Can't seem to tolerate PPI's

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I'm hoping that someone out there can give me some advice.  Several months ago I started to have severe stomach pains so went to the doctor.  He put me on Protonix which I had bad side effects from.  Then they tried Dexilant.  Same story.  Same with Nexium.  Seems I can't tolerate any of them.  Then they did the Endoscopy and I have Gastritis & Duodenitis.  Small Hiatal Hernia and no H Pylori.  I've been taking Zantac with little help from that either.  It seems the problems are worse now than when I started a few months back and the doctors don't know what to do with me since they say it's very unusual for someone to have issues with these drugs.  I'm sick almost all the time and have tried natural remedies as well as changing my diet.  Nothing seems to work. Am currently taking Zantac & Carafate with little success too. Thinking of surgery but am very nervous to do something so invasive.  Found some information on the Stretta procedure which is less invasive.  Some websites say that it's pretty reliable but others say it hasn't had much success.  Any ideas?  I'd sure appreciate any information that anyone could pass along.   

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12 Replies

  • Posted

    Hi Jody

    I’m suffering from many of the same issues. Ppis have not helped me either. I’m in constant epigastric pain and can’t eat much. Boost and water lately. Have lost 30 pounds since December. With the gastroscope and ct scan normal they told me it was GERD and sent me on my merry way. I feel I have been misdiagnosed and maybe you have too. These ppis are supposed to work “for everyone”...... which to me screams are they sure of your diagnosis?

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    • Posted

      It sounds like we're suffering from many of the same symptoms.  I too have lost a considerable amount of weight and I really can't afford to as I'm small to start out with.  So the whole thing makes me very nervous as there doesn't seem to be a light at the end of the tunnel.  I have to admit that after seeing all of your posts that maybe I have been misdiagnosed.  Maybe I am low in stomach acid, maybe you are as well.  It does seem that after I started the PPI's my stomach acid got much worse.  Something I never dealt with before.  I initially went to the doctor with pain in my stomach after taking Ibuprofen everyday for pain.  I think in the beginning it was just irritation.  Now it's so much worse. 

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  • Posted

    I had an endoscopy, also hernia and although it showed mild gastritis, I had terrible, God-awful reflux, burning all the way up into my jaw, nose & eyes. Chest pains till I could hardly breath. They gave me Pantoprazole PPI and after 3 months all was so inflamed, that I was unable to eat.

    That's when I started researching reflux, etc. online. I came to the conclusion that I have TOO LITTLE STOMACH ACID instead of too much. I weaned myself off the PPIs and felt almost immediate relief. My body does not produce enough stomach acid and the PPI reduced that to nothing. No wonder I was suffering! JUST SAYING; PERHAPS YOU ALSO HAVE TOO LITTLE STOMACH ACID.

    "To perform this test: mix one quarter teaspoon of baking soda in eight ounces of cold water, first thing in the morning, before eating or drinking anything except water. Drink the baking soda solution. Time how long it takes to belch. Time up to five minutes. If you have not belched within five minutes stop timing anyway.

    If your stomach is producing adequate amounts of hydrochloric acid you should probably belch within two to three minutes. Early and repeated belching may be due to excessive stomach acid. Belching results from the acid and baking soda reacting to form carbon dioxide gas. The Heidelberg or Gastrocap tests can be employed for confirmation of the results of this test."

    Try it and see. In any case PPIs are terrible for your body in general, same with alll of the antacids on the market. I hope you will be able to find a better solution!

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    • Posted

      Thanks so much for your reply.  I'm so glad you were able to find a solution.  I've thought of the low acid in the past but am nervous to stop the medication because I'm already in so much pain.  How long did it take you to wean off the meds?  And did your symptoms increase during the weaning period?  It would be unbearable if things got worse before they got better.  I'm also a little concerned that I'll do even more damage to my stomach if by chance I do have too much acid.  It sounds like you made a very good decision to stop and I'm so glad that it worked out for you.  It's nice when someone in this terrible situation can figure out what's really going on. 

      Thanks for the advice!   

      I'll try the baking soda test and see how it works out.  I wonder, since I'm on medication if it would change the results. 

      Yes, I agree.  The PPI's & antacids are bad for us.  I already have Osteopenia so being on these meds isn't good at all.  I have to wonder why the doctors aren't aware of the low acid.  It seems I'm hearing of this more and more over time.   

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    • Posted

      I stopped the PPIs for 3 days to get them out of my system before I did the self-test. My pain was half just after getting off the PPIs! Low acid also causes reflux, but in my case, not as bad as when on the PPIs. I tried Betaine Hcl, but had no luck with getting the dosage figured out and finally reverted back to "home remedies" (apple cider vinegar, baking soda, chewing gum...long list!) My problem is that the damage reflux caused to my throat etc is still not healed and I'm having a hard time trying to gain back all the weight I've lost! I am totally exhausted and cannot enjoy a normal life.

      PPIs, antacids etc. are just a way for the pharmaceutical companies to make money. PPIs are among the 3 top selling drug products in the U.S. The doctors make money by selling their products - whether they help us or not! It is a big racket! I live in Germany and it's the same here...none of the docs I went to here were willing to test for low acid (that doesn't exist, I was told), nor would they refer me to a reflux clinic for a LINX procedure to fix the hernia. Totally disgusted with this GERD and the rip-off medical system. Sorry, but the best you can do is research all you can yourself and try anything that you think might help! I do hope you have altered your diet...that is a must! Good luck to you!

       

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    • Posted

      Question Suzired, do you have H-Pylory/Ulcers?  SIBO? Gastritis?  Any of these conditions will give you pain if you take Betaine/Pepsin? I'm going up to 6 today, but now I'm a little concern because I did show no H-pylori/Ulcers, but that was 10 months ago. ;-(  Sure, I have no pain so I do not believe I have this. ;-)

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    • Posted

      Thanks very much for your input!  It's amazing how this thing can take over your life. 

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    • Posted

      I don't have H-Pylory bacteria, ulcers or SIBO, but do have gastritis. I read that you shouldn't take Betaine if you have ulcers - it will make them worse. Also heard of others, who have taken 10 pills per meal, but I would be very wary of that many...can't be good for your system! If you have no pain, you might have "silent reflux"...

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    • Posted

      Right, I have gastritis as well.  Up to 6 pills, did feel strange (slightly warm) so I'm stopping at 6 pills.  Now, during the Heidelberg test he gave me 2 with an empty stomach and for sure I was burning so I do feel the burning on these pills. I could try 7, but 6 did give me a slight warm feeling so will stay at 6 for now and maybe even go down to 5 after I do a 2nd test tomorrow.  I do believe I have silent reflux, and ENT did say it was irritated so he assumes is reflux, I do have nasal breathing problems as well and is not congestion.

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    • Posted

      What is the 2nd test you're having done tomorrow?

      I also have sinusitis for months, but my ENT did not find anything! And I have no congestion or runny nose. He gave me a couple of nose oils, but NO cortisone or other medicinal sprays, which would inflame the dry mucous membranes in the nose! In researching this I read that it could also be caused by candida albicans or aspergillus - forms of yeast infections! My goodness! I took Fluconazole, but it did not get rid of my sinusitis. Don't know what else to do about it! If you find any remedies, please let me know!

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    • Posted

      No, I was just saying I will test and see if I get slightly hot with the Betaine/Pepsin and decide to continue with 6, or go down to 5.  I have sinuses as well, but what ever I have on my nose is not that and for sure can be silent reflux. ENT did find irritation which is a sign of reflux. But it could be bile reflux as well. ;-(  
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  • Posted

    Right, please check the problem is not low acid which also causes reflux.  Just like you PPI's did not help me so I took the Heidelberg reflux test and yes, I was low in acid.  Right now I'm taking Betaine/Pepsin to normalize stomach acid, so far can't tell you much because I jst started 9 days ago. People continue to take PPI's like candy which is a BIG mistake in my opinion.  If you are over 50 you probably have low acid which will keep the valve open allowing to reflux.  Is so sad how GI's continue to mislead many of us. ;-((( God bless!

     

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