Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Acid Reflux And Ppi's


flowerqueen

Recommended Posts

flowerqueen Community Regular

Hi everyone,

 

I was diagnosed Celiac disease about 2 & 1/2 years ago, but even before that had bad problems with acid reflux. I have been taking a PPI (Proton Pump Inhibitor) for about 5 years, maybe longer.  However, recently, it stopped helping my problem.  I wake in the night with burning acid in my throat and mouth. I have been having problems with my throat since late October 2013 and have seen 4 doctors, (5 appointments), it seems my throat has blisters caused by the reflux.  In short, I had my PPI increased, but this didn't help, so I asked if I could change PPI to one I had had pre-celiac.  Doctor changed the tablet and increased dosage to 40mg.  My stomach felt like a ball of fire, as did my throat and after 3 days, decided I couldn't tolerate it (I realised afterwards the new tablet contained lactose - I'm dairy intolerant).

 

I have read a lot recently on-line about PPIs actually making the problem worse, and a lot of people with acid reflux actually have low acid, not the other way round.  I am keen to find out other sufferers experiences as well as needing to go back to my doctor.  This morning I woke with fire in my throat and my tongue also seems burned; it is so painful.   I considered taking Apple Cider Vinegar but have read you shouldn't take it if you have high blood pressure and taking diuretics.

 

Can anyone help please? 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

My son had GERD that was misdiagnosed as Asthma because he was aspirating acid into his lungs each night causing chronic cough.  They finally diagnosed GERD, but then trialed every PPI available for several years and none helped. 

 

When I was finally diagnosed with Celiac, we finally found that his "gerd" was a symptom of Celiac for him.  I researched the "low acid" rather than high acid issue and found that folks with this issue can improve by supplementing with HCl rather than treating with drugs to prevent acid.

 

We used Betaine HCl for his first year or two gluten-free...he improved very slowly, but did improve.  He rarely wakes with his "smoker's cough" and when he does he goes back to supplementing with HCl.

 

It is suggested that you start with one tablet about an hour after each meal.  If you have a strong acid reflux while trialing this method...too little stomach acid may not be the issue.

 

Often a combo of digestive enzymes before meal and HCl after meal can be even more helpful...if you decide to try this, I would trial HCl first to keep your experiments clean.

bartfull Rising Star

But you also need to WEAN yourself off the PPI. If you go cold turkey you will get LOTS worse. (I don't have GERD, but I have a friend who does.)

w8in4dave Community Regular

I have GERD but I am not sure what PPI is. I take pills for it and it seems to help me. Heck I was taking two pills a day for it I am down to 1 a day, if I forget to take the 1 pill it will come back and bite me! Seems going Gluten free, and Corn free has helped mine alot. 

flowerqueen Community Regular

I have GERD but I am not sure what PPI is. I take pills for it and it seems to help me. Heck I was taking two pills a day for it I am down to 1 a day, if I forget to take the 1 pill it will come back and bite me! Seems going Gluten free, and Corn free has helped mine alot. 

Hi w8in4Dave,

 PPI is a proton pump inhibitor which you take each morning on an empty stomach, which is supposed to suppress acid.  Unfortunately, it has stopped working.  There a number of theories as to why that should be.  To begin with, after going gluten free it helped, but sadly this is no longer the case for me. :(

flowerqueen Community Regular

But you also need to WEAN yourself off the PPI. If you go cold turkey you will get LOTS worse. (I don't have GERD, but I have a friend who does.)

Hi Barftull,

 

I had already stopped taking my PPI when I realised that I shouldn't go 'cold turkey', perhaps this is what has happened.  It is too late now, and I'm not keen to go back on them as I've heard of people having so many problems with them.  I wonder if I should just sit tight and see if things improve.  I am taking a non-dairy/no gluten/no wheat probiotic at the moment, to see if that will balance the flora in my stomach.

flowerqueen Community Regular

My son had GERD that was misdiagnosed as Asthma because he was aspirating acid into his lungs each night causing chronic cough.  They finally diagnosed GERD, but then trialed every PPI available for several years and none helped. 

 

When I was finally diagnosed with Celiac, we finally found that his "gerd" was a symptom of Celiac for him.  I researched the "low acid" rather than high acid issue and found that folks with this issue can improve by supplementing with HCl rather than treating with drugs to prevent acid.

 

We used Betaine HCl for his first year or two gluten-free...he improved very slowly, but did improve.  He rarely wakes with his "smoker's cough" and when he does he goes back to supplementing with HCl.

 

It is suggested that you start with one tablet about an hour after each meal.  If you have a strong acid reflux while trialing this method...too little stomach acid may not be the issue.

 

Often a combo of digestive enzymes before meal and HCl after meal can be even more helpful...if you decide to try this, I would trial HCl first to keep your experiments clean.

Hi Lisa,

That sounds awful, I hope it didn't do any damage to his lungs.  

 

I am already taking a probiotic (almost a week since I started a new course). Is HCL the hydrochloric acid tablet I've been hearing about? i will have to check to see if I can obtain it in UK. 

During the course of my first endoscopy I was told I had a hiatus hernia, so I'm thinking this could be the cause of the reflux although recently I have been taking Baclofen for severe muscle spasms in my upper back and it seems to have relaxed my stomach/intestinal muscles as well, and am waiting to see a consultant at the hospital, so hopefully, they will prescribe something different to what my doctor at the surgery has prescribed.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bartfull Rising Star

I saw this article about how to get off PPI's. Maybe it'll help, even though you've already quit. As a matter of fact, they say if you go off them suddenly and then go back on them you could have even worse problems!

 

Open Original Shared Link

powerofpositivethinking Community Regular

hi flowerqueen,

 

I was diagnosed with GERD and a medium sized hiatal hernia during my endo.  When I went gluten-free my reflux got a lot better.  

 

I did read a fantastic book called Why Stomach Acid is Good for You and would definitely recommend it!!  This book had a lot of good reasons to stay away from PPIs and more natural remedies to help digestion.

 

Open Original Shared Link

GottaSki Mentor

Hi Lisa,

That sounds awful, I hope it didn't do any damage to his lungs.  

 

I am already taking a probiotic (almost a week since I started a new course). Is HCL the hydrochloric acid tablet I've been hearing about? i will have to check to see if I can obtain it in UK. 

During the course of my first endoscopy I was told I had a hiatus hernia, so I'm thinking this could be the cause of the reflux although recently I have been taking Baclofen for severe muscle spasms in my upper back and it seems to have relaxed my stomach/intestinal muscles as well, and am waiting to see a consultant at the hospital, so hopefully, they will prescribe something different to what my doctor at the surgery has prescribed.

 

His lungs are not perfect...but are much improved.  Thanks.

 

Yes, HCl is Hydrochloric Acid.

 

Good luck to you :)

luvs2eat Collaborator

I was on Protonix for several years... and then I lost 20 lbs. and my GERD disappeared. Dunno if that applies, but it was a game changer for me!

Ninja Contributor

I definitely second GottaSki's recommendation. PPI's did not work for my GERD, either. I just recently started taking Betaine HCL and digestive enzymes (Digest Spectrum by enzymedica) with meals. I've noticed a significant difference thus far! 

 

Best wishes,

Ninja :)

w8in4dave Community Regular

Hi w8in4Dave,

 PPI is a proton pump inhibitor which you take each morning on an empty stomach, which is supposed to suppress acid.  Unfortunately, it has stopped working.  There a number of theories as to why that should be.  To begin with, after going gluten free it helped, but sadly this is no longer the case for me. :(

TY :) 

flowerqueen Community Regular

His lungs are not perfect...but are much improved.  Thanks.

 

Yes, HCl is Hydrochloric Acid.

 

Good luck to you :)

Pleased he's made progress though. 

Thanks. I need it :)

flowerqueen Community Regular

I was on Protonix for several years... and then I lost 20 lbs. and my GERD disappeared. Dunno if that applies, but it was a game changer for me!

I've lost weight as I have not been eating fatty or sweet things, as they seem to make the reflux worse. I think the medicine I take for severe back spasm in upper back could be responsible as they are a muscle relaxant, and it's relaxing muscles I don't need relaxing as well as the ones i do.

:rolleyes:

flowerqueen Community Regular

I definitely second GottaSki's recommendation. PPI's did not work for my GERD, either. I just recently started taking Betaine HCL and digestive enzymes (Digest Spectrum by enzymedica) with meals. I've noticed a significant difference thus far! 

 

Best wishes,

Ninja :)

Yes, I think I need to try some of these.  I know it sounds silly, but the name of them puts me off.  It sounds like something that would make your acidity worse.  :unsure:. I understand though, that the older you get the less acid you have naturally present in your stomach.

flowerqueen Community Regular

hi flowerqueen,

 

I was diagnosed with GERD and a medium sized hiatal hernia during my endo.  When I went gluten-free my reflux got a lot better.  

 

I did read a fantastic book called Why Stomach Acid is Good for You and would definitely recommend it!!  This book had a lot of good reasons to stay away from PPIs and more natural remedies to help digestion.

 

Open Original Shared Link

Thanks! I will definitely have a look at that. Sounds interesting.

mopsiecat Rookie

Hi everyone,

 

I was diagnosed Celiac disease about 2 & 1/2 years ago, but even before that had bad problems with acid reflux. I have been taking a PPI (Proton Pump Inhibitor) for about 5 years, maybe longer.  However, recently, it stopped helping my problem.  I wake in the night with burning acid in my throat and mouth. I have been having problems with my throat since late October 2013 and have seen 4 doctors, (5 appointments), it seems my throat has blisters caused by the reflux.  In short, I had my PPI increased, but this didn't help, so I asked if I could change PPI to one I had had pre-celiac.  Doctor changed the tablet and increased dosage to 40mg.  My stomach felt like a ball of fire, as did my throat and after 3 days, decided I couldn't tolerate it (I realised afterwards the new tablet contained lactose - I'm dairy intolerant).

 

I have read a lot recently on-line about PPIs actually making the problem worse, and a lot of people with acid reflux actually have low acid, not the other way round.  I am keen to find out other sufferers experiences as well as needing to go back to my doctor.  This morning I woke with fire in my throat and my tongue also seems burned; it is so painful.   I considered taking Apple Cider Vinegar but have read you shouldn't take it if you have high blood pressure and taking diuretics.

 

Can anyone help please?

I have hiatus hernia, maybe different than what you have, but anyway I weaned myself off the PPIs, watched my diet closely, used gaviscon for a while but don't find that helps much. Now I use baking soda with excellent results. At the first sign I discomfort I take 1/2 teaspoon baking soda I a glass of water and that takes care of the symptoms fast. I do rally watch what I eat though and sleep elevated on a wedge. Hope this helps.

flowerqueen Community Regular

I have hiatus hernia, maybe different than what you have, but anyway I weaned myself off the PPIs, watched my diet closely, used gaviscon for a while but don't find that helps much. Now I use baking soda with excellent results. At the first sign I discomfort I take 1/2 teaspoon baking soda I a glass of water and that takes care of the symptoms fast. I do rally watch what I eat though and sleep elevated on a wedge. Hope this helps.

Yes,  thanks.  I also find liquid gaviscon type mixture of little use too.  I've resorted to using baking soda too in the last few days.  I got my husband to elevate our bed at the top.  He put it on blocks of wood, which have gradually got higher, to try and help.  

flowerqueen Community Regular

Thanks for all your replies.  Does anyone take Baclofen, and if so, has it made their acid reflux worse?  I may also post this as a separate thread if that's allowed?

GottaSki Mentor

Thanks for all your replies.  Does anyone take Baclofen, and if so, has it made their acid reflux worse?  I may also post this as a separate thread if that's allowed?

 

of course it is allowed...it is actually a good idea when asking something specific....post away!

 

Happy Friday :)

Ninja Contributor

Yes, I think I need to try some of these.  I know it sounds silly, but the name of them puts me off.  It sounds like something that would make your acidity worse.  :unsure:. I understand though, that the older you get the less acid you have naturally present in your stomach.

I totally understand! I was hesitant to try the Betaine HCL myself out of fear that it would make the pain and symptoms worse. Thankfully that has not been the case! I started off taking just one tablet even though the bottle said to take two; eventually I worked up to two, which has been helpful for me. :) Keep us posted!

dilettantesteph Collaborator

My son has GERD as a glutening symptom.  Several medications didn't help.  A careful gluten-free diet did.  I hope that you find the right answer for you.

flowerqueen Community Regular

Thanks! I will. :)

flowerqueen Community Regular

I will have a look into it. As I've heard some good reports since researching the HCL. Thanks :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

    2. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    3. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    4. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

    5. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      yes i do take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.