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

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.