2 weeks off PPIs...mixed bag

[SparklyUnicorn]

I don"t know.  I mean certainly things are better than when I tried to go off several months ago.  I have some days with no heartburn and some days with bad heartburn.  Some days the Zantac took care of it and other days Zantac barely took the edge off.  Night time is mostly ok. 

 

I still feel like I want to give it longer.  So I will.  Just wish I knew if I had any shot in the heartburn mostly going away.  Or if I could do something to help things along.  I've done everything right up until this point (lost weight, gave up certain foods, etc.).  I'm now less than 10 pounds overweight so while I'm still working at that, I cannot imagine that making some sort of huge difference. 

 

So then I guess my question is whether my body is just kinda messed up still from Prevacid and needs more time?  I don't know.  I don't like my doctor.  He has not been particularly helpful and if I go back I plan to find a different doctor.  Most of what he has done is guess what my situation is.  They are extremely disorganized over there and I worry about them messing stuff up so no I won't go back to him.

 

I read a ton of conflicting stuff on the internet so I hesitate to try anything too weird.  (Please don't suggest apple cider vinegar....tried that it's terrible!)

 

If I ask 10 people I get 10 different answers.  Which is kinda weird since this problem seems to be so common. 

 

 

[zoobie]

A friend of mine was just raving on FB that she did a Whole 30 and added things back in slowly and discovered that dairy was bothering her. She's been off dairy since January and doesn't need PPI or allergy meds for pollen. She's not into "woo" medicine, fwiw. It was just a January challenge at her office that led her to discover the dairy issue.

[SparklyUnicorn]

Well, I eat low carb.  I won't say I never do dairy, but very little dairy. 

 

The fact it is so much better leads me to believe it's not a specific food because I am a creature of habit when it comes to food.  KWIM?  Heck, there are days where I swear water is the problem.  Honestly, water can make it worse for me.  Which, ya know, I can't stop drinking water!

 

It's tolerable even on the worst day so far, BUT I am a little concerned about having acid coming up.  That can't be good for my body or my teeth long term.  So annoyance aside, I don't want to cause other problems either. 

 

 

 

 

[HeWillSoar]

I'm sorry! I can't get off my PPI either.  I tried to half my dose and did ok for a few weeks but then it was back to the sore throat.  I don't even get heartburn so it really sneaks up on me.  And it makes me afraid that it's going to lead to something worse so back on the PPI I go.  :crying:

[catz]

I was on PPI's for a long time.  I also had symptoms of irritable bowel.  I take a probiotic daily and ground flax in a little OJ/water combo every morning and I thought it would help the irritable bowel, but I rarely have ANY problems at all since starting that combo and it's been years.  Regular exercise/clean diet help too.  And I can eat almost anything, but high sugar over time starts to turn things for the worse.  I do dairy, wheat, etc.

[SparklyUnicorn]

So long as there isn't a physical problem with the valve at the base of the esophagus, I really have to think that it's what is being consumed. I would continue to try different foods in order to get a large enough pool of choices that are pretty much safe for you. It's very individual.

 

I was on prescription PPI and was assured by my doctor that there was no danger in taking it long term. I now don't think that advice was true, so I'm really motivated to find what works, naturally, for me. I do have concern, though, that the acid that does occur is damaging my esophagus.

 

I'm thinking that it's okay to take OTC PPI for two weeks, but no closer together than three months. You could try taking it for two weeks, four times a year, and in between time, work on your food choices. Or, just do what you're doing and give it a year or two.

 

That is what irritates me.  He didn't check that.  The dx was hiatal hernia or GERD.  Yes apparently there is a code that is this or that.  I was under the impression he checked it via the ultrasound.  Nope.  It's apparently one of these things where they just assume it's one or the other and treat and whatever you respond to you respond to and that's that?!  Really I have no idea. 

 

I've tried some food eliminations and I cannot figure anything else out.  I tried eating an extremely bland diet for awhile and that didn't lead to anything either.  

 

I think I will just give it some more time.  A lot of stuff I've done to make changes didn't lead to changes as quickly as I assumed they would.  Like exercise.  That's supposed to make you feel good in general right?  I felt like crap for a good six months.  I mean really really awful and terrible and bad and I don't know how I didn't give up.  But now I feel great in that department.  It took a very long time though! 

 

So I don't know what was with his magical 2 weeks.  What can I know it 2 weeks?  If it was that bad then yeah I would have been back on the Prevacid already.  So I am a little hopeful there.

Sorry, I guess I'm rambling here. 

 

[SparklyUnicorn]

I was on PPI's for a long time.  I also had symptoms of irritable bowel.  I take a probiotic daily and ground flax in a little OJ/water combo every morning and I thought it would help the irritable bowel, but I rarely have ANY problems at all since starting that combo and it's been years.  Regular exercise/clean diet help too.  And I can eat almost anything, but high sugar over time starts to turn things for the worse.  I do dairy, wheat, etc.

 

I was convinced for awhile I had IB too.  Definitely had tons and tons of symptoms.  But now all of that is gone.  Which of course I'm thrilled by!

[HeWillSoar]

I do know that gluten makes it worse for me.  I will get all the symptoms of going off my PPI if I eat gluten too many times. 

[SparklyUnicorn]

I do know that gluten makes it worse for me.  I will get all the symptoms of going off my PPI if I eat gluten too many times. 

 

I eat zero gluten.

 

Really all of the typically offending stuff I either do not ever (or rarely) eat or eliminating it didn't make a difference.

 

So of course I suppose that could mean I have a hernia.  And with that there wouldn't be a damn thing I could really do about it.

[wintermom]

This may be no help whatsoever, but my dr finally just said that some of these symptoms over time are simply "growing old."  If you are exercising regularly, not drinking too much, not smoking and of a healthy weight, and there's no physical condition, it may simply be a matter of tweaking the food and drink combinations to see what works for you. You may never be symptom-free for the rest of your life. It may just be one of the growing things to deal with as we get older. 

 

I'm in the same boat, though at the beginning end of the diagnosis journey. ;) I think I've just been "blessed" with the family weak bowels.  :cool:  I've got a ds in the same boat. I feel a lot worse for him, as he's so young to have to deal with this stuff.

Edited May 12, 2017 by wintermom

[SparklyUnicorn]

This may be no help whatsoever, but my dr finally just said that some of these symptoms over time are simply "growing old."  If you are exercising regularly, not drinking too much, not smoking and of a healthy weight, and there's no physical condition, it may simply be a matter of tweaking the food and drink combinations to see what works for you. You may never be symptom-free for the rest of your life. It may just be one of the growing things to deal with as we get older. 

 

I'm in the same boat, though at the beginning end of the diagnosis journey. ;) I think I've just been "blessed" with the family weak bowels.  :cool:  I've got a ds in the same boat. I feel a lot worse for him, as he's so young to have to deal with this stuff.

 

I don't know.  Growing old, I've had this problem since I was in my early 20s.  The symptoms are definitely growing old, but not necessarily from growing old!  LOL

 

My 15 year old has had issues since he was born.  He takes a Pepcid AC almost daily.  He was on Zantac as an infant. 

 

There is improvement so I am convinced I've done some stuff right.  I tried to go off the stuff many months ago and that was impossible.  So this is not at least. 

 

[wintermom]

I don't know.  Growing old, I've had this problem since I was in my early 20s.  The symptoms are definitely growing old, but not necessarily from growing old!  LOL

 

My 15 year old has had issues since he was born.  He takes a Pepcid AC almost daily.  He was on Zantac as an infant. 

 

There is improvement so I am convinced I've done some stuff right.  I tried to go off the stuff many months ago and that was impossible.  So this is not at least. 

 

 

That's awesome you're experiencing some improvement! It's certainly better than the opposite. We gotta celebrate small successes, right!  :laugh:

[SparklyUnicorn]

That's awesome you're experiencing some improvement! It's certainly better than the opposite. We gotta celebrate small successes, right!  :laugh:

 

definitely!

[Laura Corin]

That is what irritates me.  He didn't check that.  The dx was hiatal hernia or GERD.  Yes apparently there is a code that is this or that.  I was under the impression he checked it via the ultrasound.  Nope.  It's apparently one of these things where they just assume it's one or the other and treat and whatever you respond to you respond to and that's that?!  Really I have no idea. 

 

 

The doctor didn't use a scope to look down your throat?  Both Husband and I were scoped when we went in with suspected GERD.

 

[SparklyUnicorn]

Here's what I mean by it being individual. If I eat cheese that's been cut off of or shredded off of a block/bar, I'm okay. If I eat pre-shredded cheese, whoa boy. If I eat yogurt, I'm okay. If it's Yoplait, then it's terrible heartburn.

 

I'm just about done eating restaurant preparred Chinese and Mexican food. If I make Mexican at home (shredding my own cheese) I'm okay. Chinese even at home? Nope.

 

A year ago, fried eggs gave me heartburn. I was like, are you kidding me? Then I visited family this year, and they served eggs every morning, so I ate them but never had heartburn. So, I tried them at home again, and it's no problem. I don't understand it, but whatever.

 

So far, chocolate is good every time. :)

 

LOL

Well that's just it.  Sometimes I'll eliminate something that I suspect and it seems to help.  I'll go along great.  Then boom, not great.  No difference.  I eat the thing again...no problems for awhile.  So there seems to be no rhyme or reason.  Of course some stuff CLEARLY is problematic.  Like soda.  i don't drink soda anymore.  I never drank it a lot, but my go to thing when I take my kids to a fast food joint is a diet soda because there is often nothing on the menu I will eat.  So I sit there with the diet soda as a treat and boom nasty heartburn.  So yeah I no longer do that. 

 

I think I need to just give it a bit more time.  I do feel like I'm mostly on the right track.  If I had a less lazy doctor, he could do some better tests to determine if going off PPIs is possible/ideal.  So if things don't improve I will find another doctor and ask them to do those tests. 

 

[SparklyUnicorn]

The doctor didn't use a scope to look down your throat?  Both Husband and I were scoped when we went in with suspected GERD.

 

 

Nope

 

He told me the scope is to check for cancer.  He didn't schedule one.  He did an ultrasound (well the ultrasound tech did one) and various blood tests. 

[Jean in Newcastle]

Water can make things worse because the acid will float in top, and then you feel it more. On those days I mix some baking soda in my water.

 

Pre-shredded cheese is coated in cellulose.

 

MSG in Chinese food can cause heartburn.

 

 

Sent from my iPhone using Tapatalk

[SparklyUnicorn]

Water can make things worse because the acid will float in top, and then you feel it more. On those days I mix some baking soda in my water.

 

Pre-shredded cheese is coated in cellulose.

 

MSG in Chinese food can cause heartburn.

 

 

Sent from my iPhone using Tapatalk

 

I rarely eat Chinese food.  Or heck I rarely go out to eat anymore.  I make nearly everything I eat from scratch. 

 

What's the deal with cellulose?   I eat some shredded cheese sometimes. 

 

[Anne]

Nope

 

He told me the scope is to check for cancer. He didn't schedule one. He did an ultrasound (well the ultrasound tech did one) and various blood tests.

I'm confused that he didn't do the scope - isn't esophageal cancer one of the biggest risks associated with long-term GERD?

 

I am glad to hear that you've had some improvement in your symptoms.

 

Anne

[SparklyUnicorn]

I'm confused that he didn't do the scope - isn't esophageal cancer one of the biggest risks associated with long-term GERD?

 

I am glad to hear that you've had some improvement in your symptoms.

 

Anne

 

It is, but it is also incredibly rare.  He said he wants to "eventually do one".  Whatever.  He's lousy.

[Lawana]

Have you tried Betaine HCl with pepsin? Comes in capsules. Sometimes the reflux/GERD issues are caused by *lack* of adequate stomach acid.

 

ETA. Tried to add link but not working. Google Chris Kresser heartburn

Edited May 12, 2017 by Lawana

[HSmomof2]

I haven't tried weaning off my PPI's yet because I still need to get my weight down more. Though from what I've read about it, the rebound acid can last 3-6 weeks. It's possible that's what you're still experiencing. Hopefully it will improve over the next couple weeks.

[prairiewindmomma]

I am surprised he didn't offer a scope or capsule or acid study either. You are symptomatic, it's long-standing, and hernias are repairable.

[SparklyUnicorn]

I haven't tried weaning off my PPI's yet because I still need to get my weight down more. Though from what I've read about it, the rebound acid can last 3-6 weeks. It's possible that's what you're still experiencing. Hopefully it will improve over the next couple weeks.

 

Ok this gives me some hope.  Nothing seems to happen as quickly as I imagine it should, but I do want to give it enough time and this sounds reasonable to me.

[SparklyUnicorn]

I am surprised he didn't offer a scope or capsule or acid study either. You are symptomatic, it's long-standing, and hernias are repairable.

 

The practice seems to be incredibly disorganized. I mean heck they didn't even call me back for the first follow up after saying they would.  They said they don't schedule out that far so they wouldn't let me just make the follow up at that time after the first visit.  Their idea of "far" is 2 months.  Two months?  Who doesn't schedule out for 2 months?! 

 

Then when I finally got in he didn't have the information about me in front of him so instead of getting off his duff to get my file he was asking me to tell him what was up.  He contradicted what he told me the first time.  And then for some other odd reason he had a bunch of incorrect information about me.  Like not only did he not have the information about my weight loss, last time I was there he had me listed as several pounds underweight.  LOL  I mean geesh and I'm supposed to trust these people to touch me with scopes and stuff?  No thank you.

 

But the other place in the area sounds as crazy based on what an acquaintance I know said about that place (because I'm looking for a new practice). 

 

My plan is to wait at least another month to see if things improve.  If not, I will look for a new place or call them and tell then exactly what I want from them. 

[StephF]

Long story short, HB was my life a year ago. So.Much.Pain. Bought the book, "Dropping Acid" by Jamie Koufman (and her other one), and it changed my life. I followed the diet for 2-weeks and all of my heartburn went away (this was after I took Prilosec for 2 weeks 2 months earlier and it made my problem worse!). I was eating tons of fruit at this time and of course all of the fruits I was eating was causing my hb. Now a year later, totally heartburn free. I'm on a low FODMAP diet for other digestive issues and that is working tremendously too.

[Laura Corin]

Long story short, HB was my life a year ago. So.Much.Pain. Bought the book, "Dropping Acid" by Jamie Koufman (and her other one), and it changed my life. I followed the diet for 2-weeks and all of my heartburn went away (this was after I took Prilosec for 2 weeks 2 months earlier and it made my problem worse!). I was eating tons of fruit at this time and of course all of the fruits I was eating was causing my hb. Now a year later, totally heartburn free. I'm on a low FODMAP diet for other digestive issues and that is working tremendously too.

The diet worked for me with globus but not at all with husband who has more issues.

[SparklyUnicorn]

The diet worked for me with globus but not at all with husband who has more issues.

 

What is globus?

 

I eat fairly closely to what most of these diets say already.  There has been improvement.  Nothing super profound and magical though.

 

I haven't declared it a complete failure yet though.  Little disgusted with the doctor, but GI docs seem to be wildly popular and they have too many patients or something. 

[Laura Corin]

What is globus?

 

I eat fairly closely to what most of these diets say already. There has been improvement. Nothing super profound and magical though.

 

I haven't declared it a complete failure yet though. Little disgusted with the doctor, but GI docs seem to be wildly popular and they have too many patients or something.

Globus is the feeling that you have something in your throat that you can't swallow. Mine went away after a couple of weeks on the diet and hasn't come back despite not following the diet any more.

[SparklyUnicorn]

Globus is the feeling that you have something in your throat that you can't swallow. Mine went away after a couple of weeks on the diet and hasn't come back despite not following the diet any more.

 

Ah.  Yes I had that.  Don't have it now thankfully.

 

In fact, when I first went on PPIs it was for that.  I thought something was stuck in my throat. I didn't have heartburn hardly ever.  Just thought something was literally stuck.  A doc prescribed PPIs and I swear it has been downhill since then. 

[Laura Corin]

Ah. Yes I had that. Don't have it now thankfully.

 

In fact, when I first went on PPIs it was for that. I thought something was stuck in my throat. I didn't have heartburn hardly ever. Just thought something was literally stuck. A doc prescribed PPIs and I swear it has been downhill since then.

I wasn't put on PPIs for that, just had a diet change recommended.

[SparklyUnicorn]

I wasn't put on PPIs for that, just had a diet change recommended.

 

What's frustrating is here they just seem to prescribe drugs.  They don't even barely look at you. 

 

Which wouldn't be so terrible if some of those drugs didn't have lousy side effects.  I'm concerned about being on them long term. 

[Tap]

I would assume it would take a month or more, for your body to regulate your stomach acid on its own, especially since you are still using Xantac.

Do you take any medicines that affect the stomach like NSAIDS (motrin/advil/ibuprofen) or vitamins/herbs?

 

Do you have an option to see a GI specialist?

 

Edited May 13, 2017 by Tap

[SparklyUnicorn]

I would assume it would take a month or more, for your body to regulate your stomach acid on its own, especially since you are still using Xantac.

Do you take any medicines that affect the stomach like NSAIDS (motrin/advil/ibuprofen) or vitamins/herbs?

 

Do you have an option to see a GI specialist?

 

I take an allergy pill as needed, but nothing else. 

 

The guy I saw was a specialist. 

 

But I agree 2 weeks is probably not enough time.  I toyed with the idea of not taking Zantac at all.  I wonder if it is slowing things down or making it worse.  Maybe I'll try it. 

 

One thing that definitely indicates to me that things are better is nighttime.  Before that was the worst time.  I have no trouble at night at all.  So that is a huge improvement right there. 

[tori@thehomefront]

I had heartburn that we eventually figured out was caused by snoring. Stopped the snoring and stopped the heartburn. Except, the doc put me on a PPI before we figured out the real cause, and it helped for a couple weeks, then the hb came back. So he wanted to put me on a second PPI in addition to the first. I had researched enough on my own by then to decline and figure out how to stop the real cause, but it took more than a month of weaning off the PPI and enduring significantly terrible hb before my body readjusted to not having the PPI eliminating my stomach acid, FWIW. Hope you get some relief soon, OP.