Root cause of autoimmune B12 def

[mchimes]

Hello- I was just diagnosed with PA and was prescribed injections (cyanocobalamin unfortunately). This was from a hematology referral for low white blood cells. That turned out to be ok, but the doc noticed my B12 was "low" at 310. I was already supplementing B12 so she just said keep doing that. But being a meat eater and already supplementing, I asked her, is there any reason I am not absorbing B12. She said yes and ordered 3 tests. Antiparietal Cell Antobodies, IFa, and MMA. I was right at the upper limit for the antibodies and the MMA was in range, so she suggested continuing supplements and I opted for the injections since I was already doing the sublingual several times a week as normal supplementation. I am supposed to get my first shot today.

I asked her though, is there a therapy for fixing the antibody issue in the stomach and she did not know and said maybe go to a rheumatologist. I mentioned Betaine HCL and TMG to improve stomach and GI function and she didn't know what I was talking about.

Does anyone have any experience with trying to repair the antibody issue (root cause I presume) in addition to loading B12? Thanks for your replies.

[Nackapan]

It can be managed by life long b12 injections but no known cure.

I imagine like most autoimmune conditions.

I.e type 1 diabetes

[charks in reply to Nackapan]

Clinical trials are underway trying to cure type 1 diabetes by reprogramming the immune system. Maybe the research will help with other autoimmune conditions.

[Nackapan in reply to charks]

Yes have been underway for many many years.Alot of money and resources go Into research, clinical trials for diabetes.

My husband was on a trial to avoid insulin injections.

Failed ,despite the evidence at the time .

Great things have happened though for diabetes with equipment for delivering insulin without many injections a day.

One of them used for children presently.

An insulin pump ,also testing bloods sugars .. all sorts of gadgets .

Wouldn't that be great for b12 deficiency a steady flow of b12 .

[WiscGuy in reply to Nackapan]

First, research is necessary in order to determine optimal dose size and frequency for treating the various symptoms and states of B12 deficiency. Right now nothing is known in this area, which is evident by the references used to support contentions in medical journal articles regarding treatment, eg, brochures that are commonly packed with B12 ampoules, and NICE recommendations, neither of which are primary research.

[Technoid]

You would need to sort of "reset" the immune system so that it no longer recognizes intrinsic factor or parietal cells as the enemy. It seems like it would be possible in theory but no-one has figured out how to do it yet.

[Nackapan in reply to Technoid]

Yes many theories .I've read lots over 25 yesrs .

Many PHD students studying it .

There will get there in the end .

It's then applying it .

[Wwwdot]

Hi mchimes

I loved your post and it is so uplifting and I will hold that thought of a cure one day whenever I get into a low mood.

I hope they do find a cure and that it will be embraced and applied fairly and affordable to those who need it.

Happy Christmas!

🤶🤶🤶

[Cornwaller]

Suspect you'd have to knock out the entire immune system and then have a bone marrow transplant to rekindle a new system. Injections would seem a simpler work around.

[Rexz]

Hi mchimes

Unfortunately there is no cure for PA. The antibodies will reduce over time as the parietal cells (PCs) are destroyed and there's nothing left for them to attack. But that's it, once your PCs are destroyed, they will not grow back.

I see you are in the US, the AGA guidelines in the US are for those diagnosed with PA to have an upper GI endoscopy within 6 months. It's standard-of-care so ask your GI doc for that.

During this endoscopy they should biopsy your fundus and upper body so a pathologist may confirm destruction of PCs. This is the only "gold standard" to confirm a diagnosis of PA/AIG. They should also perform cancer screening, gastric mapping, and you should definitely ask them to test your stomach PH during this procedure. Some will tell you they don't do that but it can be done! PH will tell them how much stomach acid you are producing.

Since autoimmune Gastritis is not so common (about .5 to 2.0 %) in the US most GI docs will not do a proper endoscopy because they hear Gastritis and just screen for H-pylori caused Gastritis which starts in the antrum at the base of the stomach. Autoimmune Gastritis starts at the top of the stomach In the Fundus. Think of Parietal cells like a shower head, raining down hydrochloric acid and IFso our designer put them up top.

Well, that's a long winded answer to your question...can antibodies be cured?

Best wishes Rexz

[WIZARD6787 in reply to Rexz]

>>I see you are in the US, the AGA guidelines in the US are for those diagnosed with PA to have a upper GI endoscopy within 6 months. It's standard-of-care so ask your GI doc for that.

Thanks for the heads up. I was diagnosed and treated for gastritis. I checked the symptoms and had no symptoms justifying the diagnoses and discovered it is standard treatment. I stopped the standard treatment and avoided any unintentional negative consequences.

I can avoid that operation if it is not medically justified.

[mchimes in reply to Rexz]

amazing reply. Thank you. I actually just had my first colonoscopy (before I knew about the PA) and wanted a endoscopy at the same time. They said my insurance wouldn’t cover it without a reason. So, maybe I try to get that scheduled. I’ve been off ok all kinds of referrals. My GP isn’t going to know what hit her when I report back.

But I’m glad I found this community. It’s true that you need to take control of your health as all these docs are just “practicing medicine.”

Anyway, no one specifically responded regarding Betaine. It seems to me like there might be some therapeutic effect there. Betaine HCL acidifies the stomach and the Betaine itself regulates homocysteine, lots of interesting benefits outlined here:

ncbi.nlm.nih.gov/pmc/articl...

[Rexz in reply to mchimes]

Yes, after my PH was measured at 6 which indicates achlorhydria I was prescribed (OTC) Betaine HCI and digestive enzymes to take before each meal. That solved a lot of my digestion issues. Before that I could not hold food down and had lost 90 lbs. So if you Hypochlorhydria or Achlorhydria I suggest trying those. I've been taking them for three years now with great success.

You're correct, our doctors are "practicing" medicine. I'm not sure it's all their fault. They're just "practicing" what they learned in medical school. I've asked my doctors how much time they spent on nutrition or just vitamin B12. About 30 minutes of lecture. There are some good ones out there though.

Rexz

[Rexz in reply to mchimes]

Just to clarify on your reference that "betaine" is different than "betaine HCI".

I take 2g of Betaine HCL before each meal. I'll send you exactly what I take.

Hope you have a merry, and most importantly, a healthy Christmas, Rexz

[mchimes in reply to Rexz]

Yes- I bought Betaine HCL on accident before I knew I had PA. Then I learned that just Betaine is TMG and has many other benefits for energy production and muscle recovery. I have experimented the HCL on some large meals- single pill just to see. Did not notice either way.

[thyr01d in reply to Rexz]

Please, what is the difference between betaine and betaine HCI that is relevant?

[mchimes in reply to thyr01d]

thyr01d- I’m not an expert, but the HCL version is given to acidify the stomach if you are not acidic enough. HCL is hydrochloric acid. Betaine is called Trimethyl Glycine and is used to help folks with low methylation with DNA repair and bodybuilders have used it for years with muscle growth. There are lots of knowledgeable people on YouTube talking about these.

[thyr01d in reply to mchimes]

Thanks Mchimes, that is very interesting and possibly relevant to my recovery, thanks again.

[Mysteriillness in reply to mchimes]

Really interesting article. Im sure there is so much more that we dont look into to try to fix things more naturally

[Hockey_player]

Even though it is not curable, some of us (where the condition was discovered before there was too much damage) can have a completely normal life as long as we get enough B12.