Please help: Gastrointestinal symptoms

[FelineGhost]

27 year old female, diagnosed with anti-parietal cells 6 years ago.

I'll try to keep it as brief and succinct as possible ...

I have severe gastrointestinal discomfort. Every single day of my life, without fail. Doesn't matter how well I eat. My diet is immaculate yet I get extremely bloated, have trapped wind all the time - which I often describe as feeling like shards of glass in my stomach, and I alternate between diarrhoea and constipation. I'm in a lot of pain from the moment I wake up.

I look after my health - exercise every day, eat healthily, don't drink any alcohol or smoke.

I'm told by health professionals that my anti-parietal cells are nothing to do with the gastrointestinal symptoms, and I have IBS (which, admittedly, could be the case) but my symptoms are constant and no single IBS treatment has worked for me.

I can't say I'm an autoimmune expert, by any means, but from what I know of anti-parietal cells/pernicious anaemia, parietal cells secrete hydrochloric acid and intrinsic factor; essential to digestion.

Now, I have tried everything to try and get some relief: all the IBS diets, fasting, only eating salads, cutting out all sugars including fruit and carbs, herbal remedies, anti-depressants, peppermint oil, laxatives... the list goes on.

Can anybody shed some light on my situation? Is it something, since anti-parietal cells cannot simply be cured, I just have to accept and deal with?

Is anybody else who tested positive for anti-parietal cells experiencing this?

HAS ANYBODY FOUND ANYTHING THAT HELPS?!

Sometimes I don't even go out of the house because I'm in so much pain or my symptoms mean I can't get out of the bathroom.

I'm at my wits end, and this condition severely impacts my confidence, self-esteem, and mental health.

Please, if anybody comes across this and has any thoughts, I'd be so grateful.

[Laura5]

Just sending sympathy. I was also diagnosed positive for antiparietal cell antibodies several years ago. I have the same symptoms except pain and I'm also sure that it must be something to do with low stomach acid. Sorry I can't help with any solutions, I spent years trying different things as you have. I think I've come to terms with living with it now but I'd feel much more desperate if I was in pain. Hope someone else can give you some hope for a solution.

[fbirder]

If you have PA then you have low stomach acid, which can cause the problems you describe. Try taking some acid with large meals. I prefer about 30 mL of lime juice in a glass of water. Others swear by apple cider vinegar. I used to take pills or capsules containing betaine.HCl, but found it difficult to get the dose right.

You might also want to check out a low-FODMAP diet. Many with IBS find it causes great relief of symptoms. monash.edu/medicine/ccs/gas...

[FelineGhost in reply to fbirder]

Hi fbirder. Thanks for your response. I do take acid before meals already. Apple cider vinegar in liquid form, and I have the tablets too.

I've tried hcl tablets in the past and with all of this, I didn't notice any improvements.

Tried and tested the low-FODMAP diet too. I should have included this in my original post.

Maybe it is just about accepting it and continuing with the supplements ... I'm just hoping that somebody eventually suggests something that's really made a significant difference to them!

[Nackapan in reply to FelineGhost]

Hello. A family member did fodmap for a long time before getting to know what to eat or nor to eat. Now gluten free diary free fructose free. Caffeine and alcohol free. No fuzzy drinks . No fruit teas. No responsibility meat. Also little and often helied at regular times. Saurkraut and similar good to try. It takes a long time. Have you had investigations . An endoscopy. Are you seeing a gastroenterologIst? A slow methodical approach and start again. Record record. Have you been tested for H pylori? Seen a nutritionist?

White bread and less wholefoods help some. I do hope you get some relief . It sounds miserable.

[Sleepybunny]

Hi,

"told by health professionals that my anti-parietal cells are nothing to do with the gastrointestinal symptoms"

Another name for PA is auto immune metaplastic atrophic gastritis.

Gastritis means inflammation of the stomach lining

nhs.uk/conditions/gastritis/

[FelineGhost in reply to Sleepybunny]

Hey Sleepybunny.

I've looked into this myself and feel this is me, I just don't know why it's never been something a health professional has really considered.

Maybe if I do some deeper digging into this atrophic gastritis, I'll find a community of people who've devised some strategies that really help.

[Sleepybunny in reply to FelineGhost]

Hi,

Have you considered joining PAS? I'm sure they could pass on info about gastritis.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

[EllieMayNot]

I have the parietal cell antibodies and a lot of similar symptoms. My GP told me to take either betaine HCL with meals or apple cider vinegar. Just started but can't say I notice anything yet, need to figure out the right amounts. Just learning of the low-FODMAP diet, you may want to take a look at the link that fbirder provided. Dr. Myhill claims that fermenting sugars in the gut can be the cause of a lot of issues which is essentially what the low-FODMAP diet is supposed to remedy.

[FelineGhost in reply to EllieMayNot]

Hey EllieMayNot. Thanks for your response. I do take acid before meals already. And I've tried hcl tablets in the past too but didn't notice any difference - not to say this will be the same for you. Maybe there'll be some improvement in your symptoms in time. I hope so anyway!

Tried and tested the low-FODMAP diet too. Which is why I feel it's not IBS, and it's the anti-parietal cells that at the root of my issues.

I'm just hoping that somebody eventually suggests something that's really made a significant difference to them, which may do the same for me because it's so unrelenting!

[wedgewood]

Have you tried Symprove , a water -based probiotic ? It worked wonders for me when I had IBS symptoms . It’s unfortunately expensive , but worth every penny . I took it for about 3 months . You need to establish a colony of good bacteria ( flora) in your gut . Fermented foods help as well —- Organic sauerkraut , real joghurt, kimchi are good probiotic foods . ( you can make them at home )

I wish you all the best in getting better . I can remember how extremely debilitating my gut problem was . I could not function properly at all . Best wishes to you .

[FelineGhost in reply to wedgewood]

Hey wedgewood.

Yep, tried symprove. I take it every morning ... something my dad fortunately helps me out with because it is an expense, like you say. It does help a bit, but I still struggle every day, with everything that I eat.

I could probably incorporate more fermented foods into my diet. I've recently been having sourdough bread, and have tried yoghurt and saurkraut in the past.

I'm pleased to hear you've found a way of improving your gut problems. Long may this be the case for you!

[Sleepybunny in reply to FelineGhost]

Hi,

"I've recently been having sourdough bread, "

Have you considered going gluten free?

A lot of people on the forum have found a gluten free diet helpful.

Were you checked for Coeliac (spelled Celiac in US)?

Coeliac Disease

In UK, two first line tests are recommended. Did GP do both?

1) tTG IgA

2) Total IgA

If in UK, I suggest reading guidelines below.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

[lownskater52]

Hey CleoA. I'm sorry for all of the issues you're going through with IBS. I know very much how you feel as I've experienced almost every symptom you described chronically. First off, have you tested low for b12? Secondly, how long did you fast for? I've done long fasts on strictly water only and have found them to be extremely powerful for my digestion. It really saved my life. Here is a good place to start. I've been there and done it: . youtu.be/FJrBtGnNgds(Not working as expected?) I'm happy to send you a PM if you want more information. Unfortunately for me now my digestion is comprised again due to very low b12 for over 10 years so I'm bloated frequently that leaves me breathless and just have terrible digestion in general. Still a long way off. Let me know if I can help.

[FelineGhost in reply to lownskater52]

Hey Lownskater52. Sorry to hear you've experienced all of this as well! It's a nightmare. My B12 levels were 530 the last time I was tested, so fairly stable really. I have my injection every 12 weeks, and take oral supplements on the daily too.

I've only ever done 12-24 hour fasts, and have wanted to go for longer but not got there yet. I always feel so much better when I'm on an empty stomach but I get so tired and low in energy.

This video looks good though, so I'll have a watch, see what I think, and drop you a message if I need some more info!

Ahh, is there any way you can up your b12 levels to tackle the bloating and terrible digestion?

I really hope something is discovered to alleviate these issues for people like us!!

[lownskater52 in reply to FelineGhost]

Cool lemme know. I promise you it's the answer.

[Daffodi1]

Hi, so sorry to hear of your debilitating symptoms. My daughter (30) suffers exactly the same. Thankfully for her she has periods where it doesn’t affect her but then something will trigger it... no rhyme or reason. She seems to suffer mostly just before she needs her B12 and usually around her period. She started running and has felt a lot better, and like you, eats very well. I’ve heard Symprove is good, also apple cider vinegar or lime juice. She’s reluctant to use any of those so would be interested if anything works for you as your symptoms are, as I said earlier, EXACTLY the same as my daughter’s. Good luck, I feel for you.

[FelineGhost in reply to Daffodi1]

Hey Daffodi1.

Thanks so much for this. It's comforting to know I'm not alone.

Sorry to hear about your daughter. She really does sound very similar to me. My symptoms get worse around my period too, and thanks to the influx of hormones, I tend to feel even more despairing and emotional about the whole GI mess I'm living with.

Does your daughter have a good support network out of immediate family? Just because I sometimes find it a very awkward topic to discuss because I feel a lot of shame, which I know I shouldn't because I can't help it. But it's difficult as a young woman, having embarrassing bodily functions

I run regularly too, which helps a lot with improving my mood, but doesn't make a dent in the symptoms. Symprove is part of my routine as well. As is apple cider vinegar!!

The symprove does help me a tiny bit, so maybe your daughter could give that a go? The cider vinegar... I can't really say I've noticed much of a difference.

Good luck to your daughter. I feel her pain!!!

[Daffodi1 in reply to FelineGhost]

My daughter does have quite a supportive manager, but obviously the conversations are limited. He mainly noticed the fog and general malaise when she finally got diagnosed with B12d. ‘Sharing’ with friends is difficult as the whole situation can be, as she describes it, quite violent! One thing you might want to try is massage. Was going to post a link but it won’t work. Will try to PM you with it. She’s also found limiting the amount of food she eats in one go, choosing to eat little and more often. Also stopping eating early in evening. Good luck.

[JanD236]

GI problems, along with exhaustion, were my two main symptoms of PA.

The biggest improvement I had was when I took a 3 month course of a probiotic called Symprove. I felt improved within a matter of days. I now take a maintenance dose once a year and also randomly try out other probiotics. I’m careful to eat plenty of probiotic and prebiotic foods to help.

I feel better for taking betaine HCL & pepsin with meals. Also I’m better eating lightly. If I overeat I know about it with much increased discomfort.

Although my GI problems of severe bloating, constipation, stomach pain and feeling over full after small meals are reduced they never completely go away. If I have a long run of problems I find that the only way to stop it is to have a few days of eating very lightly, to the point of fasting. I discovered this when I had an endoscopy and colonoscopy and had to fast for a couple of days before and then have a clear out with a magnesium compound. After that I felt the best I had in years and the feeling lasted for a few weeks.

[FelineGhost in reply to JanD236]

Hey JanD236.

I already take symprove every day and have supplemented with betaine HCL with pepsin in the past. Pleased to hear these work for you. With the HCL supplement, could you send me a link to the one you're taking please?

EAting lighter meals helps me a lot as well, and my goodness if I overeat, I really do suffer a lot.

I don't know that my GI problems will ever really go away either. I hope you don't mind me asking, but what's your age and gender? Just because none of my friends who are mostly of a similar age to me, are dealing with this and I keep being told this disorder is generally associated with women 50+ and it can feel quite isolating.

Fasting definitely helps me, it's just difficult when you're an active person, working full-time, with commitments outside of work too. I can manage a day but after that I feel quite exhausted. The symptoms lift but it's not curative because as soon as I eat and the food has sat in my stomach for a bit, I'm right back to the symptoms again.

[JanD236 in reply to FelineGhost]

Hi CleoA. Sorry I can’t send you a link from my phone but I buy the Betaine HCL & pepsin from Amazon. I use either the Now brand which is 648mg of HCL in a capsule or Health Plus brand which is half the strength but not in a capsule.

As a late 50s woman it looks like I’m in the usual demographic for PA from what you say. I suspect it started in my mid 40s though.

When I say fasting, I do still eat but probably under 1,000 calories. So maybe I should have said very light eating for a day or 2. Like you I need my energy and a total fast would be too much!

[LadyBothwell]

sorry to hear about your symptoms, I have had the same, for as long as I can remember from about age 19 (I was told I had an eating disorder) to diagnosis in my 40s now in my 50s. I didn't find a perfect solution but did find coping strategies and foods to avoid by trial and error. Definitely recommend acid before/with meals - apple cider vinegar, pineapple juice - don't give up on it - persist even if it is an acquired taste. Yoga and running has helped me mentally and a recent important step was that I typed up on an A4 sheet how PA impacted me, what I felt like, why I couldn't do certain things etc with various links and quotes from this site which I gave to family members and close friends and health professionals who were sometimes less than supportive. It made a significant difference - I think they had no idea and thought I was making it up! Hopefully you will find something that helps you and the support here will Im sure be invaluable.

[montague53]

Hi CleoA, I feel your pain, I have terrible gut problems and Pernicious Anemia. My Naturopath put me on to these amazing Gut tablets, that are really great. They still cause a bit of bloating but have changed my life. She said they are the best on the market. They are called Biogest by Thorne. They have HCL plus pancreatic and bile enzymes, so help to break down food and heal your stomach. I was having infection after infection, and within two weeks of taking these tablets over six months ago, I have had zero infections. You take one with a meal 2 to 3 a day.

[mountmuir27]

Gastro recommended l-glutamine for gastritis, powder form that dissolves in water vs. capsules, taken in high doses (2-3 times the amount the label advises). It does help. There are valid clinical studies on l-glutamine for gastritis.