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cristiana

Pain - referred gastric or something else?

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2 hours ago, knitty kitty said:

Cristiana, 

Have you considered the Autoimmune Paleo Protocol diet?  It's basically meat and veg, some fruit, no dairy, no nightshades (potatoes, tomatoes, eggplant and peppers), no grains, no legumes (beans).  It's helpful in reducing inflammation.  

The book "The Paleo Approach" by Sarah Ballentyne covers this diet for autoimmune diseases.  I found it very helpful...

No, I haven't tried it but I know someone who has given it a go although it's been a while since I met up with her to find out how it is going.  Funnily enough I was only thinking that I need to look at my diet again and try to eat more fruit and veg.  Have you completely given up potatoes, tomatoes and peppers?  I think I'd find that quite tough, although if it made a difference to the pain it would be worth it.  

I certainly have real problems with dairy when I've been CC'd and I generally try to stay off it for a while when that happens.

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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14 hours ago, cristiana said:

No, I haven't tried it but I know someone who has given it a go although it's been a while since I met up with her to find out how it is going.  Funnily enough I was only thinking that I need to look at my diet again and try to eat more fruit and veg.  Have you completely given up potatoes, tomatoes and peppers?  I think I'd find that quite tough, although if it made a difference to the pain it would be worth it.  

I certainly have real problems with dairy when I've been CC'd and I generally try to stay off it for a while when that happens.

 

I began keeping a food/mood/poo'd journal to keep track of what might be causing unpleasant symptoms.  And I did a lot of research.  And I did a lot of trial and error.  Felt like a guinea pig.  So what I learned, I share, because being a guinea pig isn't fun.  

The tips of the villi in your small intestine produce lactase, an enzyme that digests lactose (milk sugar) in dairy.  Celiac Disease damages the villi and they can't produce the lactase to digest the dairy.  By avoiding gluten, the villi will regrow and can begin producing lactase again.  Some people can consume dairy again after they are healed.  I still have a problem with dairy (a hypersensitivity reaction not an anaphylactic reaction), so I avoid it still. 

Yes, I avoid potatoes and the other nightshades.  In researching, I found that nightshades, potatoes especially, contain alkaloids, chemicals that cause leaky gut syndrome.  In leaky gut syndrome, big molecules of gluten and other things can slip through the intestines and get right into the blood stream and cause problems throughout the body.  Dr. Fasano has done a lot of research on this. 

Back to dairy... the undigested lactose (milk sugar) passes through the small intestine into the large intestine where bacteria digest it.  Normally, everyone has bacteria in their intestines which help digest food further so we can get more nutrients.  Unfortunately, the lactose loving bacteria produce lots of gas as a byproduct.  I feel I develop squeaky balloon animals in my intestines when this happens.  

Sometimes, with an abundance of undigested lactose or gluten (carbohydrates), certain bacteria proliferate and move into the small intestine where they aren't meant to be.  This is small intestinal bacterial overgrowth, SIBO.  This is a problem for a lot of people with Celiac Disease.  

Some bacteria and intestinal yeasts that feed off undigested carbohydrates produce alcohol as a byproduct.  The amount of alcohol produced can actually make a person drunk.  This is called brewer's syndrome.  It's not fun either.  

The AutoImmune Paleo Protocol starves out these "bad" bacteria.  The AIP diet eliminates carbohydrates and sugars.  Without anything to eat, these "bad" bacteria starve and die off.  Other beneficial bacteria are allowed to proliferate.  

On the AIP diet, your body switches from using carbohydrates as an energy source to using fats and proteins as an energy source.  It's like going from a regular gas guzzling car to a powerful diesel engine.  It's a big difference.  My body likes it.  

I hope this helps.  

Knitty Kitty

 

 

 

 

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On 6/26/2020 at 4:13 AM, knitty kitty said:

Christiana, 

Proton pump inhibitors like Nexium deplete your magnesium level...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782221/

Gaviscon contains magnesium.  Perhaps it works better for you because it contains magnesium.

Have you discussed with your doctor you may be deficient in magnesium?  

Here's an article that describes magnesium deficiency symptoms....see if your symptoms (muscle cramps) match these.

https://wellnessmama.com/54128/magnesium-deficiency/

 

Many Celiacs are deficient in Vitamin D.  Vitamin D deficiency is being connected to costochondritis.

https://pubmed.ncbi.nlm.nih.gov/22761623/

 

Vitamin D and magnesium work together.  Magnesium also works with thiamine.  

 

[PDF] Thoracic Rib Cage Lesions Caused by Thiamin Deficiency - Etiology and Physiologic Therapy of Tietze's Syndrome - Austin Publishing Group
https://austinpublishinggroup.com › ...

 

Thiamine deficiency can manifest as Gastrointestinal upsets like gerd....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175961/

Thiamine deficiency can also cause a cough.

[PDF] Thiamine and magnesium deficiencies: Keys to disease - Peirson Center
"that chronic cough may be part of the autonomic dysfunction" caused by thiamine deficiency.

Here's another article about thiamine deficiency symptoms.  Do any of these match your symptoms?

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#section9

Thiamine deficiency can effect your digestion of fats and carbohydrates.  Thiamine is needed to make those digestive secretions.  

Celiacs sometimes suffer from gallbladder problems.  Here's an article that describes gallbladder problem symptoms...

https://www.medicalnewstoday.com/articles/311357

While this article says upper right quadrant pain may indicate gallbladder problems, my pain was square in the middle of my back.  I did have to ring my mum in the middle of the night to take me to hospital for emergency surgery.  

And some Celiacs have problems with their pancreas.....

https://www.nhs.uk/conditions/chronic-pancreatitis/

 

Celiac Disease causes malabsorption which results in malnutrition.  Part of proper follow up care for Celiacs is correcting vitamin and mineral deficiencies.  

Please discuss these with your doctor.  I'm not a doctor.  I'm a microbiologist.  

Hope this helps.

Knitty Kitty 

P.S. Edit is for this article connecting rheumatoid arthritis and thiamine deficiency....

https://www.hormonesmatter.com/juvenile-rheumatoid-arthritis-an-unusual-treatment/

This is excellent - thank you Knitty Kitty.


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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I

17 hours ago, knitty kitty said:

  

The AutoImmune Paleo Protocol starves out these "bad" bacteria.  The AIP diet eliminates carbohydrates and sugars.  Without anything to eat, these "bad" bacteria starve and die off.  Other beneficial bacteria are allowed to proliferate.  

On the AIP diet, your body switches from using carbohydrates as an energy source to using fats and proteins as an energy source.  It's like going from a regular gas guzzling car to a powerful diesel engine.  It's a big difference.  My body likes it.  

I hope this helps.  

Knitty Kitty

 

 

 

 

I've read about leaky gut but have never really understood it.  Thank you - that's very interesting.

I find I only have significant problems with pain and bloating with dairy after CC, or if I have taken antibiotics that disagree with  me or NSAIDs.   Oh - and gluten-free pure oats - disaster for me, and I really miss them...

I stay off it for a while and then reintroduce so I think I do have some tolerance of dairy once I've recovered.

However, with the Paleo, is that something you follow permanently or only if you have been glutened?  Sorry if I have missed something.


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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1 hour ago, cristiana said:

I

I've read about leaky gut but have never really understood it.  Thank you - that's very interesting.

I find I only have significant problems with pain and bloating with dairy after CC, or if I have taken antibiotics that disagree with  me or NSAIDs.   Oh - and gluten-free pure oats - disaster for me, and I really miss them...

I stay off it for a while and then reintroduce so I think I do have some tolerance of dairy once I've recovered.

However, with the Paleo, is that something you follow permanently or only if you have been glutened?  Sorry if I have missed something.

The AIP diet, the Paleo diet, is good for healing.  It can take eighteen months to two years to heal.  Some people stay on it long term.  Some go back on the AIP diet after gluten exposure for weeks or months until they can tolerate a more expanded diet.  It's really up to you and what best works for you.

Here's some articles you may find helpful...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313618/

 

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Hi Christiana...I hope you feel better soon...Interesting thread...

2 thoughts: 

1.  Have you considered that your muscle "pains" might possibly be the result primarily of intense or chronic stress/worries? Certainly understandable in this current pandemic. Mind you, I am not implying that you are a hypochondriac.   But, based on MY OWN experience as a proud, lifelong, card-carrying member of the Hypochondriac Club on practically a first name basis with my docs......I always notice that my body functions, esp.  musculo-skeletal pain, fatigue, dizziness, indigestion, GERD, etc...seem so much worse and can last longer whenever I am stressed out or have a "really a bad day" (or week/month/even year) for ANY reason.  I think this is a function of both my HSP nature, anxiety issues, insomnia, well as simple body chemistry:  long-term elevations of cortisol, adrenaline, inflammation effects our ENTIRE bodies and minds.

I'm glad you went to the ER to have docs check out your cardiovascular system.  That should ALWAYS be a first priority with any sudden/unusual pain or other severe symptoms, just to be on the safe-side.  That done and ruled out by tests, perhaps now is a good time to think about your life/routines/relationships in general.  Consider asking, "Is there something stressful in my life now or that occurred at the same time I first noticed these aches/pains starting that could have triggered these symptoms?"  If the answer is "yes" (or "HELL YES!!"), then you have a path to explore making some needed changes in your life that could perhaps also reduce your chronic physical issues.

There are really some great YouTube videos and a ton of articles/books on stress and physical health/symptoms and how to find relief.  My favorite is any meditation video by Michael Sealy.  All his videos are free, are found by doing a Google search "Michael Sealy videos".  He has recorded many different videos on every topic including: relaxing sleep, anxiety, reducing negative thoughts, anxiety and chronic pain, even IBS.  Best of all...he has a very calm, soothing Australian accent...Love to listen to him every night before drifting off to sleep...😉.

2.  I strongly urge anyone to think twice about taking Nexium, Pepcid, esomeprazole, or any PPI/acid-suppressing drugs, esp. long term, based on personal exp. and increasing research study safety red flags.  Here is one: 

See:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2949084/#:~:text=It is notable that the,use and SIBO in IBS.

IMO, PPIs are extremely toxic, dangerous stuff that can lull one into a false sense of security (by concealing GERD due to acid reduction when the body actually NEEDS that acid to maintain healthy gut bacteria balance) but, in fact, seriously, permanently damage the intestines and digestion functions.  In my case, I believe long-term PPI use is a HUGE cause of my continued daily indigestion/low weight issues, despite strict gluten-free diet compliance and other IBS/SIBO recommended therapies.   IMO, prescribing PPIs to Celiac/G. Intolerant people is like trying to put out a gut fire with gasoline.  

I was first prescribed PPI 15 years ago in 2005, after an upper EGD showed "esophagitis".  Doc prescribed it...and I dutifully complied without Q...took it for a few weeks.  My repeat scope a month later showed my gut had healed and I didn't think I needed it anymore.  But the doc responded that I should remain on it "every day indefinitely to prevent recurrence". ?? No discussion of safety concerns or any alternatives to treat/reduce/eliminate heartburn. For some reason, I ignored his advice and just stopped taking it back in 2005.  In fact, almost EVERY GI or PCP doc I have ever met since that time seem so eager to hand it out like PEZ whenever they hear the complaint "heartburn".  But I also didn't change anything about my lifestyle (big meals right before bed, spicy food diet, high stress job, being overweight) which, back then, had CAUSED my heartburn back then because no one discussed the REAL causes or safer remedies. 

Fast forward to 2014, when, sadly, I ignored my first good instinct to stay off PPIs and resumed daily doses after a later GI doc, unbeknownst to me at the time, scared the hell out of me after misdiagnosing me with Barretts Esophagus (BE), based on only a rushed, first-impression glance during a brief, un-sedated EGD inspection not actual post EGD biopsy results.  In 2019, thankfully, I had a different GI doc and another EGD (this time sedated, thorough).  Fortunately, this competent doc reviewed my past EGD videos/biopsy reports and "clarified" that I never actually had BE at all because my esoph. looked normal and all of my past biopsies were essentially normal except for "mild" esophagitis.  The very day he said that, I immediately tossed every PPI I had into the med recycling trash bin and have relied on SAFE measures (losing weight/cutting spicy and other food triggers/stress reduction/smaller meals) to prevent GERD ever since.  But, unfortunately, the damage to my poor small intestine has been done.  

 

 

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15 hours ago, Kate333 said:

Hi Christiana...I hope you feel better soon...Interesting thread...

2 thoughts: 

1.  Have you considered that your muscle "pains" might possibly be the result primarily of intense or chronic stress/worries? Certainly understandable in this current pandemic. Mind you, I am not implying that you are a hypochondriac.   But, based on MY OWN experience as a proud, lifelong, card-carrying member of the Hypochondriac Club on practically a first name basis with my docs......I always notice that my body functions, esp.  musculo-skeletal pain, fatigue, dizziness, indigestion, GERD, etc...seem so much worse and can last longer whenever I am stressed out or have a "really a bad day" (or week/month/even year) for ANY reason.  I think this is a function of both my HSP nature, anxiety issues, insomnia, well as simple body chemistry:  long-term elevations of cortisol, adrenaline, inflammation effects our ENTIRE bodies and minds.

I'm glad you went to the ER to have docs check out your cardiovascular system.  That should ALWAYS be a first priority with any sudden/unusual pain or other severe symptoms, just to be on the safe-side.  That done and ruled out by tests, perhaps now is a good time to think about your life/routines/relationships in general.  Consider asking, "Is there something stressful in my life now or that occurred at the same time I first noticed these aches/pains starting that could have triggered these symptoms?"  If the answer is "yes" (or "HELL YES!!"), then you have a path to explore making some needed changes in your life that could perhaps also reduce your chronic physical issues.

There are really some great YouTube videos and a ton of articles/books on stress and physical health/symptoms and how to find relief.  My favorite is any meditation video by Michael Sealy.  All his videos are free, are found by doing a Google search "Michael Sealy videos".  He has recorded many different videos on every topic including: relaxing sleep, anxiety, reducing negative thoughts, anxiety and chronic pain, even IBS.  Best of all...he has a very calm, soothing Australian accent...Love to listen to him every night before drifting off to sleep...😉.

2.  I strongly urge anyone to think twice about taking Nexium, Pepcid, esomeprazole, or any PPI/acid-suppressing drugs, esp. long term, based on personal exp. and increasing research study safety red flags.  Here is one: 

See:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2949084/#:~:text=It is notable that the,use and SIBO in IBS.

IMO, PPIs are extremely toxic, dangerous stuff that can lull one into a false sense of security (by concealing GERD due to acid reduction when the body actually NEEDS that acid to maintain healthy gut bacteria balance) but, in fact, seriously, permanently damage the intestines and digestion functions.  In my case, I believe long-term PPI use is a HUGE cause of my continued daily indigestion/low weight issues, despite strict gluten-free diet compliance and other IBS/SIBO recommended therapies.   IMO, prescribing PPIs to Celiac/G. Intolerant people is like trying to put out a gut fire with gasoline.  

I was first prescribed PPI 15 years ago in 2005, after an upper EGD showed "esophagitis".  Doc prescribed it...and I dutifully complied without Q...took it for a few weeks.  My repeat scope a month later showed my gut had healed and I didn't think I needed it anymore.  But the doc responded that I should remain on it "every day indefinitely to prevent recurrence". ?? No discussion of safety concerns or any alternatives to treat/reduce/eliminate heartburn. For some reason, I ignored his advice and just stopped taking it back in 2005.  In fact, almost EVERY GI or PCP doc I have ever met since that time seem so eager to hand it out like PEZ whenever they hear the complaint "heartburn".  But I also didn't change anything about my lifestyle (big meals right before bed, spicy food diet, high stress job, being overweight) which, back then, had CAUSED my heartburn back then because no one discussed the REAL causes or safer remedies. 

Fast forward to 2014, when, sadly, I ignored my first good instinct to stay off PPIs and resumed daily doses after a later GI doc, unbeknownst to me at the time, scared the hell out of me after misdiagnosing me with Barretts Esophagus (BE), based on only a rushed, first-impression glance during a brief, un-sedated EGD inspection not actual post EGD biopsy results.  In 2019, thankfully, I had a different GI doc and another EGD (this time sedated, thorough).  Fortunately, this competent doc reviewed my past EGD videos/biopsy reports and "clarified" that I never actually had BE at all because my esoph. looked normal and all of my past biopsies were essentially normal except for "mild" esophagitis.  The very day he said that, I immediately tossed every PPI I had into the med recycling trash bin and have relied on SAFE measures (losing weight/cutting spicy and other food triggers/stress reduction/smaller meals) to prevent GERD ever since.  But, unfortunately, the damage to my poor small intestine has been done.  

 

Hi Kate

Thanks so much for your very helpful reply, containing lots of useful advice.

No need to worry - I am a hypochondriac!  😄

I suspect stress is part of the mix - since lockdown I've had to visit the BC clinic for a rash, and have an MRI lined up for tomorrow to investigate a lump in my mouth. That test has been put on hold since lockdown.  All this and other concerns has put Covid19 in the shade somewhat but yes - Covid19 has certainly been another contributing factor.

The website has been an absolute blessing as I have had so many issues since my coeliac diagnosis that others on this forum can relate to.   Two local friends, coincidentally diagnosed at the same time, have gone on with their lives and hardly ever give coeliac disease a passing thought apart from adhering to the diet.   But I suspect because they were diagnosed in their 30s rather than me (mid-40s) that has helped them heal better and faster.  I have not been able to chat through things with them and I can only see my gastroenterologist about once a year, so it has been great to be able to visit this website.  However, some of my symptoms have been so bizarre that I have googled too much elsewhere and have diagnosed myself with some pretty grim diseases in the last few years.  A little knowledge is indeed a dangerous thing.

Over the past few days I have come off Nexium cold turkey.  I do share your concerns about taking PPI.   I'm especially concerned as one day the doctor has said because of a blood condition I may have to take aspirin every day - which will probably mean I'll need to take a protective PPI as I can't tolerate it.  But I mustn't think too far ahead - "sufficient to the day are the worries thereof" etc.   

In the more recent past I have tried to use PPIs for short bursts of time only - maximum probably only a fortnight, but usually rather less time than that.   Nexium has always suited me better than omeprazole, but this time maybe not so much. It has been uncharacteristically hot in England and perhaps when one is dehydrated side effects (dizziness, nausea, bloating) are more noticeable?  Also, I didn't introduce the recommended dietary changes immediately and had quite a few fatty meals (even the Nexium medication advice recommends one avoids fatty foods). Since coming off the drug I still have a bit of abdominal burning but it is an old familiar pain that I get with gastritis/glutening so I am quite relaxed about it.   I am still getting upper back and shoulder pain but it seems to tie up with that burning pain, so I feel it must be referred pain which the doctor I saw at A&E last week says can happen with acid in the oesophagus??

Early days yet but I think the bloating may have made all this pain much more severe. It scared me because I thought it was my heart - esp. associated with the dizzy spells and nausea. It was terrible, indescribable pain - but being a hypochondriac I imagined the worst and probably made it worse.  My old granny, not a hypochondriac, would probably have thought it was age related and would have put it down to "arthritis and rheumatism"!

Thank you again for taking the time to write.   And I will do as you say, i.e. "cutting spicy and other food triggers/stress reduction/smaller meals) to prevent GERD".

 

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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I caution you against going off a PPI "cold turkey". I you have been on a PPI for any length of time you are likely to get a gastrin rebound, a well-documented effect. I have tried going off my PPI cold turkey twice but with painful results that took a week or more to get back under control. Getting off a long term administration of a PPI can be very difficult and should be done very gradually. 

Currently, I am trying to wean myself off omeprazole or at least down to a lower dose. I seem to have succeed in reducing the dosage from 20mg daily to 10mg at this point. I asked my doctor to prescribe 10mg caps to allow me to begin substituting 10mg dosages every fourth day, then every third day, then every second day, etc. over several weeks time. I am down to 10mg daily and it seems to cover me. I have also been taking extra Niacin, Riboflavin and Magnesium. Soon I will try to intersperse some days with no PPI and supplement with an over the counter antacid as necessary.

Take it slow.

https://www.webmd.com/heartburn-gerd/news/20090702/stopping-ppis-causes-acid-reflux-symptoms#1

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1 hour ago, trents said:

I caution you against going off a PPI "cold turkey". I you have been on a PPI for any length of time you are likely to get a gastrin rebound, a well-documented effect. I have tried going off my PPI cold turkey twice but with painful results that took a week or more to get back under control. Getting off a long term administration of a PPI can be very difficult and should be done very gradually. 

Currently, I am trying to wean myself off omeprazole or at least down to a lower dose. I seem to have succeed in reducing the dosage from 20mg daily to 10mg at this point. I asked my doctor to prescribe 10mg caps to allow me to begin substituting 10mg dosages every fourth day, then every third day, then every second day, etc. over several weeks time. I am down to 10mg daily and it seems to cover me. I have also been taking extra Niacin, Riboflavin and Magnesium. Soon I will try to intersperse some days with no PPI and supplement with an over the counter antacid as necessary.

Take it slow.

https://www.webmd.com/heartburn-gerd/news/20090702/stopping-ppis-causes-acid-reflux-symptoms#1

Agreed.I think this is why I'm now getting the burning and the back pain again.    I have taken the Nexium this time round for under two weeks so I thought I might get away with coming off it quickly.   Thank you for this post as it reminds me why the burning and back pain have come back.

I used to come off PPIs gradually using Ranitidine but it isn't available.  Annoyingly I cannot find a lower dose Nexium OTC and I'm loathe to use it again because of the dizziness and nausea.  I'll pop into town tomorrow and see if they have another OTC at a lower dose.  Bizarrely last time I asked about this the pharmacist said 10mg Omeprazole was the same as taking 20mg Nexium.  Do you think she was right about this?

 

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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4 minutes ago, cristiana said:

Bizarrely last time I asked about this the pharmacist said 10mg Omeprazole was the same as taking 20mg Nexium.  Do you think she was right about this?

 

 

I wouldn't know about that. But I think 20mg of Omeprazole is the most commonly prescribed dosage for that med. I believe it would be considered the "standard" dosage. But traditional antacids such as Tums and Gaviscon can be helpful in bridging when you are trying to get off a PPI and they should be well-tolerated. Ultimately, the way any of those things work is just to raise the PH of the stomach's contents, whether by reducing the amount of acid produced or by neutralizing it. But if you find that you are having to take antacids more than a couple of times per week after trying to eliminate the PPI you might as well go back on the PPI and live with as low a dose as will give you good coverage.

We sometimes lose track of the fact that people with GERD often have neurological or physical impairment of the esophagial sphincter mechanism. This means that the one-way valve closing off the stomach from the esophagus is not closing as tightly or completely as it should. Often, this is caused by a hiatal hernia that creates a distortion of the sphincter. So, in those cases the problem is not with he stomach acid itself but with where it winds up - in the esophagus and even into the throat/larynx/sinuses. Unfortunately, the only way to combat that is to reduce the amount of or neutralize the stomach acid. They used to do these surgeries where they lapped a chest muscle around the esophagus to simulate the sphincter (called a "lap nissen fundoplication") but that often gave undesirable results so when PPI's came along it was considered to be a non-invasive, more reliable and less expensive way of accomplishing the same outcome.

My GI doc contends that a lot of the negativity surrounding the use of PPI's is scientifically unfounded and has not been empirically demonstrated to be true. The bulletin board in his treatment room is covered with articles from medical journals that substantiate his claims. And this guy is a Seventh Day Adventist and if you know anything about that faith group they are very health conscious.

And it needs to be said that whatever remedies prove successful are vastly preferable to Barrett's disease and esophagial cancer. 

When there is impairment of the esophagus' closing mechanism such as can occur with a hiatal hernia, no amount of vitamin supplementation will correct that. Changing eating habits, supplements and elevating the head of the bed and other lifestyle changes can help but the underlying physical problem is still present.

So for me, who does have a hiatal hernia, where I'm at is making a patient effort to reduce the dosage of or possible get entirely off of PPI therapy but not at the expense of generating worse health issues down the line.

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Hi Cristiana,

Have you tried DGL?  I had gastritis a couple of years ago and found it to be very soothing.  When I was in the worst of it I took it a few times a day.  Now when I get a little heartburn or anything like that I take one too.  Might be worth a try if you haven't already.  I hope you feel better!

((Hugs))


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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3 minutes ago, icelandgirl said:

Hi Cristiana,

Have you tried DGL?  I had gastritis a couple of years ago and found it to be very soothing.  When I was in the worst of it I took it a few times a day.  Now when I get a little heartburn or anything like that I take one too.  Might be worth a try if you haven't already.  I hope you feel better!

((Hugs))

Hi Icey

How do you take it?  Is it a bit like slippery elm i.e. with water?

Txx

 

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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7 minutes ago, cristiana said:

Hi Icey

How do you take it?  Is it a bit like slippery elm i.e. with water?

Txx

 

 

It's a tablet...I chew it up and swallow...that's it.  Easy.


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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34 minutes ago, trents said:

I wouldn't know about that. But I think 20mg of Omeprazole is the most commonly prescribed dosage for that med. I believe it would be considered the "standard" dosage. But traditional antacids such as Tums and Gaviscon can be helpful in bridging when you are trying to get off a PPI and they should be well-tolerated. Ultimately, the way any of those things work is just to raise the PH of the stomach's contents, whether by reducing the amount of acid produced or by neutralizing it. But if you find that you are having to take antacids more than a couple of times per week after trying to eliminate the PPI you might as well go back on the PPI and live with as low a dose as will give you good coverage.

We sometimes lose track of the fact that people with GERD often have neurological or physical impairment of the esophagial sphincter mechanism. This means that the one-way valve closing off the stomach from the esophagus is not closing as tightly or completely as it should. Often, this is caused by a hiatal hernia that creates a distortion of the sphincter. So, in those cases the problem is not with he stomach acid itself but with where it winds up - in the esophagus and even into the throat/larynx/sinuses. Unfortunately, the only way to combat that is to reduce the amount of or neutralize the stomach acid. They used to do these surgeries where they lapped a chest muscle around the esophagus to simulate the sphincter (called a "lap nissen fundoplication") but that often gave undesirable results so when PPI's came along it was considered to be a non-invasive, more reliable and less expensive way of accomplishing the same outcome.

My GI doc contends that a lot of the negativity surrounding the use of PPI's is scientifically unfounded and has not been empirically demonstrated to be true. The bulletin board in his treatment room is covered with articles from medical journals that substantiate his claims. And this guy is a Seventh Day Adventist and if you know anything about that faith group they are very health conscious.

And it needs to be said that whatever remedies prove successful are vastly preferable to Barrett's disease and esophagial cancer. 

When there is impairment of the esophagus' closing mechanism such as can occur with a hiatal hernia, no amount of vitamin supplementation will correct that. Changing eating habits, supplements and elevating the head of the bed and other lifestyle changes can help but the underlying physical problem is still present.

So for me, who does have a hiatal hernia, where I'm at is making a patient effort to reduce the dosage of or possible get entirely off of PPI therapy but not at the expense of generating worse health issues down the line.

Wise words.  There are situations where it is totally necessary and would indeed be dangerous not to take it, such as Barrett's.  Certainly, if I do have to take asprin I will need to take a ppi (although I'm hoping by then there will be a way of taking aspirin without this issue!)

In the past I've been able to wean myself off omeprazole/ranitidine and have gone months without recourse to take them again.  Last time they checked there was no hiatus hernia, ulcers etc so I hope that nothing has happened since January.  I had that test because of a chronic cough - which lessened when I used gaviscon, and a wedge pillow.  Of course the latter exacerbates my upper thoracic pain (ribs and back) so I stopped using it!  

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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Hi folks.  Such interesting comments/perspectives!   

I totally understand why people rely on PPIs to control or reduce painful heartburn symptoms.  That makes sense because they certainly do that very well by significantly reducing the amount of acid contents in the stomach.  But I think it's a false sense of security to assume that PPIs will ever "protect you" from EC or "prevent" BE from turning into EC (or even HGD, a precursor).  I am not aware of a single study proving that.  In fact many studies show the opposite:  Here's one of the latest:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5224998/ .  If anyone knows of a single study (not funded by Big Pharma/PPI corporations) concluding that PPIs actually prevent EC, feel free to prove me an ignorant fool by citing it. 

Even my GI docs concede PPIs do not prevent EC and say the best way to minimize the odds of heartburn ever developing into BE....then....EC is by "death due to a non-GI cause or surveillance" (EGD/biopsies) on a regular basis.   

PPIs are prescribed solely to control the symptom/discomfort of heartburn.   But like most PPIs, they have very serious side-effects, and I found at least 1 study which links them to celiac:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3947159/)

IMO, PPI side-effect/safety issues have been ignored, minimized for DECADES because of the corrupting influence of corporate $$$ in the medical "industry" and the tendency of too-busy docs to feel it is not their place to question the wisdom of obviously-flawed Big Pharma-funded "studies" or marketing practices.  Only recently, after many GI docs began hearing reports of patients on PPIs long-term developing osteoporosis/fractures (already a risk with celiac), kidney failure, SIBO, and other problems unexplained by other medical issues/factors, did they start questioning PPI safety.   

In my case, I believe long-term PPIs/acid reduction totally screwed damaged my small intestine/digestion system.  I can't "prove" it, but it is just my "gut" feeling based on how well I functioned/felt before bombarding my body with this poison for 5 years and how I suddenly developed IBS/SIBO/celiac symptoms after years on PPIs.   I only wish my earlier GIs had at least mentioned that risk to me in 2014 to help me be aware of other options/choices BEFORE taking meds.  Had that been done, I would never have popped a single pill.  It is challenging enough deal with these sudden, later life health issues...feeling like I (even unknowingly) harmed my body is sometimes pretty hard to bear.

I feel for everyone who choses to remain on PPIs long term.  I only hope you carefully weigh your options, the risks.  If your docs decline, seem reluctant to even discuss those with you...I suggest you get another GI doc.  You DO have options!!

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Christiana, I forgot to mention how delighted I am to "meet" someone who lives in BC on this blog!

I am a HUGE Anglophile, from early childhood!! Rabid, lifelong fan of EVERYTHING British: Downton Abbey, "brit-coms," TV series "Victoria", JK Rowling/HP, Vivian Leigh, Julie Andrews, Dame Judy Dench, Petula Clark, Dusty Springfield, the Beatles, ALL of the "Emmas":  Watson, Thompson, and "Emma" (and anything else) by Jane Austen, the Brontes, Virginia Woolf.  I probably am so wild about British culture because it's in my blood: my distant family surnames trace back to Cornwall and Essex....

So are so fortunate to live in BC.  Such a lovely Canadian province...and such a humane, sensible health care system, where you don't have to end up fighting the cat/dog for scraps in old age because you had to spend all your money on medical bills...

Sorry to detour from the blog topic here...But it's kind of nice to take even a short break from thinking/obsessing about health issues...

Regards, 

Kate

 

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Some studies may never happen if not for "big pharma". Just because studies are done by big pharma doesn't automatically disqualify them as being legitimate. For all their evils, it may also be true that we owe a lot to the big pharmaceutical companies. And whereas you might find doctors who claim BE and EC are not linked to long term acid reflux, I don't think they speak for the majority of doctors. I would also add that most doctors I know have enough integrity to draw their own conclusions from the research that is available combined with what they actually see in practice. 

We do know that many neoplasms have their origin in long term processes that do damage to cells.

I am not one of those who believes all health problems can be corrected by vitamins and supplements. There is a place for traditional medicine as well as naturopathy.

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2 hours ago, trents said:

Some studies may never happen if not for "big pharma". Just because studies are done by big pharma doesn't automatically disqualify them as being legitimate. For all their evils, it may also be true that we owe a lot to the big pharmaceutical companies. And whereas you might find doctors who claim BE and EC are not linked to long term acid reflux, I don't think they speak for the majority of doctors. I would also add that most doctors I know have enough integrity to draw their own conclusions from the research that is available combined with what they actually see in practice. 

We do know that many neoplasms have their origin in long term processes that do damage to cells.

I am not one of those who believes all health problems can be corrected by vitamins and supplements. There is a place for traditional medicine as well as naturopathy.

I don't advocate vitamins, supplements, or naturopathy as a treatment for GERD or "all health problems".  I also did not say that big pharma-funded studies "automatically" disqualifies or renders them "illegitimate" or that BE/EC are not linked to LT acid reflux.  I merely said there are no studies to date showing that LT PPI use can prevent EC (2 different issues).  I also don't claim to speak for "a majority of doctors" or "most doctors" because I have never met/will never meet them.

I merely pointed out my own personal experience and how it and all the red flags I read about associated with LT PPI use has made me much more cautious in evaluating my options.    

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27 minutes ago, Kate333 said:

"But I think it's a false sense of security to assume that PPIs will ever "protect you" from EC or "prevent" BE from turning into EC (or even HGD, a precursor). I am not aware of a single study proving that . . . If anyone knows of a single study (not funded by Big Pharma/PPI corporations) concluding that PPIs actually prevent EC, feel free to prove me an ignorant fool by citing it."

My apologies if I misrepresented what you said but the remark about Big Pharma seemed to qualify your previous remark and imply (to me at least) that Big Pharma studies did show a link. Granted, I have not researched this.

But what I can tell you from my own personal experience is that PPIs did give me release from extreme discomfort (heart burn) and even, it seems, frequent sinus infections and hoarseness. Now I could be popping Tums or Gaviscon throughout the day but that would just be changing the gut PH in a different way with the same implications and would be far less convenient.

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58 minutes ago, trents said:

My apologies if I misrepresented what you said but the remark about Big Pharma seemed to qualify your previous remark and imply (to me at least) that Big Pharma studies did show a link. Granted, I have not researched this.

But what I can tell you from my own personal experience is that PPIs did give me release from extreme discomfort (heart burn) and even, it seems, frequent sinus infections and hoarseness. Now I could be popping Tums or Gaviscon throughout the day but that would just be changing the gut PH in a different way with the same implications and would be far less convenient.

No worries...I admit I am far too long-winded and my sentences often far too long and complex. Apologies if my comments weren't very clear.  I'll try to remember Hemingway's great advice for keeping sentences simple and brief! 😉

I am happy you are feeling better.  I just find it less stressful to avoid PPIs, get EGDs if recommended and have regular chats about symptoms via email and video (during CV) with my GI doc.  (Dr. Chao, is SO COOL...a cute young guy!!) He's super proactive about patiently answering my detailed Qs, providing encouragement, and even laughing/joking to put me at ease.  He even took time during his vacation in HI in Jan. to email and patiently answer all my Qs about gluten/IBS/celiac after I was first diagnosed!!   

Sorry you have sinus infections/hoarseness.  My allergies here in CA (trees/dust/air pollution from fires) are always bad but I notice getting much worse since I developed gluten/food allergy issues.🤧  I tried OTC antihistamines but no luck. I hope my G- free diet helps to eventually heal as my gut heals.   

Take care, and have a great week!  

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I seldom get sinus infections anymore or even common colds. Of course, a big part of that may be that I'm retired and don't get the exposure to viruses like I used to in my working years.

As I indicated earlier in this thread, I'm in the process of weaning myself off of my PPI or at least moving to a lower dosage.

Found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110863/#:~:text=Nonjudicious use of PPIs creates,calcium%2C iron and magnesium metabolism.

It indicates that vitamin and mineral deficiencies from chronic PPI use seems to be mostly a concern with the elderly and those on kidney dialysis. I guess I might fit that first category.

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35 minutes ago, trents said:

I seldom get sinus infections anymore or even common colds. Of course, a big part of that may be that I'm retired and don't get the exposure to viruses like I used to in my working years.

As I indicated earlier in this thread, I'm in the process of weaning myself off of my PPI or at least moving to a lower dosage.

Found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110863/#:~:text=Nonjudicious use of PPIs creates,calcium%2C iron and magnesium metabolism.

It indicates that vitamin and mineral deficiencies from chronic PPI use seems to be mostly a concern with the elderly and those on kidney dialysis. I guess I might fit that first category.

I hope you get off that stuff soon.  Here is a NIH study linking it to ESRD (end-stage kidney disease).  It's also been linked to dementia and osteoporosis. 

And PLS!! stay home as much as possible, socially distance, and wear masks if you go out.  I see so many people--seniors, even!!--risking their health/lives during this pandemic.  

Just now, Kate333 said:

I hope you get off that stuff soon.  Here is a NIH study linking it to ESRD (end-stage kidney disease).  It's also been linked to dementia and osteoporosis. 

And PLS!! stay home as much as possible, socially distance, and wear masks if you go out.  I see so many people--seniors, even!!--risking their health/lives during this pandemic.  

Oops.  Forgot the link.  Here it is:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772730/

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Hi Kate333,

I wonder if you were tested for celiac 5 years back before you started on the PPI's?  It's possible you had celiac disease back then I suppose.  People do go undiagnosed for years after all.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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14 hours ago, Kate333 said:

Christiana, I forgot to mention how delighted I am to "meet" someone who lives in BC on this blog!

I am a HUGE Anglophile, from early childhood!! Rabid, lifelong fan of EVERYTHING British: Downton Abbey, "brit-coms," TV series "Victoria", JK Rowling/HP, Vivian Leigh, Julie Andrews, Dame Judy Dench, Petula Clark, Dusty Springfield, the Beatles, ALL of the "Emmas":  Watson, Thompson, and "Emma" (and anything else) by Jane Austen, the Brontes, Virginia Woolf.  I probably am so wild about British culture because it's in my blood: my distant family surnames trace back to Cornwall and Essex....

So are so fortunate to live in BC.  Such a lovely Canadian province...and such a humane, sensible health care system, where you don't have to end up fighting the cat/dog for scraps in old age because you had to spend all your money on medical bills...

Sorry to detour from the blog topic here...But it's kind of nice to take even a short break from thinking/obsessing about health issues...

Regards, 

Kate

 

Hi Kate

Don't apologise for going briefly off topic.  Your discussion with Trents has been very interesting and eye opening for me.

But just to say I had an appointment at a BC - sorry - by that I meant breast clinic, not British Columbia, more's the pity.  I'm British though and looking at your long list I have to say we share a lot of the same tastes. The real Downton Abbey is about an hour's drive from me, and they filmed some of the episodes of Foyles War in my home town.   However, you don't mention the detective programme "Vera".   I wonder if you like it?  Filmed in Northumbria which is a stunning part of England and cept the hero is a middle aged woman who couldn't care less about the things that preoccupy most women of her age - a refreshing change.   There is at least one other fan on this forum but I'll let them introduce themselves if they so wish - I suspect they will be reading this!

C


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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