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
flowerqueen
Posted

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
GottaSki
Posted

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
bartfull
Posted

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
w8in4dave
Posted

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
flowerqueen
Posted
  • Author

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
flowerqueen
Posted
  • Author

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
flowerqueen
Posted
  • Author

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
bartfull
Posted

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
powerofpositivethinking
Posted

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
GottaSki
Posted

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
luvs2eat
Posted

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
Ninja
Posted

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
w8in4dave
Posted

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
flowerqueen
Posted
  • Author

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
flowerqueen
Posted
  • Author

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
flowerqueen
Posted
  • Author

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
flowerqueen
Posted
  • Author

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
mopsiecat
Posted

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
flowerqueen
Posted
  • Author

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
flowerqueen
Posted
  • Author

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
GottaSki
Posted

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
Ninja
Posted

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
dilettantesteph
Posted

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
flowerqueen
Posted
  • Author

Thanks! I will. :)

flowerqueen Community Regular
flowerqueen
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,962
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.