Not acid but pepsin!

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I feel I have been on a long journey.  I started 7 months ago with throat, voice and ear problems.  I was put on PPI tablets, initially 30mg of Lansoproazole and this put up to 60mg when they had no effect.  In fact they made me worse and I started to get noticeable reflux. I was on these for 7 weeks and it was a struggle to get off them.  I had an endoscopy which showed a 3cm sliding hiatus hernia.  I used ranitidine and for the first month of the acid rebound period from the PPI tablets which lasted at least 3 months.  Gaviscon was also a great help.  I was getting terrible bloating, belching and feeling very full all the time. My throat and ear had a feeling of something irritating it, almost fizzing.  By this stage my throat was very sore.  I was very surprised to find from a pH manometry test that I did not have acid reflux.  I was really suffering and felt each day a struggle. I even gave up my work as I teach and my throat was so bad.  Everything I ate seemed to give me bloating and belching and I have lost a lot of weight which is worrying as I am very thin.  Tests for coeliac and candida were negative.  I felt my doctor was fed up seeing me and didn’t appreciate how awful I felt.  It is so hard to explain to other people what is wrong without a diagnosis. 

 

Then I saw posts and facebook page by Justpassingthrough (many thanks for these posts JPT, they have been a life line for me) and learned about pepsin.  I ordered a test kit.

 

I have just had my results back and am very alarmed (and scared) to see that two of my samples showed pepsin at the highest levels (>500ng/ml).  Pepsin is just as damaging as acid.

 

I have found that taking acid tablets, betaine HCL, have been a great help and watching what I eat.  I also take alkaline water to denature pepsin in my throat.  I am now wondering where I go from here.  Even if I get back to where I was before going on the PPI tablets I was still suffering ear and throat problems.  It seems unlikely that the NHS would do surgery for my hiatus hernia as I don’t have acid reflux, yet pepsin is supposed to be equally damaging.  I do not know if I will be on betaine HCL forever or if my stomach will recover.  I ran out lately and it was scary how bad I quickly became again. 

 

(My doctor looked at me blankly when I mentioned pepsin and acid tablets.) 

 

Other things that have helped me are mindfulness meditation, prayers, and the support and advice from people on this forum.

 

Any advice would be appreciated.

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20 Replies

  • Posted

    I think you should look for a Naturophatic Dr. They treat the problem in a different way. I have acid reflux and I was put on ppi too. Like you I stop the pill because I was feeling worse. I went to a Naturophatic Dr and she found that I have Small Intestine Bacteria Overgrow (SIBO). She gave me a lot of supplements. One of them its Betaine HCL 2 pills before lunch and 2 pills before dinner.

    She told me that SIBO its the root of my acid reflux. And if we kill the bacteria the acid reflux will stop. I hope she is right.

    One member told me that the use of ppi has to do with the present of SIBO and I know he is right. What gave me hope its that went I start with the acid reflux symptoms (only nausea and strong taste of acid) I took and antibiotic (Bactrim) and I was felling good for a few days...that make me think I got SIBO before ppi. When the antibiotic finish my symtomps return.

    My point its if you keep going to a regular Dr or Gastro you will have the same results. Go to a Naturophatic Dr. He can look for the root of your problem. She gave me a lot of suplements but the dose its different from the bottle.

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  • Posted

    Nat. Dr gave me Slippery Elm for my troath. It helps a lot with the inflamation that I got from stopping a ppi.
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    • Posted

      Thank you olgacecilia33,

      I am currently trying betaine HCL and having a little success. I have also tried Slippery Elm which did not help me much.  I think it is difficult to find a good Naturopathic doctor.  I tried a Nutitional Response person a couple of months ago and they were not good and didn't inspire any confidence.  You could be right about SIBO being the root of the problem. Thank you.

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  • Posted

    Hi Sleeky

    I have exactly the same problem as you. My 24hr pH test showed that I was having both acidic and non acidic reflux. I had the op which has stopped the acid but the non acid reflux is worse (bit of a mystery to my surgeon). I have had the pepsin test twice which has confirmed this. I also suffer from bloating, oily stools!, breathing and voice issues. From all the research I have done and all the experts I have spoken to - there are 3 possible reasons (none of which have been followed up by the Drs)

    1)   SIBO some bacterial overgrowth or another. Probiotics can help this.

    2) Food intolerances

    3) Too little stomach acid.

    I am now thinking the issue is 3).

    It is a scientific fact that the stomach produces less acid as you get older which is why more older people suffer reflux than youngsters. If the food isn't being broken down quicky it will sit and stagnate which then puts pressure on the valves. This would also account for the bloating.

    When I was younger I used to get dreadful trapped wind. My good old granny said "drink some bicarb in warm water. That will make you burp and free the trapped wind". It always worked.

    I have tried this test several times recently and what happens? Absolutely nothing. No belching at all. As bicarb is the opposite end of the pH spectrum to acid - mixing the 2 would cause a reaction that would make you burp. If the stomach has low acid then this would explain the lack of belching. I know this is a bit of bucket chemistry but you can have a Heidelberg test done. I don't think they do it very often as it is expensive. You swallow a capsule on a wire and keep drinking bicarb. The capsule gets removed and results read. I know some people don't agree with the simple home test but I believe it does give you a  result (based on my own personal experience). I too have just bought some digestive enzymes with HCL so I am going to try these and let you know

    We have to be our own drs I'm afraid. Good luck

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    • Posted

      Yes moonbuggy,

      I think you could be right about the low stomach acid and SIBO, with the first possibly causing the second.  I too have done the baking soda test which makes me think it is low acid.  Also my age and the fact I previously had my gall bladder removed would point to low acid.

       

      I am interested that you had an operation which cured your acid reflux but not the non-acid.  I was going to see if I could have an operation to see if it would help my reflux but this could mean it would be a waste of time.  What type of operation did you have?

       

      Many thanks for your support.

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    • Posted

      Hi Sleeky

      I didn't suffer too much with acid reflux (only now and then) It has always been non acid with me. I had the Nissen last year and it has all got a lot worse since then. Still get blocked nose/ears, vile taste in mouth, bloating, voice/breathing issues etc etc.They do say that the op isn't as successful on non acid reflux. So frustrating as no one at hospital seems to get what I am talking about. All they do is keep throwing PPI's at you, which of course are absolutely useless if you have low acid anyway. Interestingly, I also had my gall bladder out 2 years ago. Something else to research?

      I have also been told of a new product silicol gel which is supposed to be good. Available at health food outlets. Check their web site

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    • Posted

      Thanks for that moonbuggy.  I have heard that L-histidine, an amino acid, encourages the stomach to produce it's own acid again.  I am thinking about that.  I see my ENT consultant on Tuesday and am going to show him my pepsin test results.  I also get my hearing checked again on my left ear (this is the one that is blocked and has tinitus), the hearing comes and goes a bit depending on the pepsin. Today I have been focusing on trying to get enough calories to stop the weight loss.  Onwards and upwards!  Take care.
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  • Posted

    Gaviscon works good voor pepsin.

    ​I don't know how long it has been you're of PPI? I was having very similar problems like yours and I think I have them because of PPI. I'm of them for 4 weeks. My pain in the throat is almost gone. I still have acid rebound. But I've been on PPI for 14 months so I think I have to wait to improve.

    ​Sucking on licorice is nice for my throat. And I hav to watch what I eat: no sugar, no alcohol, no coffee. Thats about it, the rest is ok.

    ​I take betaine HCL, propiotics, vitamine C cristals, mineral supplements, vitamin d and vitamin b pills. It all works just  little bit.

    ​And just google on the name of Cagu and PPI. You'll find a nice case. Maybe yours is comparible. In that case you will also need to be patient, just like me.

    ​And I have a first appointment with a naturophatic docter in 2 weeks. He asked about my problems and the second thing he immediatey asked if I was using PPI and I should quit with the as soon as possible. But I already did...becaus that was causing me reflux...100% certain.

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    • Posted

      Hi tbier,

      I was on PPI tablets for 8 weeks, a first my dose was 30mg and in the second month it was put up to 60mg. I had terrible rebound and took gaviscon and ranitidine for a month after the PPIs.  The rebound lasted at least 3 months. 

       

      Like you I am careful with my diet but the problem is I have lost a lot of weight that I can’t afford to do.

       

      I have looked at Cagu’s postings on other sites and I agree that they give some hope of recovery.  We will just have to struggle on and support each other. Good luck with the naturopath doctor and let us know how you got on.

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    • Posted

      The rebound is really nasty indeed. The last couple of days I already feel a little bit better. Bit it all goes with tiny little baby steps.

      ​I also lost a lot of weight, but I'm now on a perfect BMI. Never knew I was able to reach this smile

      ​The diet is the key solution at this moment. But with fruit, vegetables etc. is also possible to make the tastiest things. So it's not that big problem I must say.

      ​Sharing info is indeed the best thing to do. Because doctors don't take much time and most of the times don't have any clue.

      ​Hang on, be strong...

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  • Posted

    I have acid pain and pain in my back and a cough im scared to go to doc
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    • Posted

      Hi Karen,

      There really is nothing to worry about in going to the doctor.  It is best to get help when you need it.  Are you worried in case there is something seriously wrong?  There may well be a simple solution and you will feel better after getting it sorted.  Remember you are in charge of your health and can always do some research to reassure yourself about any decisions you may have to make.

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    • Posted

      Hi sleeky , im scared in case he she says its more serious i keep getting pain when i eat  in my back
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    • Posted

      I understand how do you feel. Why dont you tried with a Naturaphatic Dr. since the treatment its less agressive than regular medicine. I got a terrible experience with omeprazole not only while I took it but when I stop it...acid rebound its horrible. I didnt have any sumptom on my troath but after stopping that poison I hot troath irritation. Its getting better using aloe vera and s. elm.
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    • Posted

      Hi olga, how long did the slippery elm take to start working and how much and when to take , i will try this and the aloe vera  fingers crossed 
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    • Posted

      Hi Karen,

      ​You are always going to be wondering about this until you get it checked out.  Maybe it would help if you could take someone along with you for support, at least to the surgery, if not the actual appointment. 

      All the best,

      ​sleeky

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    • Posted

      I took aloe vera 2oz every 2 hours

      (Buy the one that doesnt have laxative. Im using George's 100% aloe vera)

      I took DGL plus two before each meal.

      And Slippery elm lonzeges as need it.

      All those 3 help a lot with the acid. At the beggining I could notice a diff. It took like 3 weeks to notice big change. I know sound a lot of time but we are suffering anyway...

      Most people take zantac when they stop taking omeprazole but I made and effort and only used those products. Im still feeling inflamation on throat but its a lot better than before and the acid its less too !!!

      I hope that helps.

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    • Posted

      Thanks for replying olga, i will try all this  something must work

          all the best

                   karen x 

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    • Posted

      Hi sleeky, manage to get an appointment tomorrow my husband going to finish work early to come with me 

        all the best 

         karen x

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