BethattheBeach

[BethattheBeach]

I'm 61 and living in Australia. I was diagnosed with PA in March 2015 (Chronic atrophic gastritis with no Intrinsic Factor) and am having maintenance B12 injections every 3 months. I am considering self injection because my symptoms return around week 7-8 and I am pretty worn out by week 12. I have not been able to find any information on the foods to avoid for my overall good health and this is the most urgent question I have. GP said no alcohol, carbonated drinks or coffee and prescribed Nexium for reflux which I have never had.I have stopped Nexium as it made me feel sick. When I asked about diet the specialist said,"Go live your life and come back when you have diabetes or thyroid disease." Not a lot of use. Any websites with recommendations?

[Gambit62 Administrator]

You need folate in order to process the B12 you are being given and best source is food - so just look up foods that are good - brocoli is good - spinach also good (but lousy for iron).

It may be that you have low acidity in your stomach as well as the gastritis give your age - which can cause the reflux - and you will probably have difficulties absorbing most nutrients from food when that is combined with gastritis.

Alcohol is definitely bad - though how bad depends on your constitution and the occasional tipple is unlikely to cause any permanent damage.

Listen to what your body is telling you - its generally quite good at telling you when you need something though the nature of the craving can be a little difficult to interpret.

You definitely aren't alone in finding 3 months far too long for maintenance shots - and there doesn't seem to be any real evidence for it - in Germany maintenance is every month.

[BethattheBeach in reply to Gambit62]

Thanks, Gambit62. We have always eaten steamed broccoli several times a week and I am growing spinach in my vegie patch, so I should have that covered. Alcohol has been easy to pass - I'm a bit terrified of stomach cancer. Strangely, the specialist said to avoid supplements as much as possible but I am having trouble following his advice! Do you know of any sites with relevant discussions of diet?

[Gambit62 Administrator in reply to BethattheBeach]

Generally speaking these days cancer really isn't the death sentence it once was and they can do a lot with surgery providing the cancer hasn't got to the point of spreading to other 'organs'.

What you have had so far isn't cancer though. If it is something that runs in your family then that may put you at higher risk but still think the risks are really quite low (even with the B12 deficiency).

Yes, I go a bit ballistic inside when doctors start pontificating about supplementation being bad for you - somethings may be a bit tricky but the way they either delay, or fail to properly treat B12 deficiency really does leave you wondering how much any of them understand.

I'm not sure about dietary discussions - if stomach cancer is your big worry then there are probably fora on your local Cancer society charity website that would give you good info. You could also try looking to see if there are any likely communities on health unlocked - if you choose browse communities option under my Communities you can search by key words - probably is something on Health Unlocked that might be suitable but it isn't really something that I spend a lot of time worrying about ...aside from being vegetarian I probably have quite a good diet (though sure I've got too much sugar in it :() and my body does tend to tell me when I've had too much of something and need more of something else.

We have diabetes running in the family so possibly been a lot more aware of diet from an early age.

You might find that a site for coeliacs comes up with some good hints - and there is probably quite a bit of discussion of good diet on diabetes sites - there are a couple of diabetes forums on here and diet seems to crop up there occasionally.

Note: diabetes in my family is MODY - so a specific dominant gene that means you will develop diabetes if you have it, and I don't though my brother and mother do). If there is a history of diabetes in your family then it may be worth looking at MODY as it is frequently mistaken for type 2 but the treatment is generally rather different so misdiagnosis doesn't help - is closer to type 1 than type2.

Good luck in your search. Possibly others on here that might see this and respond with some more specific advice on the diet.

[BethattheBeach in reply to Gambit62]

Morning, Gambit62. Your response is reassuring. No, there is no stomach cancer in the family (though there is breast cancer). I just stress at the thought of cancer eating away what is left of my tummy! However, my mother surely had PA. It is tragic to look back at her many years of what was diagnosed as stroke dementia when it is pretty obvious it was PA. I do not know what her B12 levels were but I'm adamant I do not want to head down that path. Mum did develop mature onset diabetes, though. I feel very grateful the doctors were clever enough to join the dots and come up with my diagnosis. It is just their treatment that has a few holes! I will continue to have endoscopy every few years to monitor any cancer should it develop.

I, too, am inclined to hit the sugar in my otherwise pretty good diet. (Husband has been gluten free since the late 70's so we do not use processed food at all. I think I get so tired I use sugar to keep me going.

I will have a look on the other forums for more ideas and get on to some B supplements. Thanks for your help.

[wedgewood]

Get a different doctor IMMEDIATELY!!! That is shocking that you have been prescribed Nexium a P.P.I. (Proton Pump Inhibitor) I have been recently told by a gastroenterologist that, as a P.A. patient, I should assume that I have low or no stomach acid (Hypo or Achlorhydria). which brings gut problems. And then you are prescribed Nexium, which will deplete you still further of stomach acid! The anti bodies that cause the destruction of Intrinsic Factor,which stops absorption of B12, also attack the cells which produce stomach acid. I have stomach broblems which have been more or less eliminated by taking a water-based probiotic. I also take organic raw cider vinegar diluted in water with some honey twice a day.(helps with the acid)

I also am only given an injection every 3 months, though I start feeling unwell again after about 3 weeks. Now, I self inject with Methlycobalamin.I drink alcohol and coffee occasionally ,with no ill-effects. You need to start self-injecting. It will make such a difference. I hope that you were told to make sure that you get plenty of folate(B9) . Viatamins B12 and B9 need eachother.Or you could take a Vitamin B complex.

I don't know why the medical profession is so ignorant about P.A. But, don't forget, the pharmetceutical industry isn't interested either,as the remedies for it are natural products, which cannot be PATENTED(i.e. no big bucks can be made!)No research done. Hope that this has helped a little.

[Gambit62 Administrator in reply to wedgewood]

Note: living in australia you can actually get B12 over the counter at a pharmacist.

[BethattheBeach in reply to wedgewood]

Morning, Wedgewood. To be fair, I must say the PPI script was given in the early days before the endoscopy but it was up to me to say, hey, this does not feel good. An extra complication is that I do not have the Intrinsic Factor Antibody but I do have a gastric Parietal Cell antibody. I think I just do not produce the Intrinsic Factor. What kind of gut problems are you referring to? I have suffered chronic constipation forever but the doctors never really responded to my inquiries.

Your comment about Cider vinegar is interesting. I have been worried that if my small intestine (ilium) is ruined then acid forming foods might exacerbate the problem. I have a nurse-friend who is researching for me too because information is thin on the ground.

Specialist told me to avoid supplements! No mention of B vitamins or foliate. My Vit D and Calcium were below par so I am taking those. I think I need a good specialist who will sit down with me and explain exactly what is happening in my digestive tract. Pity there is not a support group in Australia.

Thank you Wedgwood, you have given me some good leads.

[LadyNZ in reply to BethattheBeach]

Do you think consulting with a nutritional doctor would help? I'm pretty sure there are a few of those in Australia. None here in NZ, or only about one and miles away from me!

[BethattheBeach]

Yes, Gambit62, I learnt that yesterday when reading this forum. I actually store the vials at home waiting for the 3 month appointment with the nurse! So, that is going to change very soon. I will discuss with the doctor and then make up my own mind.

[BethattheBeach]

Hi LadyNZ, what do you mean by a nutritional doctor? Certainly, I need someone to answer my questions and reassure me. BTW, I emailed you - have you received my message? There was a message saying your address was irregular?? I sent it anyway; just wondering if it went through.

[LadyNZ in reply to BethattheBeach]

Yes, I have it Beth and am about to email you back.

[BethattheBeach]

Absolutely no rush - just wanted to check!!