reflux help please: hi, i have... - Pernicious Anaemi...

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reflux help please

Happysmile profile image
37 Replies

hi, i have autoimmune illnesses, graves(thyroidectomy, so now under active), severe B12 deficiency, etc. Since having covid in March for the first time, I developed changes to my voice and some issues swallowing. I had had a tube down my nose to check for swallowing issues before this happened and all looked good. Then got a chest x ray which was also good. Since then feelings in my throat of classic reflux changed to feeling very sick in my stomach and throat. Enough to be unable to do normal activities. I have some good days without many or any symptoms and then I have awful days. I asked for an endoscopy due to the risks from B12 of stomach cancer and to find out why this is happening, but am not sure if this will be approved. I don’t want to start ppi’s as i’d like to sort the cause if possible, rather than the symptoms. Am taking apple cider vinegar, aloe vera, optibac probiotics, manuka honey and avoiding triggers.

Any help or advice would be really appreciated.

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Happysmile
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37 Replies
clivealive profile image
clivealiveForum Support

Hi Happysmile

I "swear by" Gaviscon as I suffer with reflux issues.

I and not medically trained and wish you well.

Happysmile profile image
Happysmile in reply to clivealive

thanks Clive, I am trying gaviscon, but it doesn’t seem to be helping much. I will persevere 👍

Wheat profile image
Wheat

hello, I had reflux and this can be caused by low stomach acid (doctors usually think its too much acid and prescribe accordingly ie ppi );

B12D often means low stomach acid and digestive problems. Its one of the symptoms according to my gp.

I have autoimmune disease. Have upset stomach and nausea; pain and swallowing difficulties some days. I am at beginning of my B12 self injection journey but I expect my stomach and swallowing problems to improve over time.

ppi's reduce stomach acid dramatically. I found Betaine HCL and I could digest again then suddenly ineffective, however I found that apple cider vinegar and lime juice is better. The ACV has stopped my reflux and really helps digestion. I take 1 tbs each meal and before bedtime.

We are taking the same things. I have become dairy/ lactose intolerant. Cheese causes me reflux when I weaken occasionally. Hope you find your answers, that this is helpful.

Best wishes.

Sneedle profile image
Sneedle in reply to Wheat

Hello, could I ask if you take the 1 tablespoon of ACV in water?

Does the concentration of ACV in water matter?

On my bottle it says 25ml daily, I'm trying to figure out if it matters if the 25ml is diluted into multiple glasses of water over the whole day.

Thank you.

Happysmile profile image
Happysmile in reply to Sneedle

hi @sneedle. I started taking the liquid with water, lemon juice and honey through a straw, to avoid my teeth. However, I’ve recently started the capsules to save the faff and swallow them with water before my evening meal. I doubt the concentration matters, but am no expert.

Sneedle profile image
Sneedle in reply to Happysmile

Aha you're taking capsule form? Do you think they're helping?Which brand is it?

Getting bit fed up of the liquid too..

Happysmile profile image
Happysmile in reply to Sneedle

I chose the longevity company, avc with mother. Just went by reviews. I think it does help, just need to up from once a day I think.

Sneedle profile image
Sneedle in reply to Happysmile

Great thank you!

Happysmile profile image
Happysmile in reply to Wheat

Thank you. My thoughts exactly on low acid. I haven’t tried lime juice though, so will get some. So, you are taking ACV 4 times a day? Maybe I need to up mine. Thank you for taking the time to reply.

Wheat profile image
Wheat in reply to Happysmile

hello, yes the lime juice i use is ready squeezed called Funkin, and its quite strong so i take it mid breakfast, yes about a tbs in a little water. I freeze excess in ice cube tray.

Happysmile profile image
Happysmile in reply to Wheat

i’ll try this, thank you.

wedgewood profile image
wedgewood

Reflux can be caused by having low stomach acid which is a feature of Pernicious Anaemia . The oesophageal sphincter fails to close tightly if stomach acid is weak , which is the case in Pernicious Anaemia ( NICE now calls it by it’s correct name of autoimmune gastritis ) Parietal cells are destroyed by Intrinsic Factor antibodies . Parietal cells produce Intrinsic Factor AND stomach acid .

If you are obtaining sufficient B12 injections , you can take PPIs for a short time or a stomach acid suppressing medication like Gaviscon

This will not impact on your B12 absorption , but only if you get sufficient b12 injections, as b12 will be going directly into your blood . Taking PPIs or Gaviscon will lower your stomach acid severely. This will impact on all vitamin and mineral absorption.

You are taking such good care of your gut health .The water based probiotic called Symprove helped me with my gut issues . Also a porridge breakfast is wonderful for the gut . It contains something called Beta Glucan which helps good gut bacteria .

Best wishes .

Happysmile profile image
Happysmile in reply to wedgewood

Thank you for your reply.Luckily I am able to inject 3 times a week, but am concerned about ppi’s and their affect on absorption of vitamins etc. I didn’t know Gaviscon does the same😩. Like you I have porridge and love Symprove. I try and vary the probiotics I take and will go back to Symprove next I think. I just feel like I’m doing all the right things and dome days there is a definite improvement, other days it’s just awful, hence my frustration. Hopefully, it’s just time that’s needed 🤞

PaintLadie profile image
PaintLadie

I do bitters before a meal for the GERD. They help surprisingly well and will help heal the stomach in the process. They are herbal in nature and here in the USA you can find many dropper type tinctures of bitters. With the dropper you drop several drops on your tongue before you have a meal and yes they taste bitter. The bitters send signal to your stomach to start making acid. So you have to take them before you eat and they work best with consistency. I've used them with success, but the GERD is never totally gone just manageable and the herbs have helped calm the inflammation in my stomach. I also have a tendency to forget to take them when the issue subsides, but they do work well when I can be consistent.

Happysmile profile image
Happysmile in reply to PaintLadie

thank you i’ll look into this.

wedgewood profile image
wedgewood

You can make your own Swedish bitters by purchasing the dried herbs and marinating them in vodka or making a tea from them

And Gaviscon does neutralise stomach acid .

Happysmile profile image
Happysmile in reply to wedgewood

gaviscon 😩this is why I try and avoid meds unless vital. So many side affects.

wedgewood profile image
wedgewood in reply to Happysmile

I agree absolutely!

am111 profile image
am111

I have severe GERD and it is related to B12 deficiency. GERD is not necessarily caused by high acid, actually, it is caused by LES (lower oesophagus splinter) weakness, which is possibly due to some weak nerve. I have to take PPI, else I cannot even breathe, as the acid in my oesophagus leads to a severe asthma-type of situation. I hope to get off them when my regular B12 injections cure the LES. If you can manage with a simple antacid like gaviscon, it is better, as the side-effects of gaviscon are much less compared to a PPI.

Happysmile profile image
Happysmile in reply to am111

sounds awful, hope you improve. Yes i’ll stick to gaviscon and try to increase my acid.

Orchard33 profile image
Orchard33

Perhaps let your stomach and alimentary canal settle after invasive procedures.I would strongly recommend an H2 Blocker not a PPI. The latter can make matters worse. The former are much gentler and I found more effective.

Re cider vinegar: suggest you hold off on that for a while whilst things are settling.

Orchard33 profile image
Orchard33 in reply to Orchard33

And B12 does not cause stomach cancer. My digestive issues have improved greatly since EOD SI of B12.

Happysmile profile image
Happysmile in reply to Orchard33

I used to have terrible ‘ibs’ which totally disappeared with b12 injections. I thought B 12 deficiency it put you at risk of changes to the cells in the stomach lining, I guess maybe due to low stomach acid. ,

Happysmile profile image
Happysmile in reply to Orchard33

i’ve not had the endoscopy yet, but totally agree it all meeds calming snd healing. Thank you. Do H3 Blockers not cause side effects?

Orchard33 profile image
Orchard33 in reply to Happysmile

I've not had side effects from H2 blockers. And I've always found they worked effectively to alleviate reflux. PPIs on the orher hand always seemed to make matters worse and are linked to stomach damage leading to PA.

jointpain profile image
jointpain

Could you please explain why you used these words " I asked for an endoscopy due to the risks from B12 of stomach cancer" And where you got the reference from.

Happysmile profile image
Happysmile in reply to jointpain

I was under the impression autoimmune gastritis meant there is a risk, albeit very small. It’s probably no more likely than for those without, but wanted to rule it and other possible causes of the reflux symptoms, out. I think the draft nice guidelines mention it. I may be wrong.

Cornwaller profile image
Cornwaller

If you go onto YouTube and search reflux exercises there are some useful videos on exercises to help control reflux. These plus gaviscon initially as required should help get things under control.

Best wishes

Happysmile profile image
Happysmile in reply to Cornwaller

thank you, I will have a look.

Nonameme profile image
Nonameme

Interesting read. I have a Hiatus Hernia along with Diabetes 2 and have been on both PPI,s and Metformin for at least 20 years but my GP has refused me any further B12 injections and upped my Metformin so at present I am suffering.

Any advice would be greatly appreciated.

Happysmile profile image
Happysmile in reply to Nonameme

sorry to hear this. Maybe chat with the Pernicious Anaemia society. They were so helpful for me and my daughter when we were unwell with B12 deficiency. I do hope you get what you need, it’s horrible to suffer.

Rexz profile image
Rexz

Here's a response I posted several days ago regarding digestion issues for those with true PA. True PA being actually diagnosed with PCaB or IFaB or both along with classical B12 deficient symptoms. In other autoimmune PA or Autoimmune Metaplastic Atrophic Gastritis (AMAG).

healthunlocked.com/pasoc/po...

I had acid reflux for some time before my digestion issues started and then as my digestion issues got worse until I eventually could not keep food down (I lost 90 pounds) my acid reflux disappeared! When we finally figured out I have zero stomach acid my GI prescribed me a PPI. Fortunately I happened to know this was incorrect and did not take them. I also never saw that GI again. But the point is, especially if you are older that acid reflux is caused by too little acid rather than two much. Even if you think about it logically for people later in life when simply the aging process as you get older your body produces less and less gastric acid so if you never had acid reflux and you start getting it now then you most likely have too little acid.

I have no Gastric acid so here's what solved my digestion issues. I take the following before each meal:

1 capsule 1.3 mg of Betaine HCI (A plant based hydrochloric acid) from Integrative Therapeutics.

2 capsules of PANPLEX 2-PHASE digestive enzymes, also from Integrative Therapeutics.

Although these were prescribed by my doctor they are available OTC and you can purchase both on Amazon.

You may want to try a lesser dose of Betaine HCI first. I think they have a .350 mg and a .650 mg dose. Then build up from those. These will not hurt you so no harm in trying. Who knows they may solve your problem.

Here in the US standard of care for those first diagnosed with PA they receive a upper GI endoscopy to screen for Gastric cancer and do a Gastric mapping biopsies IAW with the Sydney Protocol. I suggest all with autoimmune PA to demand this be done it may just save your life. I had this done one month after my diagnosis and guess what they found? Cancer, fortunately for me they found it early enough they were able to excise it through endoscopic mucosal resection and that completely removed it. My point is don't mess with this. I'm now considered high risk and have this cancer screening done every six to eight months.

I believe the UK uses the MAPS II guidelines for this called Gastroscopy.

Anyway, lots of words. Hope some of them help. Rexz

Happysmile profile image
Happysmile in reply to Rexz

wow, very interesting, thank you. I’m so pleased they treated you in time and now monitor you. I had an endoscopy years ago, and it felt weird asking for another as they aren’t exactly much fun, but feel this should be investigated to rule everything out. I am saddened that the cause of problems are not always looked into, but appreciate the nhs is broke. It would however most likely save them a lot more money if they did treat the cause. Anyway, I will look into the products you mention and raise them with my GP too when I go armed with test results. . Poor GP. Again, thank you for your comments.

jaybirdxNHM profile image
jaybirdxNHM

A post by WiscGuy on B12 status in health.( Very Long).It states tha there are various cancers that involve B12. I am not a medical scientist ,so can't review this paper, maybe one of our contributors that can or at least give an informed view will comment, please.

Happysmile profile image
Happysmile in reply to jaybirdxNHM

that would be helpful 🤞

Hockey_player profile image
Hockey_player

I found PPI's very helpful. You could also try buying a wedge pillow so that your head is more elevated when you are sleeping.

Happysmile profile image
Happysmile in reply to Hockey_player

i was thinking of a wedge pillow. So many to choose from 😩

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