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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    2. - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    3. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    4. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,841
    • Most Online (within 30 mins)
      7,748

    Julia Duffee
    Newest Member
    Julia Duffee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
×
×
  • 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.