Interesting summary of PA on nhs website

[Luac]

I read the following paragraph to a nutritionist and I think they didnt believe it. I have PA but also suspected chronic pancreatitis in spite of healthy pancreas in scans, no pain, bloating or weight change. I want to supplement with acid in a healthy way with their advice. They've said - do not take any acid in any form, do not take any multivits or minerals ever, dont self treat b1, take more artificial enzymes to make myself constipated and manage that with laxatives. I asked should i be constipated all the timevand they said yes! They do not want to accept that low stomach acid even exists. I feel that the following paragraph sums up my issues completely (note of course that the loss of parietal cells is what causes lack of intrinsic factor and thus the ability to harvest b12 from food):

"Pernicious anaemia is an autoimmune disorder that results in inflammation and damage to the stomach lining, and loss of cells that produce stomach acid (parietal cells), digestive enzymes and mucus."

nice.org.uk/advice/mib40/ch...

I think my enzyme issues are PA related, not CP.

Any thoughts on this?

[Luac]

I have just looked up parietal cells and they are responsible for production of hydrochloric acid and intrinsic factor. I really cant believe the ignorance regarding treatment.

FYI - i started taking AC Vinegar tabletd and had huge improvements to my stool (poor stool quality is indicative of malabsorption and I had low fecal elastase). I stopped taking tablets as it can be damaging to take too much and I want to supplement with medical supervision.

[Nackapan in reply to Luac]

Yes bowel habits can tell you alot about whats going on with health and absorbtion and too much tok little fat ect I was constipated before b12 deficiency found

Doing all the right things.

Water . Good nutrition exercise.

No one listened.

Read common with the menopause. Blamed for too many symptoms that were actually b12 depleting.

Medics should know this.

Why offer a 50+ health screen ?? Which turned out to be a waste if time. Basics not covered . Bloods not done.

Hind sight hey

( menopause being being the trigger with hormonal changes) for a well woman clinic surly known.

Preventative work wax my bread and butter .

Unfortunately hard to prove savings and outcomes.

On b12 loading doses I was alarmed at bright yellow stools.

Then worried about liver. Or neuro problems

Again noone interested or gave any reasons .

I remember a family doctor always asked as I was mortified at the time as young.

Hence remembering.

I thought changes ect in basic training of health professionals

We were taught to examine babies stools .

Even had a photo picture chart. !

Meconium

Breastfed stool - whats normsl

Allergy stool

Ect ect

I thought both conditions would be involved.

A friend with chronic pancreatiititis had awful digestive issues . Was always better on antibiotics??

Hope yiu see a medic with the right knowledge to help you

[Gambit62 Administrator]

Hope you find the help you are looking for.Unfortunately that you came across a nutritionist that doesn't seem to be able to think beyond generalisations and focus on the patient in front of them. I don't think they are necessarily trained in the needs of specific conditions beyond a few obvious ones.

[Luac]

The only thing they agreed with was it didnt sound like chronic pancreatitis. I have another appointment with them on the phone on monday coming, that should be interesting as my gp did not get a follow up letter from my last appointment outlining treatment.

[Littlelodge123]

If you had chronic pancreatitis you would know all about it. It causes severe pain. A GI doc would also be able to see the inflammation from an MRCP. I know a couple of people with pancreatic enzyme failure who use the term interchangeably with pancreatitis. They are not the same but the latter can cause the former. I’m not convinced pancreatic insufficiency is caused by PA either otherwise far more people with PA would present with low fecal elastase which is the test for pancreatic insufficiency. The pancreas, as far as I am able to understand, responds to the chyme when it enters the duodenum. From my understanding, the acid in the chyme signals to the pancreas to produce enzymes to mix with the chyme to allow absorption of vitamins and minerals in the small intestine. I’m not medical but I have a good gastroenterologist and I have confirmed PA and EPI. Taking more digestive enzymes such as Creon won’t help you digest your food any better. Creon has about 25000 lipase units in one tablet. Your pancreas produces up to 780,000 if it is healthy snd working optimally so Creon won’t make you constipated if you take more. Not sure if any of that helps but thought I’d share my views in the event it helps any.

[Luac]

It absolutely does make me constipated, the nutritionist said that's how you know it is working! I think I would rather state I have EPI than CP but two gastroenterologists have told me they think i have CP. MRI scan was clear - healthy pancreas. I requested an mrcp but was told it was unnecessary. Parietal cells are needed for some enzyme production and are used in acid production too, it must have some effect.

I am aware some PA sufferers have gastro issues while others have more neuro issues. I think I read somewhere that a third of EPI sufferers have PA too.

[Littlelodge123]

Wow. I need to do more research about the PA EPI link. Of the 20,000 on here that would mean nearly 7000 have EPI. Not sure it’s that high. MRCP is a specific type of MRI which examines your biliary tree and it would be able to detect more accurately pancreatic and biliary function than plain MRI. I suspect your doctors just don’t want to do it. That said a plain MRI will detect pancreatic shape etc and hence inflammation. I’m amazed how medical people get basic terms wrong. I was in hospital visiting my mum who was dying of pancreatic cancer. She was given Creon in her final days and said to the Nurse that her son took these but not as he had cancer. The nurse said oh he must have chronic pancreatitis. Emm no I don’t! Really irks me!

[FlipperTD]

Scientist, not medic.

I don't want to start a war, but when I read 'nutritionist', I always wonder. 'Nutritionist' is not in itself a protected title. Anyone can describe themselves as a nutritionist. A dietitian however is a registered professional, and unless someone is registered by the HCPC, then we don't know anything about their training, professional standards or continuous professional development. If they don't comply with the very strict rules of the HCPC, then they can be 'struck off' from the register.

I'd start by consulting a registered doctor, and ask for a referral to a dietitian, but that's simply my opinion.

[Luac in reply to FlipperTD]

Thank you, it is good advice. This was a referral by my gp and was a hospital nutritionist. I dont know if I can request a nutritionist that understands PA but I will make the point of asking.

[FlipperTD in reply to Luac]

Cheers for that. Having spent many years as a registered scientist with a protected title, there are some terms that offend me. 'Laboratory Technicians' for example, in the recent Covid Testing foul-ups. 'Lab Techs' means nothing. 'Biomedical Scientists' are the professionals.

Likewise, I'd be cautious if anyone calling themselves a 'Nutritionist' because that's not a protected title either; it could literally be anyone. A Dietitian however is a completely different beast! At least the NHS should employ HCPC registered people. [It's a visible register on the web and so it's possible to check your practitioner's status.]

I hope you find a dietitian who can help you.