Hi all…
After years of neglect by NHS, I was in a sorry state and went private. Tests showed I had PA plus SIBO, lots of gut damage and dysfunction. Having had lots of treatment, things are much better. But, despite self injecting , optimal b12 treatment and lots of gut help, I have ongoing gut issues.
I wondered how normal this is with PA? Do PA sufferers routinely have ongoing gut issues? What helps them?
Prebiotic and a total diet changed helped my daughter.
It took time and fodmap as a base helped. .
She was also supported but not directed by a hospital dietician.
This helped with recordings and outcomes documented on her medical notes .
She's still restricted but eats more of a variety now .
Too much of one thing can bring back s day of bloating or nausea ect.
It was quite extreme.
She still is gluten ,diary and Fructose free .
Can't tolerate onions
Only garlic infused in oil and similar things.
No eggs but has started to try in a very diluted form .
Almond milk suits her and is fortified.
Eats fish .
Built up to chicken.
No red meat yet.
A slow process over yesrs in her case .
Prebiotic can help.
Cider vinegar or juice near the end of a meal.
Hope you find ways to help
thanks. I found the NHS useless on this and have had four years of private treatment with functional doctors. Sounds like your daughter may have SIBO. Mine is cleared now but I still have ongoing gut issues. I can now eat most things again…I was down to just four foods at one point!
Issues with Garlic and Onions may be related to their fructan content:
ncbi.nlm.nih.gov/pmc/articl...
Yes. .Fructose intolerant as mentioned in above post .It's interesting some foods introduced back can be tolerated in small amounts or diffused diluted forms .
As a child only thing disliked was cheese.
All above stemmed from B12 def.
Then giving autonomic disorder.
Fructose and Fructans are different things. The difference is in the digestibility.
"Fructose is a monosaccharide absorbed by the body, whereas fructans is an oligosaccharide undigestible in the body."
A low fructan diet is certainly possible but it would be virtually impossible to have a fructose-free diet - fructose is present in almost all foods.
pediaa.com/what-is-the-diff...
Yes.But can be eaten in very small quantities at one time.
This is what my daughter does. complex .
This is just what I've seen work.
At one stage narrowly avoiding tube feeding.
So the person needing the change csn look into fructans
Fructose in detail.
Fodmap a good base .
Often smaller quantities of certain foods that aggivate at meal sittings can help .
All ideas to look into.
As we know text book v experience differ
yes I think FODMAP elimination and then careful reintroduction can work well - this is a good anecdotal account from Gil of how he helped his mum cure her IBS with this kind of technique:
in a word yes. I suffer from SIBO regularly and take herbal antimicrobials prescribed by a nutritionist. Some people here have found probiotics useful but there is very little scientific evidence for their efficacy and they do not work for me especially not on their own. I have struggled with gut dysbiosis for about 5 years since my PA dx.
thanks. My SIBO has been cleared but I was wondering whether ongoing symptoms is just ongoing autoimmune attack on the gut.
Yes I’m not sure either. Gluten Free helped a little but like you still have ongoing issues. My gastroenterologist said it was ‘just’ dysbiosis after a raft of diagnostic tests.
Are your issues in the stomach or the gut ?
If it's the gut you may consider trying gluten free eating to heal the gut.
What medications are you taking ? Any supplements ?
thanks, have been gluten free for years. No meds but tonnes of supplements. Got nowhere with NHS so I see private functional specialists. I had multiple nutritional deficiencies and gut malfunctions…low acid, no digestions, slow transit, constipation etc. Have fixed a lot of it but was wondering whether some degree of gut malfunction is normal with PA.
I have PA and some atrophic gastritis. I have found that if I drink kefir in the morning on an empty stomach it really helps me. The bio type not sweetened just natural. I also recc regular endoscopy and colonoscopy as a check to make sure all ok . Apparently higher rates of stomach cancer with PA. good luck 🤞
I make my own Kefir and drink in the morning. Has made a huge difference to my gut. I have PA.
How do you make it?
a friend shared some kefir grains with me and I add to milk. Leave for 12 hours. Then strain. You can buy starter kits on line too. Etsy or Amazon. East to make. Better for you than store bought. About 25% of the cost. I add Chia seeds to about 1/2 a cup of finished kefir and leave in fridge overnight. Eat next morning.
CRK
i tried making my own kefir without success. I think my house is too cold or the temperature too variable at least as an old house and can’t afford to keep it at a constant temp.
I am curious why homemade kefir is better than a man organic bought kefir? Also any tips on how I could make homemade kefir?
I also tried water kefir but I find it hard to tell if it’s worked - again possibly because the house is not a constant temperature. My kefir grains been in the water for two weeks now are they ok or do I need to start again?
Great post. Thank you for sharing.
CRK1 - Thanks for that & all the other replies! I used to make my own whole milk Greek yogurt. Pretty easy; I'd take about (sorry this isn't metric! 
) 3/4 of a gallon of the milk, raise it to 185 degrees F, then cool it to about 115 degrees & add a 4oz container of Activia probiotic yogurt, and keep it at 115 degrees for about 18 hours, then strain the whey out for the Greek style. Really delicious and much cheaper than buying pre-made. I'll have to give the kefir a shot!
I use to make my own Kefir but I'm lactose free now, so can you make Kefir from lactose free skimmed milk? I loved my home made kegir 😋
I haven’t tried this but I know you can make from plant based mills so worth a try. But kefir is naturally low in lactose.
You can also get water kefir grains and make milk-free probiotic drinks. I've just bought some online as my daughter is lactose intolerant and we both need probiotics.
I don't know if PAs routinely have gut issues but I certainly do and my IBS predates PA. But I think I've had a deficiency for many years. So I always regard gut and B12 as closely related for me.
I've been seeing a Herbalist and he suggested Pro biotics as they get into the large intestines without feeding the SIBO lime some prebiotics can, I take Saccromyces Boulardii, which is a friendly yeast. I've got on well with it, and I also take activated charcoal capsules to help remove the bacteria, but I do also have Bowel Acid Malabsorption, so they help with That too. I understand that SIBO can deplete B12 as well 😔 the Bowel Acid Malabsorption certainly does that too, joy..
Like others I have used Fodmapping to remove the trigger foods and then very slowly reintroduced them.
I have also found foods high in histamine were causing issues.
Two things that healthy eating leads you to are oats and green leaves. Surprisingly oats was one of my biggest issues and still struggle with green leaves causing problems. So usual dietary advice via nhs made things worse not better.
I have used a holistic practitioner who in effect was treating me as if I had “leaky gut” and certainly worth looking at.
The thing that does help me is gentle exercise combined with a bit more more fibre eg in fruit and veg eg skins left on etc. Fruit not juice etc. I now avoid wholemeal or nuts and a swap to white flour bread and pasta soothed things. Fibre feeds the gut bacteria and it has slowly improved things, but if I over do it I know about it.
I also have an HCL and pepsin tablet as a back up if I am having a heavy meal as it seems to help stop digestive problems arising after the meal.
Good luck
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