PA related Gastric issues?: I was... - Pernicious Anaemi...

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PA related Gastric issues?

AngieZ profile image
17 Replies

I was diagnosed with PA about 4 yrs ago, after almost a decade of complaining to many docs about being exhausted all the time. I'm 49, Canadian. I give myself subcutaneous injections once a week. My doc wants me to cut back because my elves are 'high' but any less and I'm tired again.

Today I had a gastroscopy which showed a 'tiny hiatal hernia' and 'fundic gland polyps'. Doc also took biopsy to 'rule out autoimmune gastritis'. He said on the sheet he found 'nothing of concern' but when I started googling, I got concerned.

I'd like to hear from others who have/had gastric issues related to PA, please. What issues, and how were they treated? Thanks!

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AngieZ profile image
AngieZ
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17 Replies
Maxfactor1 profile image
Maxfactor1

Hi,

I haven't got the problems you have but I've definately got gastric changes since being diagnosed with pa. I find I get terrible stomach noises, diarrhea, bloating, constipation and simply can't eat many of the foods I used to!

I have to wait three months between injections and can become quite ill at the two month mark.

I hope all goes well for you and you find relief from your symptoms.

Hibbieknight profile image
Hibbieknight

I have the same issues as mazfactor1. Although not serious they really do affect your day to day life. Does anyone have any helpful tip?

Ahernj profile image
Ahernj

I have auto immune gastric atrohy - like you it took 10 years before a diagnosis and 3 mini strokes later. I give myself Intra muscular B12 injections two monthly (sometimes sooner if I need to) and have regular gastroscopies on the Specialist requst (2 yearly) to check for any changes in my stomach . Gastric atrophy puts you at greater risk of stomach cancer. I also find I cannot eat certain foods, i.e spicy, dairy, fats etc. I have medication to ease any pain and discomfort I may experience if I inadvertantly eat something that doesnt agree.

I was diagnosed with this auto immune condition almost 20 years ago and find I manage it very well. I wish you all the best in your journey.

Jan

Many have gastric issues, and these issues seem very diverse. Some also have other conditions such as celiac disease, or crohns or gastic athrophy or autoimmune gastritis, H Pylori, parasite infections, bile salt malabsorption etc. B12 treatment preparations can also give upset stomachs, other B vits can etc..

Some info to links here:

emedicine.medscape.com/arti...

emedicine.medscape.com/arti...

pernicious-anaemia-society....

pernicious-anaemia-society....

pernicious-anaemia-society....

Kind regards,

Marre.

AngieZ profile image
AngieZ in reply to

Thanks Marre! I'll check those sites.

Gambit62 profile image
Gambit62Administrator

Not got gastric issues I'm afraid - though know they are very common in B12 deficient patients.

However, on the issue of your levels being high - this isn't an issue.

There are no known problems with B12 levels being high.

A study did show a correlation between cancer and B12 supplementation, but as B12 Deficiency is known to put you at higher risk of cancer and those supplementing in the study would all have been B12 deficient that is more likely to be the cause than anything else.

There is a theory that because B12 promotes cell reproduction it may mean that cancer cells also reproduce faster.

Although not Canadian you may find the following useful:

a) CDC in US - though they use cyano and I think canada uses hydroxo

cdc.gov/ncbddd/b12/patients...

b) The Dutch equivalent of PAS

stichtingb12tekort.nl/weten...

c) UK site providing information on B12 deficiency - facts on use of hydroxo-cobalamin in treating cyanide poisoning

b12deficiency.info/b12-trea...

AngieZ profile image
AngieZ in reply to Gambit62

Oh ya, I go by how I feel and my doc is good, he listens to me. In Canada cyano is the norm. My doc said he wouldn't even know how to prescribe anything else, and I haven't been able to find hydroxo or methyl. I would like to try the others to see if I feel a difference, if I could. About a year ago or so there was a severe shortage of injectible b12, and no pharmacy had any. I finally found a pharmacy that compounded it, for about 5 times the cost, but it was worth it! Thanks for the links, on case I need info for doc.

Ctb567 profile image
Ctb567

Hi, I've just been diagnosed with PA and I also have a hiatal hernia but apparently its common, I was told that 1/4 people they do endoscopy's on are diagnosed with them. I have also had IBS since I was 2 which may be to with my PA, I'm not sure. Theres not really a treatment for the hiatal hernia

cefjarth profile image
cefjarth

Have you tried taking digestive enzymes?(prozyme) and increasing stomach acid (HCL + pepsin). People with PA have low stomach acid(read dr d'adamo's book eat right for your type). Also mega strength probiotics? This helps with digesting foods(bloating after eating is a sign of inferior digestion). unless you eat live cultures(kefir, live yoghurt, sauerkraut etc), you won't have enough good bacteria in gut for proper absorption of nutrients from food. Check with naturopath re hcl + pepsin first though as not recommended if u have colitis, gastritis, ulcerative conditions. GPS generally know nothing about these. Just a thought...

AngieZ profile image
AngieZ in reply to cefjarth

Interesting. I've read that if u have fundic polyps though it's due to high stomach acid. Maybe I'm mistaken. I have had ulcer like symptoms (treated with 'pink Russian', lidocaine-Malox mixture at ER) but no doc has officially diagnosed as ulcers yet. So maybe that might not be the solution for me. Thanks for the info tho. I'll keep it in mind.

MarkoP profile image
MarkoP

I have also auto immune gastric atrophy. But I'd stay out of those digestive enzymes. When I tried them but my stomach was so upset.

I've also tried HCL and pepsin. Heartburn.

They may help some people but I have not found any relief.

Just eat good, healthy and organic food. Lots of green stuff and veggies. I am going to throw away all the expensive probiotics. I've spent too much money on them.

/M

AngieZ profile image
AngieZ in reply to MarkoP

Probiotics haven't seemed to do much for me either. But it may be the type, there's so many strains. Yes, eating healthy is always the best thanks.

freelancer profile image
freelancer

I was diagnosed with PA about five years ago and about a year or so later found that my continuing chronic fatigue lifted almost entirely when I cut out gluten (as an accidental side-effect of a low-carb diet).

I stuck with this and for a while after going gluten-free I had no gastric issues (and hardly ever had previously), but after a while my reactions to accidentally eating gluten changed from sleepiness and brain fog to gut reactions. I later became lactose intolerant (which is improving now) and developed some problems with soya (tofu etc) and quinoa.

I've never really got to the bottom of this and rather assume I'm probably an undiagnosed coeliac and eat accordingly as I'm not willing to go back on gluten for another test, which is quite restrictive. The trade-off is if I stick to the foods I'm OK with I generally feel well these days!

I had a gastroscopy when first diagnosed and discovered I had a hiatus hernia but have never had any noticeable issues as a result.

AngieZ profile image
AngieZ in reply to freelancer

I tried going gluten free for 6 weeks with no apparent differences. And I've been tested for celiacs a couple times and results were negative. But thanks!

weeluvpa profile image
weeluvpa

I have had PA for 18 years and always had stomach problems which I never looked in to but just accepted. However, I have recently been diagnosed as having Coeliac Disease through anti-body blood tests and a biopsy and am now gluten free. After two months on a Gf diet I am now free from the bloating, pain, diarhorrea and nausea etc. Still waiting to see a dietician but the Coeliac Society website and staff have been so helpful and my GP agreed to arrange a prescription for GF staple foods. Worth getting checked out.

AngieZ profile image
AngieZ in reply to weeluvpa

I've been tested and negative for celiacs a couple times, and going gluten free for 7 weeks did not seem to make any difference unfortunately. But thanks.

AngieZ profile image
AngieZ

I've had lots of digestive issues. But I've also had my gallbladder removed. I've had an anal fissure (extremely painful), ulcer-like symptoms (no official diagnosis), constant diarrhea basically, gas, lots of stomach noises. It's only more recently that I thought it might all be related to PA. And now with the gastroscopy results, I'm pretty sure it's connected. I just was curious to hear others stories of gastric/digestive issues. Thanks for all the replies!

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