What next/ question for those with AIAG/ PA

[JennaShi]

I will try and mot blow up the feed pf this group, thank you for answering my questions.

For those with both Autoimmune Gastritis and PA, what do you do to help maintain your health, besides b12 injections? Who do you see in regards to both of your issues or do you see a separate doctor for each?

I guess I am asking what next as for me personally my Gastro doc has given me a few options but the only thing involving him is watching to see if things progress. It sounds like he doesn’t get to many people with AIG.

[EllieMayNot]

It is important to find a practitioner who understands autoimmunity as rarely does someone suffer from just one AI condition. Personally, I have had no luck with any specialist that I have seen in the past and my most favorable experience has been with a functional practitioner (I am in the US). As soon as autoimmunity was discovered (I have several different conditions) I was started on an autoimmune diet and low dose naltrexone. This has helped to bring down antibodies on several fronts and also helped to relieve some symptoms. It is only recently that the AI Gastritis and PA have been uncovered so B12 was immediately started nearly two months ago. Interested to hear what others have to share. Always something new to learn!

[fbirder]

PA is caused by Autoimmune Metaplastic Gastric Atrophy, AMGA, so if you have one then you have the other.

[topher2018]

I follow the AIP diet further restricted by eliminating all foods that I have had a bad reaction to and/or that show up as producing an allergic or immune response through a blood test. I try to eat a lot of vegetables. I think the Walls approach recommends 9 cups of vegetables a day. At each meal I have a glass of water with a teaspoon or so each of apple cider vinegar and lemon juice as well as HCl pills to add acid to my stomach (after confirming through Heidelberg test that I was not producing acid in my stomach). I supplement with Vitamin D, Vitamin A, a multi-vitamin heavy on the various B vitamins, sublingual B12, omega 3 and L-Glutamine. So far it seems to have helped. I am open to other suggestions as most of this is stuff I picked up from researching on the Internet and some suggestions here (I think Clive or someone else mentioned the lemon juice with meals and it immediately made sense to me).

Obtaining B12 shots has not been an issue for me. B12 is readily available where I am. They even give shots at one of the juice bars near my house. So I have been fortunate not to have that problem (which would otherwise definitely be a major problem because it is immediately life threatening). Since presumably many other folks are also getting their B12, I have wondered why so few are discussing how to ameliorate the impacts of having a broken digestive system. Without a functioning digestive system we are destined to have a host of other issues as our body is thrown further and further out of whack. Many of the folks I have read theorize that autoimmune disorders stem from gut problems. And if we don't have acid to break down our food, it seems inevitable that we will have gut problems. So my focus is on doing things to mitigate the impact that my now malfunctioning stomach is having on the rest of the system.

[bquoss]

JennaShi, the gut problems are an everyday nuisance that, for me, can only be reduced and managed. I do what I can and then try to focus on other aspects of daily life. Lack of appetite was so serious my gp said I was becoming anorexic (in my 70's!) and I should eat what I could (ice cream!). I don't set goals for amount of daily food, tho I try to take in as many vegs and fruits as possible (3-4). A daily smoothie of milk, yogurt, and concentrated orange juice is essential - yogurt for probiotic and OJ instead of lime juice or vinegar. I keep fall-back items for bad days -- milk and crackers are always safe. As few processed foods as possible because they are chief triggers for upsets. My symptoms have been cut in half since I began taking daily celecoxib for arthritis; it seems to reduce inflammation caused by the antibodies, as well as joint inflammation. Some gastro folks get excited and want to do regular endoscopies to catch neuroendocrine tumors which are almost always benign. There is such a low level of risk that those things become serious that an old person like me can refuse to have tubes stuck down me regularly; maybe the risk assessment is different for younger people. We may hear more reports from people dealing with gastro doctors, so it's good that you've shared your experiences here. Thank you, hope you do well.

[JennaShi in reply to bquoss]

I’m glad you shared your experience as well! I’ve honestly never thought of ‘lack of appetite’ as anorexia, as I guess I think of anorexia in terms of people who desire to be skinny and don't eat because of it, but it makes sense as there are different types of situations in which people have no desire to eat. I’m glad you have a routine down and have figured out what works for you. I have to be pretty picky in what foods I select as eating things like milk and dairy products don’t work so well for me. Do you have low stomach acid as well? Do you take anything for it? Are you getting enough b12 from injections or sublingually? I’m glad the tumors they find are benign. It does seem that sometimes they get a bit excited! Sorry you have you have to go through that! It’s not something you want done all the time, like eating ice cream😉. You’re welcome, it’s nice to meet people on here who are kind and have been going through the same thing even though it’s unfortunate circumstances.

[JennaShi in reply to bquoss]

It’s a been a year since my endoscopy. Unfortunately have had to push for finding a gastro doctor, testing for antibodies and continually ask for my results. But am glad to finally get them and give copies to my new doctors. Finding its good to shed the doctors that don’t want to help you figure put what’s going on and find someone who will. Recently got a new primary and they said they treat b12 deficiency. Not sure what that means exactly but she wants to go over my results and that’s the first time a doctor has been given new information and wants to go over it so hopefully it will go well as there seems to be different reasons of thought on how to treat certain things such as b12 deficiency/ PA.

[bquoss in reply to JennaShi]

Wishing you well, sounds like you have taken charge.