy - which showed her to be 100% normal - no ulcers, no hernia, no growths. The gastroenterologist recommended stress managment (since clearly, if there is no evidence of ulcers or acid related damage, then it must all be in her head (???) ). Remember, this is only about a month or two of heartburn, not years.

    We then switch doctors. My wife is prescribed Protonix (yet another PPI). Using it helped for about two days or so. Then the heartburn returned. After about a month or so, she stopped it. She felt ok for a few days, then the heartburn returned.

    We are now out of options here. I do have my own theory though. Perhaps someone out there with previous experience or specific knowledge could comment on this:

    What about hypochlorhydria (low stomach acid)? We broached this subject with our doctors and with the gastroenterologist. This was dismissed in a hand wavy fashion as if we were just playing doctor and wasting their time. Incidentally, I have a PhD (computer science) and my wife has a Masters (teaching, with a psychology and English undergraduate) - so we have a fairly strong ability to discern what is fact and what is nonsense.

    Anyway, let us assume that my wife had hypochlorhydria to begin with. This can cause heart burn, but my wife was only feeling the "discomfort" sensation, as if food was sitting in her stomach. What would a PPI do to someone with hypochlorhydria? This would make the hypochlorhydria significantly worse. Hence the onset of heartburn. As my wife stayed on this longer, the pain became worse and worse. Finally she stopped the PPIs (famotidine and then omeprazole) - resulting in a high level of gastrin in her system, and a period where the PPIs were wearing off - after two days she felt normal again, as her acid levels increased to return to normal. However, she stopped the PPIs cold turkey. What about the rebound effect of stopping PPIs like this? She then started experiencing heartburn again. Could this not be due to high stomach acid now? Due to the rebound?

    How long does it take for the full effect of PPIs to wear off? Not just the half-life of the drug, but the actual effect it has on the digestive system?

    She then started with the Protonix because of the heartburn. She felt ok after about two days (due to the decrease in stomach acid?) then two days later she started experiencing heart burn yet again (due to a further decrease in stomach acid? Back to hypochlorhydria again?). Then she stopped it after a month (we felt that it just wasn't helping at all) - once again cold turkey. Several days later the burning dissipated for quite a few days, then it resumed (hypochlorhydria again?).

    Does this make sense? I should point out that my wife does have a sensation of feeling full. She has had her gall bladder out. She also has problems digesting vitamins and even general food. All signs of hypochlorhydria.

    My big concern is that after all of this, she has now been off PPIs for two months, and her heartburn persists. She has never managed to get back to that pre-PPI state, where she was in no pain, but just had a sensation of "fullness" and indigenstion.

    Does anyone have any recommendations or advice? At this point we don't know what else to do. I am trying to change my medical insurance so we can receive some proper health care.

    Feedback would be appreciated.

    Thank you.
    - Sen and Wife

  • #2
    Sen and wife

    Hi I really highly doubt your wife has hypochlorhydria . Don't know how old she is, but it primarily occurs in older people , and it doesn't generally cause any clinical symptoms at all , according to the medical books. The natropaths say something totally different however. A doctor would tell you it's all internet hype.

    Visably there would 100 percent have to be gastritis on endoscopy for her to have hypochlorhydria . There are diagnostic tests a doctor can give to test for hypochlorhydria, you can certainly ask for tests ..... but i can't see a doctor agreeing to testing, because there is no basis, and it really doesn't have much clinical significance anyway..... Other than occasionally causing bacterial overgrowth ( stool tests) and atrophic gastritis which occurs over a span of years, and your wife had a perfectly clean endoscopy.

    I think it is terrible for her gastroenterologist to suggest stress management before even giving her the proper testing. Just because an endoscopy is negative , does not mean at all there isn't a real problem. Over half of people with GERD have totally normal endoscopies. ( NERD). Endoscopy has a less than 50 percent accuracy rate in diagnosing GERD.

    Your wife DEFINATELY needs a 24 hour ph test ( the definitive test for GERD ) to see if symptoms are acid related or not. --- or a 48 hour Bravo test. For example my endoscopy was negative like your wife's... but my 24 hour ph test was overwhelming positive for GERD.

    A Bernstein test ( acid perfusion test) would also be very helpful to see if acid is the cause of chest pain.

    Have you thought about diffuse esophageal spasms ? That is a non acid cause of chest pain and can be tested for via an esophageal manometry test, and treated with heart drugs.

    I found PPIS very hard on my digestion , nexium was the only ppis that i felt ok on . I never had heartburn either until i took a PPI There are quite a few on the board who can't tolerate PPIS well. It's not that unusual . Perhaps she would do better on Zantac. Some people do . It's quite common for symptoms to go away for a couple of days after stopping PPIS when the rebound passes.

    Sometimes it takes a long time to adjust to PPIS ( there are 5 different ones) and some people go through them all. Others cannot tolerate PPIS at all... so because you wife can't tolerate PPIS( she may not be giving them a long enough try) really doesn't give you a clue as to what's wrong with her until she has further tests.

    You have to understand that people with GERD don't really need PPIS , GERD involves a dysfunction of the lower esophageal sphincter allowing abnormal acid exposure to the esophagus. Most people with GERD have perfectly normal amounts of acid in their stomachs. -- But the only treatment available for GERD is PPIS which take the acid away. But they don't fix the root problem---which is a faulty esophageal sphincter that lets too much acid from the stomach up into the esophagus. There are no drugs to fix the sphincter.... hense the next best thing is to remove the acid.

    The full feeling is called early satiety and causes are GERD , IBS, ulcers, non ulcer dyspepsia and gastroparesis. Has she had her gastric emptying checked? That can cause the full feeling and chest pain as well.

    If GERD , spasms, gastric emptying has been ruled out , you have to look at functional problems ( cause unknown) like functional ( non ulcer dyspepsia ) , sensitive esophagus and IBS , all which can cause chest and stomach symptoms. There are no tests for these things, it is a diagnosis of exclusion. When everything else is ruled out by tests. Antispasmodics and Or antidepressants are given . An acid reducer too sometimes.

    By the way antidepressants are given for certain GI conditions not because the person is depressed or anxiety ridden , they act to numb pain sensations, ( there is an abnormal pain sensitivty in functional conditions) having really nothing to do with stress.

    Don't know what heart testing she has had so can't comment on that.

    Famitine is not a PPI by the way, Protonix worked the worst for me, and i had horrible side effects. Perhaps your wife would benifit from a motility agent like Reglan to move things along ( unfortunately that can have side effects too ) but has been a life saver for some. She should keep her meals very small and low in fat . Fat takes much longer to empty from the stomach.

    With her symptoms i would suspect functional dyspepsia or GERD or both. I'm not a doctor though, but it's an educated guess She really should get the proper tests . Not a very good GI she went to i must say. Has she ruled out any post gallbladder syndromes? With the early satiety with the other symptoms, it sounds more like GERD, an emptying problem, or / and functional disorder. Many on the board have more than one digestive condition.

    Good luck Take Care


    • #3
      Thanks for the info Tricia. I really do believe that you are more knowledgable about this than any of the doctors we have encountered so far. They really seem to lack diagnostic skills.

      What is clear is that we really were not given enough alternatives for diangosis. This is the first that I have heard of the Bernstein test (although it does sound like an obvious thing to do) or the Bravo test. The GI specialist did mention the 24hour probe last week, but this was in a dissmissive way, as if it was a waste of time - he certainly did not recommend it. He also stated that the manometry would be a waste of time: that even if it did show irregular spasms, then it would just be treated with donatal anyway, so therefore she should just take donatal. My research shows that this condition a) isn't treated by donatal and b) medication should only be given after an actual diagnosis.

      It is also interesting to hear that there are 5 types of PPIs. My wife was given two of them, and no doctor has even considered that the other 3 may work better. By the way, these doctors DID prescribe prozac (which my wife took for 10 days and then refused to take anymore after she started to experience the mental repercussions of this), with ONLY an endoscopy result and two failed PPIs to go by. She only took the prozac, because we were told that there was nothing left to do.

      What I did get out of our meeting was a referral for a Barium swallow/meal. This should pick up spasms and cancers and such, but I think that the 24 hour pH test would be far more useful.

      Anyone have any suggestions on how to get proper treatment? We plan to change to a PPO when my company has its next "open enrollment", but the change will only take place nearly six months from now. Is it possible to get additional insurance? Anyone have any recommendations?

      Thank all.
      - Sen


      • #4
        Your wife's symptoms sure sound like my onset of problems. Same deal. Never a day of heartburn in my life till the day it started. I couldn't take PPI's and tried three of them. Nexium for the first month killed me. I was sick as a dog and couldn't digest my food at all. When I could eat I lived on toast and cream of wheat. I lost 20 lbs and that was the only good part of it. I had worse heartburn and then the nighttime burn started which I never had before. I was finally given Zanac. It helps me enough to live and eat. But I suffer still. Mainly when I do what I just did an hour ago. Ate pizza. My doctor told me high fat foods are the problem. Spicy foods are tolerated by many. I can eat mexican food just fine. Its the tomato sauces sometimes and the cheese is really bad. So I pick my poison so to speak. If I cheat I suffer. Sometimes I am willing to suffer for something I love on occassion. My endo showed gastritis. I take 300mg Zantac twice a day. Now my new insurance won't pay for it. I am starting the over the counter which is very expensive also. Its nuts that they won't pay for it now after a year on it. I think stress did trigger my problems. Its a cycle now and I can't seem to stop it. I do notice as a woman, hormones play a part in this. Has your wife kept track of the times of the month that is worse? I am near menopause and I hear it very common to develop problems during this time.


        • #5
          Hi LosinSusan. I expect that like you, stress was probably the trigger, although the symptoms were purely indigestion related and (initially) not heart burn at all. The strange thing with my wife is that she literally never had a day of heartburn UNTIL she started the H2 blockers. Then the pain became unbearable when she switched to omeprazole. It also doesn't matter what she eats, whether it's a bar of chocolate or a glass of water. We've tried every diet we could (well... as long as it's vegetarian ). Anyway, this is what lead me to consider hyperchloridia originally, although every doctor we've spoken to doesn't think that it is very likely at all. Tricia is the only person to give me an explanation as to why it most likely is not hyperchloridia.

          Anyway, she went for a barium swallow test, and the results were negative. So we're still looking. We will be going to another GI specialist soon.

          Can someone tell me how their pH studies went? Is it very uncomfortable? Anything I should be aware of or ask?

          - Sen


          • #6

            I hope your wife will feel better soon.

            I have had GERD for over 15 years, been on a multitude of prescriptive meds, over the counter meds and tried every diet from here to forever. I've also had an ulcer which is now healed. My heartburn started when I was in my late teens and over time has become quite painful. I've seen many doctors over the years and everyone of them has a different opinion about what causes GERD.

            For a long time I was under the impression that I got reflux due to excess stomach acid. I took many different PPI's and was always dissapointed because they seemed to improve the reflux a little bit but my digestion would become horrible. Sometimes I would eat breakfast and then vomit it back up 3-4 hours after I ate it. What bothered me the most was that the food came up undigested. Luckily, I have a doctor who acknowledges the existance of both hyper- and hypo- chloridia. He also told me that hypochloridia can be caused by PPI's with long term use.

            So I decided to give the hypochloridia dx a shot. A physician may decide to treat hypochloridia with Betaine HCl pills to aid digestion. There is an expensive test to measure the level of acid in the stomach (a radio capsule) to see if it's low but you can also test by taking the Betaine HCl and seeing if it works. They may also give a supplement to heal the lining of the stomach and instigate the epithelial cells to make more HCl. I didn't want to take the Betaine HCl so I decided to try some vinegar and swedish bitters. I was a little worried about the vinegar hurting my esophagus but was surprised to find out the vinegar pH was only a 5 compared to the average soda pop at 3.2!

            Now this was scary. I went off my most recent PPI (prevacid) and started getting rebound issues. I was terrified to take the vinegar because I imagined the pain would be excrutiating on top of the reflux. I took a teaspoon of swedish bitters (it's supposed to stimulate HCl production) and then a tablespoon of white vinegar. My heartburn stopped within 10 minutes! Needless to say, I was pleasantly surprised.

            So now I can say I definately have LOW stomach acid. I take swedish bitters and white or apple cider vinegar before meals. I've been doing this for 2 weeks and feel a lot better. My doc says it takes the lining of the stomach up to a year (or more) to heal so I should just keep supplementing until then. I'm also saving money not buying the meds.

            If you think your wife is low in acid, there's no harm in testing out some vinegar or seeing a doc about Betaine HCl. Either way it's a good idea to definatively find out whether it's low or high stomach acid.


            • #7
              Sen, I am sorry your wife is being treated so poorly. I was sick for years before I could get anyone to think about helping me, so I can relate to what she is going through. I finally changed jobs so that I could get decent insurance. Less than a year after that, I learned that I was born without an LES, and that was fixed via a lap Nissen. I am fine today. I remain convinced that if I hadn't gotten better insurance, I'd be nearly dead today.

              Kaiser is infamous for going by their own rules, it seems, and patients can't usually do much about that. Is there any chance you can change insurers?