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Three years down the road. Question re gut health

Mandymoos8 profile image
19 Replies

Evening all …after a little help please… it’s been 3 years since I was diagnosed with PA, I self inject regularly. That seems to be sorted.

I’ve Since been diagnosed celiac so strictly no tiger bread for me, booo. Iron transfusion in December as iron levels on the floor. So far I’ve managed to keep them up so could be celiac damage resolved by going gluten free.

Told gut health is not good at last endoscopy and have gastritis. Does this go hand in hand with PA. I can only think this is the reason for persistent fatigue and mood dips since everything else has been tested and I live a fairly healthy lifestyle. I’ve read gut health and mental health go hand in hand. I’d like to fix this.

No advice from GP re this - just “you may as well take some omeprazole and gaviscon and see how it goes” following endoscopy results and only because I persisted with “so what can I do about this”.

does anyone have any reference to point me to re gut health, diet, supps etc.

Much appreciated and thank you 🙏 x

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Mandymoos8
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jade_s profile image
jade_s

Autoimmune metalplastic atrophic gastritis (AMAG) goes hand in hand with PA, with damage occurring due to destruction of the acid producing stomach cells (parietal cells), and high gastrin with low stomach acid as a result. Here's a recent thread on this topic: healthunlocked.com/pasoc/po...

So if that's the situation, one would want to take things that increase acid production - betaine HCl, lime juice, apple cider vinegar, not reduce it further with PPIs and the like.

I've been meaning to write up my recent story but briefly, I had neglected to take lime juice for a year or two, and then did a gluten challenge a few months ago. My whole digestive system went haywire, everything slowed down, SIBO and reflux came back with a vengeance, my stomach hurt constantly, and I just felt horrid. On the endoscopy, they saw widespread gastritis, and biopsy showed the possible start of AMAG (but they didn't do it correctly so we don't really know). Of course I was prescribed a 6 month course of high dose PPIs!!

I got a 2nd opinion from my previous gastro, and long story short I took a course of antibiotics for the SIBO, restarted lime juice with large meals, cut out gluten, and voila - burning, reflux, stomach tenderness and pain - all gone (again). It was naive of me to think that fixing thyroid the last few years had fixed my low acid issue.

Now my functional doc & I are discussing some herbs & supplements to help heal the digestive system. I can't remember all of them off the top of my head but we settled on 3. Maybe they were NAC, Butyric acid, and something else? I don't even know if they will help - it will be an experiment - but the lime juice for sure works. It did take a few days for my system to readjust to lime juice & I did have some burning, but after a couple of days, it was fine & my stomach improved a lot. Was it high gastrin causing the gastritis? The gluten? SIBO? All of the above?

So that's just me, and I'm not medically trained, but there's more to "gastritis" than taking PPIs, especially if you have or suspect PA!

Unfortunately, as far as I am aware, there's not much in the scientific and naturopathic literature about treating PA related AMAG beyond taking B12 injections, but Narwhal and others may know more.

Glad that GF is helping your iron levels... it's a well know side effect of celiac.

Sorry for the long post.

EiCa profile image
EiCa in reply tojade_s

Hi Jade,

I am waiting to be scheduled for an endoscopy. I have all the digestive symptoms you describe and more. I asked my primary care doctor to test my serum Gastrin. It came out in low range. I thought that meant low stomach acid. Is that a wrong assumption?

I wish you well.

jade_s profile image
jade_s in reply toEiCa

That's good, hopefully the endoscopy will be informative, especially if they do biopsies.

No, if you have low stomach acid, Gastrin will be high. It's a hormone that stimulates acid production. It will go higher & higher as acid levels remain low. Did you fast for at least 12 hours and eat/drink absolutely nothing except for water before the test? It's apparently very sensitive to ingestion of basically anything.

I had gastrin tested last month and it came back normal 🤷‍♀️ lime juice still helps me.

SIBO can only be diagnosed with a breath test, can't be seen on endoscopy.

Good luck!

Mandymoos8 profile image
Mandymoos8 in reply tojade_s

Thank you so much Jade, this is so informative! I don’t trust GPs ever since my B12 was rock bottom at levels of 50 and diagnosed PA - he said “well you could have injections but you don’t want to be on them really for the rest of your life do you?” 😂 um yes I think I have to ??😂 so glad I asked the question on here re gastritis as don’t trust much of the conventional advice given these days.

Can I ask how much like juice you take and how and how long pre a meal? Thank you so much again, much appreciated x

jade_s profile image
jade_s in reply toMandymoos8

Omg that's terrible!! I could go on but will bite my tongue! Like you i also now double check everything. Otherwise we'd stay sick, or worse!

I had to measure it cause I just give the bottle a big squeeze 😂 it came out to 2 to 3 tablespoons. I mix it with water in a standard drinking glass. I only take it about halfway through the meal or even at the end, otherwise it just burns. If I eat an exceptionally large meal I might take another 1 Tbsp - at some point you can just feel the food just sitting there so then i take more. I usually just need it at dinner though i'm experimenting with breakfast & lunch.

You might start off with just 1 Tbsp or even less, especially now if your stomach is inflamed. Don't burn your stomach 😬.

I hope it helps!

Mandymoos8 profile image
Mandymoos8 in reply tojade_s

Apologies replied to the wrong post but thank you and for sharing your story, not too long at all if it helps one or more people!

jade_s profile image
jade_s in reply toMandymoos8

No worries. :) Forgot to add above, you're very welcome!! :)

wedgewood profile image
wedgewood

Pernicious Anaemia patients have no or low stomach acid (Hypochlorhydria/ Achlorhydria) , because the Intrinsic Factor Antibodies that they produce destroy the parietal cells in the stomach . These cells not only produce the Intrinsic Factor needed for the absorption of vitamin B12 , but also stomach acid , also needed for absorption of other vitamins and minerals. So to take a PPI ( Proton Pump Inhibitor ) like Omeprazole, or an antacid sms the worst possible thing to do . The lack of stomach acid upsets the stomach flora ( good bacteria ) and causes bad bacteria to take over . This causes stomach problems . I can only say that taking a probiotic helped me out of this problem . ( Symprove ) Natural probiotics can also help ( organic sauerkraut , organic yoghurt , kefir and kimchi ) We read a lot more about the importance of gut health nowadays . It’s so important for our immune system . jade_s suggestion of lime juice is good . Others take diluted organic apple cider vinegar before/ during meals . Now that I self inject b12 my stomach has settled down , and re-established it’s good bacteria , I no longer need to take a probiotic . A good balanced diet is also important .

I hope that you can solve your problem . It amazes me that GPs don’t know that P.A. patients have low / no stomach acid , and prescribe PPIs . Stomach acid is very important for breaking down our food to release vitamins , minerals and trace elements . It also helps to keep bad bacteria at bay . Best wishes .

Mandymoos8 profile image
Mandymoos8 in reply towedgewood

Thank you so much, I do take a pre and pro biotic combined supp once a day but now wondering about the quality and if this is enough. Will do some more research on this I think. Thank you for the information v helpful to help glue it all together 😊

Hypopotamus profile image
Hypopotamus

Apple cider vinegar with the mother will help. I take Water Kefir that I make myself. The improvement is amazing. I now supply six other people with the Kefir, all of whom have found the same improvement in their gut health.

wedgewood profile image
wedgewood in reply toHypopotamus

Would you be so kind please and let us know your recipe for Water Kefir? .Thank you .

Hypopotamus profile image
Hypopotamus in reply towedgewood

Making Water Kefir

Stage one.

Put 50 grams of raw cane sugar and 50 grams of white sugar into a half litre Pyrex measuring jug.

Add one eighth of a teaspoon of black molasses.

Add 250ml of boiling (filtered) water, and stir to dissolve the sugar.

Top up to 500ml with cold (filtered) water, and stir again.

Leave to cool until it is around body temperature.

Move the sugar solution to a Kilner jar.

Add 2 level tablespoons of Kefir grains.

Stir, place lid on but do not clamp down.

Put jar in a dark cupboard for 48-72 hours. Teperature affects how quickly it ‘brews’.

-------------------------------------------------------

Make a sugar solution of two level teaspoons of raw cane sugar dissolved in 250ml of hot water, then add another 250ml of cold water. (Use only filtered water)

-------------------------------------------------------

Stage two.

Pour contents of Kilner jar through a nylon sieve (do not use a metal sieve) into a wide necked jug.

Use the Kefir grains in the sieve to start another batch.

In a 500ml bottle place 50ml of pure apple juice and 50ml of sugar solution.

Add the filtered Kefir leaving a one inch gap from the top of the bottle.

Place stopper in bottle, shake it well, and leave it in a cupboard for another 48 hours.

It is then ready to drink, but be careful opening it.

-------------------------------------------------------

You need to keep repeating this process to keep the Kefir grains alive. If you need a break, you can place the Kefir solution produced in stage one in a sealed Kilner jar, and keep it in the fridge for up to 10 days. When you restart, sieve the solution to retrieve the Kefir grains, then throw the solution away.

Equipment required.

A water filter that will remove chlorine and fluoride etc from the water.

A 1 tablespoon (15ml) measuring spoon.

A teaspoon.

A 500ml Pyrex measuring jug.

A half litre Kilner jar.

A nylon sieve.

A jug wide enough to get the sieve over.

A small plastic funnel.

Some bottles with caged stoppers.

wilko.com/en-uk/wilko-swing...

For the first three days do not drink more than a shot glass (50 ml) of the Kefir per day. You may get slight side-effects like bloating or excess wind but these should go away once your gut gets used to the bacteria in the Kefir. You can then increase your daily does carefully, noting your reaction to it.

wedgewood profile image
wedgewood in reply toHypopotamus

Thank you very much for such good instructions . Great !

Mandymoos8 profile image
Mandymoos8 in reply toHypopotamus

Ah thank you for sharing! I’m in awe of how well informed people are and taking health back into their own hands 😊

Mandymoos8 profile image
Mandymoos8 in reply toHypopotamus

Thank you so much ! Would you take apple cider and lime juice or one or the other, also how much pre a meal would you suggest?

Hypopotamus profile image
Hypopotamus in reply toMandymoos8

I take my ACV about 15-20 minute prior to my main meal.

Hectorsmum2 profile image
Hectorsmum2

A very nice way to take cider vinegar is in a drink called 'switchel'. It is easy to make but you can also buy online, contains honey, ginger, cider vinegar. I add spices such as turmeric, black pepper, cinnamon. Easy to find recipies if you google and I think ginger great for gut health as well as the cider vinegar. Try and avoid the PPI's.

Narwhal10 profile image
Narwhal10

Hi Mandymoos8,

Apologies for delay in replying. I’m sorry to read all you’re going through. Others are far more knowledgeable about AMAG than me and have given great advice.

Yes, the gut and brain are intrinsically linked. Inflammation of the gut may also cause inflammation of brain too. So, brain fog and fatigue. Plus, people may have joint pain, skin problems. Turmeric is a wonderful natural anti-inflammatory. The proper stuff that makes your hands orange.

In a nutshell, by taking lime juice, apple cider vinegar or betaine HCL it will help break down food, so gets absorbed and then building blocks of neurotransmitters (chemicals that work on nerves) like dopamine levels (linked to motivation and reward), serotonin levels (sleep, appetite, ability to feel happiness) as examples may improve. As does taking other essential micronutrients (a multivitamin).

Please do not underestimate fatigue, when exhausted because of over doing it the day before or poor pacing, it can be common that symptoms are exacerbated and mood drops. It can simply called ‘payback’. It’s finding your base level of activity and then slowly building up. (It does happen to me - 1 day of week is snuggle-down day if I cry at a silly TV program, then so be it).

Gut microbiome can be affected in both coeliac disease and P.A./B12 deficiency so, probiotics and probiotics can be beneficial. Research on gut microbiome is relatively new but it influences mood, appetite, sleep pattern what we eat and even how slim we are.

I take glutathione (private dietician asked me). It’s an antioxidant. Perricone C, De Carolis C, Perricone R (2009) Glutathione: a key player in autoimmunity.

pubmed.ncbi.nlm.nih.gov/193...

Everyone is different so it’s finding what works for you. I also take a couple of amino acids so, I can have a swim in the morning. Then home, fall into bed and a very relaxed afternoon as symptoms generally ramp up. I take opportunity to try and expand my knowledge.

We are essentially gastro patients but we rarely talk about what we excrete. One of the most important clinical signs, I believe, is our stools. They should be a certain colour, consistency, shape and even odour. The Bristol stool chart was designed for a purpose.

First book I read which gave me better insight into mood and gut was Datis Kharrizhan’s Why Isn’t My Brain Working ?

I hope that is of some use.

Mandymoos8 profile image
Mandymoos8 in reply toNarwhal10

thank you so much for your long detailed and very helpful reply and sorry for the delay! I’m in a bit of a fog about what to take when but am determined to not take the ppis. Recently have had chest ‘rushes’ which I was anxious might be cardiac symptoms but doc is convinced it is reflux and therefore to take the ppis. It makes me anxious and wonder whether to try them for two weeks but I’m more drawn towards following good gut health so going to see it out and hope I’m not doing more damage. Thank you for the links and suggestions and the link between gut and mood makes so much sense. I’ve always been a positive energetic person and recent months feel a shadowy recluse more apt. My sparkle has flown! I will have a good look at what you’ve suggested and others and see this thing out and keep the hope candle burning ! ♥️ Thank you again 🙏

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