Getting rid of PPIs (acid blockers)

pogoman

Senior Member
Messages
292
I assume you mean the gaviscon advanced, the stuff from the U.K. Yes, I’ve tried it several times, but it causes me horrendous cramping and gas. I wonder if the alginates feed something. I think it’s a great product but I can’t use it.

Its the Gaviscon Extra Strength liquid form, I keep a bottle of it in the fridge for any nighttime reflux.
Those are rare now, the bottle has lasted so long that its expiration date is next month so I will buy a new one soon :D
 
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(This is something I posted in a different forum a while ago. It might be of interest here too.)

If you take PPIs, you might get relief by dropping them. I did it, it wasn't easy, and I'd like to share. Sorry if it's a long read. (Also note that things may be different for you of course.)

It appears that there are a lot of negative long-term effects from taking PPIs. They are among the most prescribed drugs in the industrialized countries as they were considered safe for a long time, but recently there have been studies linking PPIs to significantly higher chances of getting dementia, cardiovascular diseases, anemia, pneumonia, osteoporosis and more. Some of these claims have yet to be validated by larger studies, but I met several (medical) doctors who advised me to get off this stuff, urgently. Basically, there seem to be only minor short-term side effects (like nausea, headaches, insomnia) when starting the medication, but all hell breaks lose if you take them for decades.

Why are PPIs bad?
=================
There is a pretty solid connection between PPIs and ME/CFS.

1. There are many older studies noting PPIs lead to reduced uptake of vitamin B12 and iron. Hey, do I even have to go on? All right, just for you. (I admit that there are conflicting results and/or opinions. But most of the studies with conflicting results seem to consider only shorter timeframes, which is not sufficient to develop a B12 deficiency as our liver can store B12 supplies for up to 7 years, and the uptake does not go down all the way to zero.) But as mentioned above, there seems to be a wide range of chronic diseases associated with PPIs. The problem is that we need stomach acid to break down the nutritients in our gut - if we reduce the acid permanently, we get reduced uptake of a wide range of other vitamins and minerals.

2. There is some recent evidence that the proton-pump inhibitors inhibit not only the proton pumps responsible for stomach acid, but also in the mitochondria that are responsible for creating energy in your body, which may lead to long-term fatigue and other damage. (Blocking proton pumps in mitochondria may lead to increased ROS levels, reactive nitrogen species, some of which are toxic and permanently damage the mitochondrial DNA.)

3. Normal stomach acid is required to kill off "bad" bacteria, as your stomach is the first line of defense against them. Reduced stomach acid is associated with more unwanted bacteria in our gut (most famously helicobacter, but there are thousands of species at work here) - and in term reduced numbers of "good" bacteria, the ones breaking down the food, because bacteria compete for space in your gut. Throw in our modern-day diet containing a lot of wheat and corn products, alcohol, fertilizers, insecticides and antibiotics, we can damage our microbiom severely, which eventually leads to leaky gut. Leaky gut is associated with heartburn, and we have a vicious cycle: Reduce the acid even more due to the heartburn -> worsen the microbiom/leaky gut -> more heartburn.
<.....>

5. I still had some heartburn, but after some time I noticed another pattern. I didn't get heartburn after every meal, and sometimes I didn't get any heartburn after consuming stuff among the usual suspects (sugar!). But after cutting the Ranitidine I got heartburn only after eating certain selected foods. As I just had read one of Steven Gundrys books, I realized that - indeed - most of the food that he advises to avoid does cause heartburn for me. For example, I can eat all the macadamias, walnuts or almonds I want, but peanuts or cashews will give me immediate heartburn even though the nutritional makeup is similar. (Peanuts are legumes, cashews are seeds, both are not nuts in a botanical sense and contain lectins.) So even though I disagree with Gundry on a number of subjects, I think he has a point that I should avoid lectins. He claims that everybody should avoid lectins, but I think that the dose makes the poison, and we have different tolerance levels to different food. So I believe this is highly individual. It doesn't hurt to avoid all lectins for a while just to see what it can do for you, though.
If you want to know more, Gundry explains lectins on his website (https://drgundry.com/lectin-guide) and has a downloadable "go/no-go" list for the diet he suggests. His most recent book "the longevity paradox" excels at explaining the theory and biochemical aspects behind the microbiom and leaky gut, citing a lot of scientific research. However, some of his conclusions and dietary suggestions are controversial, and his claim that he can cure almost every chronic disease with his diet is ridiculous. But I would still recommend his book, if you read it with a grain of salt.

As of today (more than half a year after taking my last dose of ranitidin), I'm avoiding some food completely and eat other stuff only in moderation, and I'm doing fine. I even take betain HCL to increase my stomach acid, as my stool test says that my acid is low. I still get the occasional heartburn, maybe once a week. I don't take any medication though, and I do take notes what I ate before I got heartburn. I'm certain that I'll eventually figure out a few more things that I need to avoid. I can eat some lectin containing veggies ( zucchini, cucumber), I have to cook others (tomatoes, legumes), and I have to avoid others completely (peppers).

<........>


Final words
===========
I never thought about leaky gut because I had none of the symptoms usually associated with it - all I had was some heartburn, and according to my doctors this came from a hiatus hernia and there was no other way to treat it except with PPIs, after the surgery option was exhausted. Turns out they were wrong. But LG as cause explains perfectly why the heartburn came back after surgery, after all the surgery didn't fix the real problem.

There is a blood test for leaky gut, it's called zonulin (you might want to look for a laboratory closer to your home than this one here, but it's where I went and has some excellent information on this: https://www.imd-berlin.de/en/subjec...lin-a-serum-marker-as-proof-of-leaky-gut.html).


Wow so much. I am so glad to see this!

I was on PPI's or other stomach acid reducers for something like 15 years. I think that destroyed my gut lining and now I have to follow Dr. Steven Gundry's diet methods rigorously or else get all kinds of bad chronic symptoms.

But the amazing thing is in complete agreement with a comment above, exactly Dr. Gundry's 'no' list that causes leaky-gut-based inflammation also causes me to have gastric reflux/heartburn symptoms. (I have hiatal hernia and was told I would be on PPI's or acid reducers for life.)

Now on Gundry diet, I have fewer instances of reflux pain than I did all those years on the acid reducers!

And I'm amazed at how closely your description matches my experience with reflux. (Where you say cooking, I generally do pressure cooking.) I remove the skins and seeds on Roma tomatoes and cucumbers and make Greek salad that doesn't bother me in moderation, only using sheep or goat ("A2" protein) Feta, for example.

All these years on the acid reducers, and now I also have numerous chronic problems (some are somewhat similar to some ME problems reported), but only if I get off of the Gundry diet methods. As long as I avoid the "no" list foods I am almost symptom free, even no arthritis or joint pain, and no prescription drugs, and definitely no reflux issues.

I do agree with you that Gundry doesn't have enough evidence that everyone should avoid all the lectins. (In fact, we don't even avoid all "lectins" in his diet, rather only lectins that we don't have coping mechanisms due to eating over long evolutionary time scales.) But he does not claim that you have to avoid all of them all the time and completely recognizes that people can tolerate many of the lectin containing foods in some quantities. The "no" list is the starting point, and not even the first phase but a second phase to heal the gut and then try to see if one tolerates some of the foods that were cut out.

Personally, I have to avoid almost all the foods on the Gundry "no" lists, because I remain what he calls a "canary" and continue to react to any of those. I have been on the Gundry diet for 7-8 years now, starting when the first book just came out, and I have improved my gut lining so bit more tolerant. Just not tolerant enough to eat any quantity of the "no" list.

Amazingly I can eat some white bread so long as it does not have dough conditioners or "enzymes" which turn out to be as bad as the lectins for causing leaky gut issues. He has supplements to counter the effects and those do work for me to reduce the intensity and length of symptoms if I eat some of the "no" list. For example, a tiny bit of white bread, preferably sourdough which has the least effect, can be tolerated better than most of the other items on the "no" list. (Two slices of white bread can give me dramatically different results, if one has dough conditioners I will have substantial symptoms.)

I have an issue with your statement "and [Gundry's] claim that he can cure almost every chronic disease with his diet is ridiculous." Gundry is very careful with his claim. His claim is that almost every chronic disease can be helped or put in remission by changing the gut or originates in the gut--not that his current specific diet methods are the way to do that. He recognizes that his own research is ever changing and that not all his patients get well on his diet methods, so he recognizes that even for the conditions he is treating it doesn't always work. I know that one can slip into thinking he is saying his specific diet does that, but he is very careful in every interview and statement, you need to read that carefully. There was an amazing interview of Gundry by some doctors who wanted to challenge him and then went on to make similar claims that he said that. But listening very carefully Dr. Gundry was very specific as I just explained. He sticks to his statement that almost every chronic problem originates in the gut and can most likely over time be resolved with changes to diet (not the same statement) -- and I am tending to agree with that.

(Just a note on zonulin and leaky gut, this is generally associated with sensitivity to gluten, which is a specific near-lectin protein. Yes, the tests would indicate or "prove" leaky gut, but leaky gut due to gluten specifically and is not a general test for leaky gut from other lectins. Gluten is one of the near-lectins that have been extensively analyzed including the genetic markers that relate to the detailed mechanisms by which the lectin pokes its way through the gut cells but differing between people with different DNA.)
 
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Oh, noticed the reference to "osteoporosis" in the opening post third paragraph.

Another result I have, with the Gundry diet, but I am sure must also include use of supplements especially large dose of D3 and the fact I am off of PPI's and stomach acid reducers.

My bone density was graphed by my PCP, and it had a very long decline way beyond a decade, perhaps two decades.

Then starting Gundry diet, along with high dose D3 (5000 IU each day), now for 7 years each time I get a bone density it is higher or at least on par with the previous. The decline is over. (And corresponds to my getting over almost all arthritis like joint pains.)

I think that reducing inflammation is part, and the supplements are part. The D3 facilitates the take up of calcium I understand. I'm still trying to figure out optimal ways to do this. (Such as what time of day to take D3 or other relevant supplements. Taking calcium in pill form is associated with heart problems, I have enough of that but do have calcium in the very occasional Tums when I get off the diet as above and have reflux. D3 has a very very long half-life in the body so if I miss a D3 I can double the next day with very little difference I understand, unlike many pills that must not be doubled or missed. Still there are effects as the supplement makes its way through the system and may interact with other nutrients, and I don't understand a lot of that.)

And I realize that the steady bone density decline almost exactly matches the long years of taking acid reducers, supporting or consistent with the opening post claims.

Another aspect of calcium uptake and bone density is what is known as blood acid level. This is a controversial topic as well. If blood and body fluids have a high acid level outside of an extremely narrow range, the body will do something about that, this character of body fluids is so critical to life. What the body does is sacrifice calcium in one's bones to get the body fluids back off from acidic. (Calcium is "base" the opposite of acid, and combining acids and base creates a "salt" but fixes the acid condition in body fluids exclusive of the stomach which is supposed to be acid.) So, this is one of the ways that bone density can be affected over the long term.

I want to caution about oversimplifying the problems. The opening post indicates the association of PPI's or acid reducers in the stomach in this problem. But be aware that the stomach is normally high acid, this is not the "body fluids" that are to be kept at neutral acid level in the rest of the body. So how reducing stomach acid might raise body fluid acid is a mystery, but the PPI's for example are all about changing acid levels in parts of the body so not that surprising.

What is known, but also controversial, is other connections of diet and acid level in blood. Eating animal protein and milk has been associated with raising acid level in blood on temporary basis, and there are long lists of foods that have been shown to associate with high or low blood acid levels. Diet changes that affect those may go far beyond the changes that I make to match Gundry's methods, for example. The controversial part is that some studies have shown no statistical significance to these claimed food effects and blood acid levels. Now the problem with those particular studies is that blood acid level fluctuates very quickly during the day, and the tests in the paper(s) were only done once a day at a random time. So, without continuous monitoring they don't get an overall picture of average blood acid levels (and average of transfers of calcium for example), thus missing the larger picture of the association of food items with this condition, leaving the topic controversial.

So, my point is that one can't simply assume that my following the Gundry diet, which should reduce inflammation, is by itself part of why my bone density is rising. Yes, reducing inflammation should be associated with other improvements like the acid issue in the body overall. Getting off of PPI's that certainly affect acid levels in different ways in different parts of the body should have an effect, even if we don't understand that as well as needed. But other choices, such as avoiding all but A2 milk proteins and then only in occasional use of cheese, and otherwise largely vegan diet choices I make for the larger fraction of my diet may also have significant effects as those choices I make more closely align with the controversial literature on blood acid. In other words, this is complicated!
 
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Just a warning regarding generalizing from my experience. I see that Dr. Gundry has new publication that relates reflux and the food items that have lectins or cause inflammation by the path of high gut permeability, but I have not read that yet.

I react to almost perfectly the "no" list that Dr. Gundry publishes and do so on a variable (that is food specific) basis regarding which mix of symptoms. (This thread discusses individual differences and I can assure this is common.) Generally, I start getting symptoms 5 hours after eating a "no" list item. I'm not quite clear on the delay before having reflux symptoms, which I expect but have not logged sufficiently to get an accurate picture. But I think it is most likely longer delay in most cases. I don't know yet if there is sufficient time delay on regular basis to connect the reflux by first having an increase in inflammation due to the leaky gut cause of that particular respective food item.

I'm still looking for a mechanistic explanation for the association of leaky gut caused inflammation and how it relates to the reflux issue -- but my personal experience is so tightly related that in my personal case it has to have a relationship IMO.

Now I personally can go without any Tums or any antacid technique if I stick strictly to the exclusions of the "no" list from Gundry. I can go for weeks. I probably won't go that long without something from the no list, so I won's typically go that long without taking at least one Tums or possibly eat another item that helps resolve the small amount of reflux I am experiencing at a moment.

So, my level of present difficulty regarding my hiatal hernia may have changed, allowing me to more easily use alternative means to avoid having reflux issues. This is part of the warning, that my experience may have a "degree" relationship that may differ with others; and that might exclude the method of avoiding "no" list items as sufficient to avoid reflux.

I have a friend with slightly different problem, gastritis, and that doesn't respond apparently to this method for acid reduction in that case, at least to the extent tried.

I still think this is very interesting that at least for some people there is sufficient relationship of leaky gut causing foods and reflux to be useful.
 
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28
For EddieB, nice to know that someone is reading... I see that you have posted in this thread as having skin in the game with this issue, and that the prior posts are some 5 years old. Any news and have you tried anything relating, or do you have any new illuminating experiences?

I'm focused very much on the methods of Dr. Gundry's diet. (And how complicated that is, and even more complicated if one has other issues that interact with diet choices, so how to make low inflammation diets for complicated individuals. I'm also a caregiver for someone with colitis, for which these methods are somewhat effective.) So, since I study this so much, I should have gotten caught up with what Gundry himself is writing on reflux. For years I have known of this connection to his "no" list because it works so exactly for me and reflux avoidance. I notice references in advertising and in blog posting, so I know Dr. Gundry is picking up on the subject. Unfortunately, I can't relate what Dr. Gundry himself has to say, yet.

I had put Gundry's yes/no list in another thread, but here it is again:

UPDATED: Dr. Gundry’s Print-Friendly “Yes” & “No” Food Lists (from the book “Gut Check”)

This is a later and probably most up-to-date list. The Gut Check book has new information that has changed from his previous books. I feel, but can't produce a lot of evidence, that a long list of new chronic symptoms I now have were made worse by my long use of PPI's/acid reducers.

Since this thread is about reflux, I am interested if anyone has lately tried Gundry's yes/no list and methods in the books, and what results, regarding reflux and heartburn. (Unfortunately, the simple list doesn't capture everything one needs to know.)


I will put an interesting observation: There is a widespread acknowledgement that strong tomato dishes cause heartburn in a lot of individuals. There are so many references on internet and in writing where people say there is "acid" in the tomatoes and that must cause the heartburn. This is absolute BS! People, even in this thread itself, have taken much stronger acids in different forms as the direct consumption and have no or opposite effect from creating heartburn. The reason tomatoes cause heartburn is that they are nightshades, and people used to think that nightshades were poisonous, and they were in essence correct -- just the degree of toxicity is very low. But high enough to cause increased acid production in the stomach at a later time period so as to increase reflux and chances of heartburn symptoms. If you watch chef/cooking programs produced in Italy, the chefs always take the skins and all the seeds out of tomatoes. I saw one video where the Italian chef noticed one seed got past him and said "well, one seed isn't going to kill anyone". Here is America we put the seeds and skins of tomatoes in everything. Pressure cooking is supposed to help with this, but for me eating very much, even pressure cooked, tomatoes give me reflux and other chronic symptoms. I can tolerate a salad with a small amount of deseeded and skin removed tomatoes without notable consequences. I put this in because it is an example from Gundry's "no" list, and the effect on reflux is so commonly known though misunderstood.
 
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This thread is mainly about PPI's (and getting off of them). My direct experience relates to reflux (due to hiatal hernia). My experience is that following Dr. Gundry's yes/no lists I got completely off of PPI's after over a decade and now have even less incidences of reflux pain than I did while taking the PPI's. However, I also notice the discussion of chronic forms of gastritis, for which I know a great deal less except that it is far more complicated since the damage is in the stomach and not just related to acid escaping the stomach.

Pepsin, which is not an acid but an enzyme, is an example of other stomach contents that can cause direct damage when there are lesions in the stomach, as well as causing reflux pain if escaping the stomach, and this is distinct from the effects of acid. There are many other complications as well.

I had theorized that the same acid that would cause reflux would also cause damage in the stomach when having gastritis. I still believe that is correct (and from that standpoint the degree to which the Gundry diet no list avoidance should avoid excessive stomach acid) should be somewhat effective. What I have learned from my friend and from further reading (which I can't test on myself) is that the situation is more complicated in gastritis because other factors enter into causing the gastritis pain and greater damage. (Pepsin enzyme being a prime example.)

I have a copy of The Gastritis Healing Book (Capellan) and have been trying to understand how to combine ideas from the Gundry diet and from that book.

An example of added complications (that would affect myself if I did have gastritis) is I have sugar issues (though very muted since the Gundry diet method). So, I can experience some psychological and other symptoms common in ME due to sugar and carbohydrate related crashing (as in hypoglycemia episodes) and would desire to combine protein with carbohydrates/sugars to slow those reactions. But The Gastritis Healing Book suggests eating carbohydrates at separate times from proteins because the mix of acid/pepsin to digest each needs to be different and eating together extends the period that both acid and pepsin (etc.) are present in strong quantities in the stomach, thus extending the damage period as well. That would for example be a huge conflict for me but may work for others.

(I will note that I can very occasionally have reflux pain even after taking antacid like Tums, and this can be explained by reflux of pepsin or other digestive enzymes that are not supposed to come in contact with skin. This would be even more critical with gastritis I would think.)

I've noticed discussion of protein and carbohydrate foods and their relation to getting off of PPI's in various posts in this thread. One discussion is about Keto diets, and I have noted elsewhere that Keto diets must inherently restrict all the grains and many carbohydrate foods that contain lectins that are implicated in leaky gut, so Keto diets are inherently much better from leaky gut standpoint since they remove so much of the lectins. Keto also lets various organs rest and heal in addition to the potential inflammation reduction from a reduction in lectins causing inflammation (looking at the issues from a Gundry diet standpoint).

Another important issue is the mucus lining in the stomach. Gundry discusses the mucus lining in the intestines at great length. The elimination diet aspects in Gundry are to reduce leaky gut directly by eliminating the lectins that do the "leaking". The enhancement aspects (my term) are to improve the gut lining and mucus lining of the intestines. I would suppose, but don't understand, how that also improves the mucus lining in the stomach itself, but I assume there is a strong connection. The enhancement methods in Gundry and other current gut research involve eating a wide variety of plants that feed a wide variety of gut (intestine) organisms, and this in turn will help with the mucus lining in the intestines.

The Gastritis Healing Book discussed pepsin at length. It is "activated" by gastric acids, so even after reflux to esophagus a bit of acid is needed to trigger the heartburn. That can also be supplied by foods. (And in this case tomatoes are on the list that do provide acid, noting my comments above that the main reasons for heartburn from tomatoes isn't the acid, but not meaning to contradict the presence of acid in tomatoes.) Likewise in the stomach itself with gastritis these are parts of the complications. So many of the techniques necessary to combat gastritis are at odds with techniques to avoid other problems like glucose spiking (which might possibly be involved in some ME symptoms, I am not sure).

That book does recognize the gut permeability issue, even noting differences from A2 vs A1 proteins in dairy products, and several issues also discussed by Dr. Gundry.

I notice that there is substantial compatibility in that book for the first phase of gastritis healing, as much of the high lectin foods are limited there as well. This suggests that the two methods can be combined in large part, certainly as the first phase is described for gastritis healing. Capellan then allows later adding some foods that Dr. Gundry would identify as having significant lectins, but that is after 90 days of gastritis healing, and I suppose more of a maintenance period. This is an area of potential conflict in the methods, but alternatives and means of testing what works for the individual can be worked out, I am sure.
 
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(Just a note, I don't want misunderstanding. I don't want to present myself as having ME, I would not match that diagnosis. And don't want to suggest that my symptoms I have experience with are equivalent to those of you who have or suspect ME. My interest is in studying Dr. Gundry's methods and if they can help and finding others who have tried methods from his books. I feel that some symptoms I have dealt with have some similarity and that is the only connection, but gives me an opportunity to learn from others' experience.)
 
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Red flags in The Gastritis Healing Book (from a standpoint of studying Dr. Gundry's):
  • Mentions eating cashews and chia seeds. These are big red flags due to the very high lectin or similar contents. Anyone who suspects they may have any significant degree of leaky gut should avoid those. Furthermore, a post above already suggested that cashews caused them reflux while other nuts did not, which is compatible with this view.
  • Sunflower and pumpkin seeds are also mentioned as ok in that book. They are on the Gundry "no" list but are not as damaging as the above items.
  • In a section recommending vegan substitutes for meat proteins for those who desire, pea protein is one of the suggestions. Since pea protein is a legume, in its direct form it will have lectins. Pea protein "isolate" or "hydrolysate" are better choices as these will have the lectins processed out. I personally get a bit of a reflux and chronic symptom reaction to the pea protein isolate that I tried. (The section also mentions hemp protein which is a definite "yes" in Gundry's books.)
  • Rice protein is suggested as mating with pea protein for a complete protein (like rice and beans). However, I don't see Gundry analyzing whether rice protein isolate solves the lectin problem from rice and having a very hard time sourcing that (isolate form).
 
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Wow, I'm halfway through the book The Gastritis Healing Book. This is really worth getting for anyone with that problem.

Several interesting things about treatment that may be relevant here, a few things that are mentioned in the first page of posts, some I haven't seen. It's not my subject, so I'm going to let you read for yourself if you care.

I think I have mentioned most of the conflicts between Dr. Gundry's diet methods. In general, my take is that the book has looked at a lot of the ground that Dr. Gundry looks at, and only a few "mistakes" in my opinion. Some other places this is a judgment call and in those cases I would defer to Capellan.

[Oh, I'm allowed to edit now--IN EDIT: I'm adding a note that the above refers to the first half of the book. See note below, I have discovered that the second half of the book, which discusses meal plans etc., seem to have a lot of items that I thought were settled as consistent with Dr. Gundry's research, but instead feature heavy use of grains that Dr. Gundry identifies causing inflammation in people who have degrees of leaky gut or high gut permiability. So overall I may be showing greater disagreement with Gundry's research than the above reflects.]

Some I have mentioned above I think are cases where Capellan isn't aware of all Gundry has dug up and that alternatives exist that will avoid lectins for those with more leaky guts. Other places like I said. Example:

Somewhere he recommends "potato juice" as a specific remedy. Not going into the details -- rather he is aware of the solanine in the potatoes and discusses how to mitigate, so there would I defer to Capellan. Other places, like where he recommends chia seeds along with a lot of other items, this seems to miss a nasty lectin and may not have had enough research behind it and just going with popular notions, so in that case there are plenty of alternatives so as to avoid the lectins. I'm trying to describe how to combine what is best from both sets of research. Gundry's work is more general, Capellan's book is very specific to gastritis. Once you have gone through the difficult work of understanding both works, one just has to make a judgment call, and more importantly they both say that experimentation in your personal case is most important.

He even mentions that the PPI's and acid reducers are only intended for short time periods, so not really disagreeing with the main thrust of this thread, either, on how to get off of them.
 
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Ok, into the second major "half" of The Gastritis Healing Book. I knew I had more problems with the book than I was seeing in the first part. The meal plans recommend high usage of the grains that I thought were in agreement should be left out in the first 90 days, reading the first half of the book. So probably a lot of work rectifying the first half with the meal plans and finding why so much more reliance on grains (which are all high lectin and can't be pressure cooked to mitigate) in consideration of Gundry's research.
 

Wayne

Senior Member
Messages
4,654
Location
Ashland, Oregon
Summary of this thread:

The Phoenix Rising forum thread titled "Getting rid of PPIs (acid blockers)" features a discussion among individuals aiming to discontinue the use of proton pump inhibitors (PPIs) due to concerns about long-term side effects and a desire to address underlying health issues.

Key Points Discussed:
  1. Concerns About Long-Term PPI Use:
    • Participants express worries about potential long-term effects of PPIs, such as nutrient deficiencies (e.g., vitamin B12 and iron), increased risks of dementia, cardiovascular diseases, and osteoporosis.
    • There's mention of PPIs possibly affecting mitochondrial function, leading to fatigue and other issues.Phoenix Rising ME/CFS Forums
  2. Challenges in Discontinuing PPIs:
    • Users report experiencing rebound acid reflux when attempting to stop PPIs, making the process difficult.
    • Some have tried gradual tapering or alternative remedies to mitigate withdrawal symptoms.Phoenix Rising ME/CFS Forums
  3. Alternative Approaches and Remedies:
    • Dietary changes, such as adopting a low-fat or lectin-free diet (e.g., Dr. Gundry's diet), have been beneficial for some in reducing reflux symptoms.
    • Elevating the head of the bed, using digestive enzymes, and incorporating probiotics are among the strategies discussed to manage symptoms without PPIs.Phoenix Rising ME/CFS Forums
  4. Testing and Diagnosis:
    • Members emphasize the importance of testing for conditions like small intestinal bacterial overgrowth (SIBO), Candida overgrowth, and leaky gut to identify underlying causes of reflux.
    • Tests such as the Genova Diagnostics FMV, Great Plains Lab Organic Acid Test (OAT), and Cyrex Laboratories' Intestinal Antigenic Permeability Screen are mentioned.Phoenix Rising ME/CFS Forums+1Phoenix Rising ME/CFS Forums+1
  5. Individual Experiences:
    • Some users share personal success stories of reducing or eliminating PPIs through lifestyle changes and alternative treatments.
    • Others highlight the difficulties faced, including persistent symptoms and challenges in finding effective non-PPI treatments.
Overall, the thread serves as a platform for individuals to share experiences, challenges, and strategies related to discontinuing PPIs and managing acid reflux through alternative means.
 

EddieB

Senior Member
Messages
638
Location
Northern southern California
For EddieB, nice to know that someone is reading... I see that you have posted in this thread as having skin in the game with this issue, and that the prior posts are some 5 years old. Any news and have you tried anything relating, or do you have any new illuminating experiences?
Hello. Unfortunately not much in the way of progress for me, but continuing to look for answers.

Of note, are probably these two therapeutic treatments that I’m chasing after….
1. Fosamprenavir for pepsin.
There’s considerable research that suggests that refluxed pepsin can attach to the esophogial tissues and become activated whenever food is present. Fosamprenavir is an HIV medication that was found to deactivate pepsin as a side effect.
Long story short, my gastrologist prescribed me some to trial. I’ve also been in contact with Dr Nikki Johnston, one of the primary researchers. So far, due to my severe inability to tolerate medications (gastritis) I haven’t been able to use it in an ongoing basis. More later.
2. Weak esophageal function.
I did a manometry test last year. The results showed very weak esophageal muscle strength. So in my thoughts, it makes complete sense why my throat is in so much disarray. The sphincters are weak, allowing the stomach contents to escape. Reflux.
Surgery remains questionable for this, as it does not increase muscle strength. And I’ve had two doctors that outright said don’t do it, it would not work.
Discussion with my gastrologist, there are a few possible medications that could increase esophageal function,
Pyridostigmine/ Mestinon - works on acetylcholine
Prucalopride/ Motegrity - works on serotonin
Busiperon/ Buspar - works on dopamine and serotonin

Another possibility, a supplement with similar effects as Pyridostigmine, huperzine A, available over the counter.
Since I struggle with muscle weakness in general, Pyridostigmine or huperzine A seems like a good place to start. Still considering what to do, but I’m leaning toward giving the huperzine A a try first.

Also recently did a gastrin and ghrelin blood test. Gastrin was in the normal range, but ghrelin was high.
I have a zoom appointment later this week with a doctor to discuss the results.

Still suffering with daily unexplained weakness, fatigue, varying degrees of severity. Uncertain about whether EV diagnosis is directly/ indirectly related.
All for now.
 
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You need acid to break down protein, therefore you will produce more acid when eating protein. But if you cut protein, you'll run into deficiencies. But "cutting carbs" does by no means include "up protein". You need to get your calories from fat and not from protein if you cut carbs. Some people do well on high protein, but many don't, for different reasons. I try to stick to about 70% of calories from fat, 25% from protein, 5% carbs (without counting macros though).
(More for EddieB)

This was part of a response to EddieB from 2020, about eating proteins causing reflux. And EddieB, I see a response saying you can't do the calories from fat, at the time. There are relevant points in both The Gastritis Healing Book, and from Dr. Gundry's books. I'm just posting some notes now having time problems so will take a bit for more responses.


So first a question, which I will partly answer on my own: EddieB do you also have gastritis, not just reflux? [Oh, I see answer already above message, can't tolerate meds due gastritis. -- in EDIT] The people on this thread working with the PPI's can be in either category. (I guess gastritis, reflux, or both. Or ulcers including duodenal, which is down rather than up, but those are usually repairable and thus short-term PPI usage.) But I can see that one can have a more confounding problem than I had with reflux, I was always able to control the reflux pain just wrecking my system with long-term use of the PPI's. If acid reduction doesn't mostly resolve the reflux, then I can see the esophageal issues and the gastritis issues as closely connected, because any acid, pepsin, etc. that potentially erodes the stomach in gastritis is also highly likely escaping into the esophagus; and the treatments may need to be similar.

With that in mind, Healing Book suggests that eating fats slows the digestion and thus prolongs the period in which both acids or pepsin and similar enzymes are concentrated in the stomach, and for gastritis patients Capellan recommends low fat diet. This is in conflict with some of Dr. Gundry's methods or keto diets that use a higher fat diet to allow reduction of either protein or carbohydrate foods. Keto (generic) diets are often high fat.

But then there is a discussion of eating protein and that causing reflux. The opening post talks about how Frunobulax had reflux after eating items from Gundry's "no" list but not from the "yes" list. I point out that the component in foods that cause leaky gut, lectins, are themselves proteins. So, the point is that one mechanism by which the "evidence" showing low carb reduces heartburn is that "low carb" inherently restricts the grains and many of the lectin bearing foods -- working from a concept that part of the cause of the reflux problems is from the inflammation after leaky gut occurs in the intestines. (Just remember that my experience almost exactly mirrors Frunobulax in regard to Gundry's yes/no lists.) You can't ignore the basic mechanical issues regarding reflux like weak sphincters and hiatal hernia; these are about foods affecting the stomach contents in a way to exacerbate these problems. So, the question I get from this is "what proteins?" (Not just accepting that low protein per se is an answer.)

So, I'll have to get back, I see a lot of value in The Gastritis Healing Book, even for cases of extreme reflux issues. If one has been on PPI's for extended periods (I was something like 12-15 years), the likelihood of significant leaky gut is high, and considerations from Gundry's research should be considered. I figured out that Capellan was saying that some people have the leaky gut issue and should reduce grains etc. but was not considering these people when they wrote the meal planning section of the book.

Part of my research idea is to work through replacements for these that target specific issues (like reflux) and avoid leaky gut. For example, the Healing Book meal plan for Tuesday breakfast shows "Classic Oatmeal". I think this is *(&(&)*)%!! crazy. I used to do this every day (dry or cooked oats), then wonder why I was crashing at 11 AM. This is so bad from a standpoint of lectins causing leaky gut, and also from issues of glucose spiking, I wouldn't recommend that for anyone. If combined with enough protein to avoid glucose spike, but want some soothing porridge at breakfast, one can make millet porridge which is tasty (have to get used to it) and has absolutely no lectins to cause leaky gut.

On the fats issue, could look into "MCT" oil, as that is not actually digested. A high quality MCT with almost exclusively C8 and C10 (carbon chains) will actually pas through the intestine directly into the blood stream to be used as food, without any digestion process, I understand. But I have no idea at present how that affects the stomach phase of digestion. Oh, I know some (normal) people have stomach problems withs MCT oil, so, maybe not. So, another research project.


One thing Dr. Gundry suggests is keeping a "food diary" in which absolutely everything one eats is written down, and also list symptoms when they occur, so one can do a forensic audit to look for correlations with known foods that cause issues.
 
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Just a crazy note, all these decades of having reflux problems, I didn't know about laying on my left side.

On back body raised and also turning on left, raised, recommended because that is "up" for the reflux and gravity helps. Laying on right side aims down from stomach. I didn't know that and usually on my back with an adjustable bed raised but sometimes would roll over on one side or other. Now I realize the number of times I woke up on right side with pain--hadn't connected the dots but just remembering pain was common on right.

Just learned that from The Gastritis Healing Book, and gastritis isn't even my problem.
 

EddieB

Senior Member
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Northern southern California
Just a crazy note, all these decades of having reflux problems, I didn't know about laying on my left side.

On back body raised and also turning on left, raised, recommended because that is "up" for the reflux and gravity helps. Laying on right side aims down from stomach. I didn't know that and usually on my back with an adjustable bed raised but sometimes would roll over on one side or other. Now I realize the number of times I woke up on right side with pain--hadn't connected the dots but just remembering pain was common on right.

Just learned that from The Gastritis Healing Book, and gastritis isn't even my problem.
My experience has been, yes, sleeping on your left side is best. To take it steps further, lift/ tilt/ prop up the head of the bed, 6-8 inches. The whole bed tilted, not bent in the middle. Use bricks, wood blocks, or they sell premade spacers.
Bed wedges, pillows, or anything that causes you to “bend” is a problem. As this can cause pressure on the diaphragm and worsen reflux.
I know some people swear by their bed wedges, but I think anyone with severe reflux should try this for at least a few days and see the results.
Some bed frames aren’t capable of being tilted.
An easier option to test this out, if you have a couch you can sleep on, a few blocks of wood placed under one end will get it done. Fairly simple yet effective. I did this for a year until I could get a compatible bed frame.
 

EddieB

Senior Member
Messages
638
Location
Northern southern California
I have a lot of different thoughts on this illness and it’s many mysterious ways of ruining people’s lives.
For some, PPI seems to work great, others no so much. I know many people who had severe reflux, HH, that are living mostly normal lives being totally dependent on PPI. Not ideal, but better than the daily hell some of us live with.
Some of the more puzzling aspects, how people who never had reflux are suddenly coming up with it. If you read forums, there’s dozens of people complaining of suddenly having reflux after covid. Which suggests a viral component. I myself am entero virus positive, which has my suspicion.
Another one very common, after starting antidepressants. It’s almost standard practice now, doctors handing out PPI along with the psych meds.
This definitely makes sense from a gut microbial perspective. It might also go as far as the neuro chemistry changes, acetylcholine, serotonin.
On the flip side, a few reports of antidepressant/ anti anxiety meds reducing reflux symptoms or stopping them altogether. I’ve had a couple people tell me they want to stop their meds but get horrible reflux if they do. Quite the paradox.
I truly believe there’s much more to be learned about how to treat this.
More later.
 
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@gelliott
Have you looked at larazatide acetate for leaky gut?
I have some but haven’t gotten into it yet.
@EddieB, I just looked it up and it seems to be specific to Celiac Disease, which is specific to the near-lectin gluten. (At least that's what I read. Also reading trials not going so well, and trials stopped.)

Oddly for a lot of us who don't have Celiac but know that we have leaky gut, the gluten (itself) is almost the least offensive. I know the Celiac mechanism has been studied in great detail, and they know much about the specific genes that allow it, and specific details of how the gluten penetrates the gut when have that specific set of genes and the other enabling conditions. In any case that means that a lot of "gluten free" products out there have the other non-gluten grains used which are even worse for the leaky gut and for reflux that seems to track leaky gut causing lectins.

I ate a slice of white sourdough bread today. (I shouldn't have, but....) And very little symptoms. Been getting over having eaten some much worse things so some joint pain in last few days but that is receding. Somewhere I put the story about how I can eat one or two slices of bread from a source with no dough conditioners or enzymes--very simple recipe with either sourdough or real yeast--and have no symptoms. However, eat a more commercial white bread with a dough conditioners and have a lot of joint pain, nasal drip, and especially annoying skin problems especially in my scalp. Oh, and reflux as well, but none with the limited slice of bread earlier. If I do get a symptom eating a small amount of bread, the reflux may be the single symptom I get (I would say "before" other symptoms but trying to distinguish the time sequence from the intensity relationship, that reflux might be many hours later and possibly longer than it takes for other symptoms which will start in 5 hours now). (Oops, had to take a Tums for what I ate today, at midnight.)

I've really gotten off of all prescription medication (or over counter PPI's or antacids) with no pain or reflux or any symptoms by following Dr. Gundry's diet methods; well, when actually follow. (Like @Frunobulax listed as working for reflux.) Now haven't solved all my problems, some heart issues etc., which is odd because Dr. Gundry's first target was heart issues since that is his original field. One thing is high levels of vitamin D3, I had been ignoring that for a while (concentrating on being a caregiver and not paying attention to myself for a bit). That has allowed some symptoms to come back, but reflux is not one of those. If I am careful enough but not perfect, I might take a Tums. (This is now, not what was happening a few years ago.)

Also @Frunobulax had listed a blood test relating zonulin for leaky gut in the opening post, and I pointed out that is also specific to the leaky gut from gluten and not from other lectins. The confusion seems to be that one having gluten sensitivity or Celiac disease, that definitely is a leaky gut condition, but it is just one of a large number of ways to get leaky gut.
 
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