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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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