GERD, acid reflux, heartburn and hiatus hernia

Sasha said:
Do you actually have 'somatisation disorder' in your notes, JemPD? Or just 'ME/CFS'? I managed to get a SIBO test (positive) and antibiotics on the NHS some years ago with no problem.
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How on earth did you manage that Sasha?! I was under the impression that NHS gastros were mainly convinced that SIBO only occurs in people who have had part of their intestine removed.
But I'm afraid i do have it on my notes yes. Or to be more precise Somatisation Spectrum Disorder. My GP, who knew me well, and a consultant psychotherapist who saw me several times both disagreed with the somatisation claim, & simultaneously decided it was ME/CFS, which was later backed up by a neurologist.

But as the SSD was pronounced by a psychiatrist - who decided on it within 5 minutes of meeting me, wow she was an arrogant & superior 'person' - it stayed on there, for all to see. GP said he didnt feel he could remove it as it was given by a consultant. I dont think there would be a good chance of getting it removed now as it was given 20yrs ago & none of those people who could see it was nonsense are around any more. In addition since most Drs are taught that CFS *is a form of SSD/BDD/MUS etc etc etc i think it'd be an unwinnable battle that i am not up to anyway.
 
I'm so sorry to hear that, @JemPD. How horrible to have such a stupid thing stuck forever on your notes.

But it was very easy for me to get a SIBO test. I went to my GP, described my symptoms, said that I wondered if it was SIBO, and asked if I could have a test. He agreed and referred me. That was all there was to it.

It sounds as though your GP is sympathetic and realises that your SD diagnosis was rubbish. Why not just ask him? Nothing to lose!
 
Sasha said:
It sounds as though your GP is sympathetic and realises that your SD diagnosis was rubbish. Why not just ask him? Nothing to lose!
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Because he retired yrs ago sadly, otherwise i would have done. No one knows me there now.

Having done a bit of research online, i've read that SIBO testing & treatment is patchy across the nhs, bit of a postcode lottery perhaps.

I think its likely a waste of energy pursuing it, especially at the moment when it's almost impossible to get an appointment anyway, and every contact with a Dr is, for me, inordinately stressful and a bit of a tightrope walk. I only see them for things that have clear visual evidence - dodgy moles & pus filled infections etc. Nothing that's subjective. Its shit but there we are.

Anyway this thread isnt about me so i'll leave it at that. Thanks for your input & care @Sasha
 
I have been tested for SIBO. I found one apparent absurdity that I still don't understand.

From this link : https://www.verywellhealth.com/how-to-get-tested-for-sibo-4125868

When bacteria in the small intestine interact with sugar, they release hydrogen or methane. Those chemicals then come out in your breath.
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When I was tested the only thing they checked for was hydrogen. I thought they would test for methane too. There may be a perfectly good reason for this that I'm unaware of. But nobody explained the reason to me if one existed.
 
Arnie Pye said:
I have been tested for SIBO. I found one apparent absurdity that I still don't understand.

From this link : https://www.verywellhealth.com/how-to-get-tested-for-sibo-4125868



When I was tested the only thing they checked for was hydrogen. I thought they would test for methane too. There may be a perfectly good reason for this that I'm unaware of. But nobody explained the reason to me if one existed.
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Methane seems to be related more to constipation and the methanogenic bacteria may have a more direct impact on the MMC process- slowing down transit. The SIBO test we did was a 3 hour one and checked for both. The 3 hours should allow the lactulose solution transit the full length of the small intestine ( that's the theory anyway)
We used the Genova Diagnostocs test - SIBO Test | Small Intestinal Bacterial Overgrowth Test (gdx.net) interpretative guide SIBO-Interp-Guide.pdf (gdx.net)
Allison Siebecker's website is a good resource - About SIBO - SIBO- Small Intestine Bacterial Overgrowth (siboinfo.com)

ETA - extract from test results relating to methane
evaluation of CH₄. EVALUATION FOR METHANE (CH₄) Utilization of breath methane levels for SIBO assessment is controversial largely due to a lack of validation related to diagnostic specifics such as timing and magnitude of increase; however, CH₄ measurements are increasingly obtained to address other clinical questions. Recent evidence has associated CH₄ production with the pathogenesis of common clinical conditions, such as obesity, irritable bowel syndrome (IBS), and constipation. A peak methane level > 10 ppm at any point is indicative of a methane-positive result. • The peer-reviewed literature suggests an association with certain clinical conditions and methanogen overgrowth at levels as low as 3 ppm, CH₄ values between 3 and 9 may indicate the need for clinical intervention in the symptomatic patient. • ELEVATED BASELINE - An elevated baseline may be a more common pattern with CH₄ positive tests primarily due to the ability of methanogenic organisms to ferment in the absence of an ingested carbohydrate substrate. Methane gas itself may slow intestinal transit, and patients with CH₄-predominant bacterial overgrowth have been found to be five times more likely to have constipation compared to individuals with H₂ - predominant overgrowth. Moreover, the severity of constipation has been found to directly correlate with the CH₄ level. TOTAL HYDROGEN AND METHANE (H₂ + CH₄) Prior to the 2017 North American consensus paper on breath testing, it was common to report a positive result for SIBO with a rise in the combined sum of H₂ and CH₄. The North American consensus group does not offer guidelines for a combined value. The combined values are provided for clinicians who wish to have it displayed in this manner. CO₂ Carbon Dioxide (CO₂) is measured in every sample. CO₂ levels exceeding acceptable limits indicate room air contamination likely at the time of sample collection. If CO₂ levels exceed acceptable limits, sample integrity is questionable and results are designated as non-reportable (NR).
 
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I was diagnosed with silent reflux and what worked for me was changing my diet. As long as I stay away from my trigger foods I don't have anymore problems with reflux. For me Coke and Pepsi, chocolate, and coffee were what starts my reflux. Acidic foods such as canned tomatoes, tomato sauce, lemon juice, and vinegar would aggravate the reflux. However, once I did a reflux diet for about four months the problem went away. I can now eat the foods that aggravated the reflux at the time without any issues. As long as I stay away from my trigger foods I'm reflux free.

My doctor gave me prescriptions for PPIs and something else which I can't remember what it was called. Neither helped, and in fact, one of them sent me to the ER because it caused my heart to race. The other one made my throat feel tight and made it hard to swallow food for several hours after taking each time. I have since learned that some of the reflux specialists in the US have stopped prescribing PPIs for any longer than two weeks because they can do great harm to a person's body. Also, reflux meds cause the same harm to your gut bacteria as do antibiotics.
 
TigerLilea said:
I have since learned that some of the reflux specialists in the US have stopped prescribing PPIs for any longer than two weeks because they can do great harm to a person's body.
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There are people who need to take PPIs permanently if they take NSAIDs (for pain relief) permanently. I can't remember the reason why, but it is something to do with the effect of NSAIDs on the stomach lining. I took over-the-counter ibuprofen (an NSAID) in my 20s for severe pain that my doctors refused to prescribe for. I ended up with a duodenal ulcer, probably because PPIs and ranitidine were not available without prescription at that time and this was before the internet was "a thing", so my information on the effects of ibuprofen on the gut was non-existent.
 
The Effects of Modifying Amount and Type of Dietary Carbohydrates on Esophageal Acid Exposure Time and Esophageal Reflux Symptoms: A Randomized Controlled Trial.

Abstract

Introduction:
This is the first randomized controlled diet intervention trial to investigate both the amount and type of carbohydrate on symptomatic gastroesophageal reflux disease (GERD).

Methods:
Ninety-eight Veterans with symptomatic GERD were randomly assigned to high total / high simple (HTHS control group), high total / low simple (HTLS), low total / high simple (LTHS) or low total / low simple (LTLS) carbohydrate diet for nine weeks. The primary outcomes were esophageal acid exposure time (AET) and total number of reflux episodes derived from 24-hour ambulatory pH monitoring. Secondary outcomes were esophageal reflux symptoms rated using the Gastroesophageal Reflux Disease Questionnaire (GERDQ) and GERD Symptom Assessment Scale (GSAS).

Results:
Half of subjects were Caucasian and half African American (mean age, 60.0 ± 12.5 years; mean BMI, 32.7 ± 5.4 kg/m2). There was a significant main effect of diet treatment on AET (P = 0.001) and on total number of reflux episodes (P = 0.003). The change in AET in the HTLS group (-4.3 ± 3.8%) differed significantly from the HTHS control group (+3.1 ± 3.7%), P = 0.04. The reduction in simple sugars intake averaged 62 grams less per day. Subjects’ ratings of symptom improved in all carbohydrate modification groups, including significant reductions in heartburn frequency, heartburn severity, acid taste in the mouth, lump/pain in the throat or chest, and sleep disturbance.

Discussion:
A modification of dietary carbohydrate intake that targeted a substantial reduction in the intakes of simple sugars improved pH monitoring outcomes and symptoms of GERD that profoundly affect daily life. These findings provide a feasible and clinically applicable contribution to the limited objective data existing for efficacious dietary recommendations in the routine treatment and management of GERD.

Paywall, https://journals.lww.com/ajg/abstract/9900/the_effects_of_modifying_amount_and_type_of.424.aspx

Medscape article

Cutting Dietary Simple Sugars May Relieve GERD Symptoms, https://www.medscape.com/viewarticle/976850
 
There is only one comment (so far) in the medscape article.

I observed that high sugar in the instant coffee plus pulfer milk have accentued GERD ,especially in the more vulnerable persons. Esomeprazol +.Metoclopramide reduced significantly symptoms of GERD.
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Does this mean that instant coffee contains sugar by default in the USA? Or are people adding it later? I've read that both bread and milk contain sugar there, and so does pizza. I couldn't find a description of what pulfer milk was.

I think anyone trying to cut down on simple sugars in the USA is going to find it difficult.
 
Sasha said:
I hope it's OK that I'm posting about a non-ME/CFS problem but I've had worsening acid reflux and heartburn for a few months which is not better after four weeks of PPIs and Gaviscon, and I've just had a gastric endoscopy and been told I have a small sliding hiatus hernia.

My concern is that this is going to mean a lifetime of PPIs if I go the standard medical route, and they're already exhausting me. I'm concerned that having my stomach acid suppressed will mean long-term malabsorption of nutrients, on top of all the other things that PPIs are thought to put you at risk of (including dementia, possibly).

If I was already healthy this would be bad enough but I'm concerned that, coming on top of ME/CFS that already has me sofa-bound, the long-term consequences of these meds are going to be gradually devastating.

Googling has turned up some claims that various forms of physical therapy can help (specifically, certain yoga poses, various physical manoeuvres, breathwork to strengthen the diaphragm, etc.) but I'm sure that if I ask my GP about them, he'll know nothing and won't be able to refer me to anyone.

This stuff may or may not be rubbish, but given the alternative, I think it's worth a try.

Any suggestions for how to find someone non-quacky in these disciplines who would know about hiatus hernia? I'm in the UK and would need to deal with them via video link.
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Sasha, I hope by now you've gotten the help you need. My GI issues started when I was about 12--had been on high doses of adult aspirin and NSAIDs for severe juvenile rheumatoid arthritis, and when my mom told my doctors she thought I might have a stomach ulcer, they said kids my age didn't have stress and I was probably just trying to get out of school. When I was 14 and on vacation with my family, a deep pyloric ulcer perforated, requiring emergency surgery. Two results of that were a hiatus hernia and gastroparesis (the surgeon reasonably did a vagotomy, knowing I'd be at risk for future ulcers). I have needed famotidine and some type of PPI combined to deal with GERD, but luckily I've had no side effects from either. Interestingly, Dr. Hector Bonilla at the Stanford PACS and ME/CFS Clinic, whom I saw via telehealth for the first time on Aug 9, said it was good I was on famotidine, since it is an anti-inflammatory--I'd never heard that before. Anyway, I've lived most of my life not being able to lie down for an hour or two after eating solids, and I have Alka-Seltzer by my bed in case the heartburn is really bad.
 
SunnyK said:
My GI issues started when I was about 12
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SunnyK said:
when my mom told my doctors she thought I might have a stomach ulcer, they said kids my age didn't have stress and I was probably just trying to get out of school.
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I remember stupid attitudes like that from when I was a child. I was told that children couldn't be depressed. I was also told that I couldn't be in pain when no problem was visible. And I was assumed to be choosing to avoid school whenever I was sick.
 
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