B12 Issues. Many, Many Issues... - Gluten Free Guerr...

Gluten Free Guerrillas
9,441 members3,842 posts

B12 Issues. Many, Many Issues...

KWebster179
KWebster179
16 Replies

I will make this short and sweet. Im not going to list all of my problems just know that my ENTIRE life is being affected because of B12 deficiency. Everything from physical to mental and all in between! It is difficult to even live everyday life ie...having energy to clean up or cook or do anything! All of the mental health stuff kicks my butt constantly...I can go on and on and on!!

Basically, I am tired of living my life! I can't continue this way anymore! I am tired of dealing with these Dr's! My question is, does anyone know where/how I can purchase B12 injections to self treat? I know my body! And I'm not going to allow them to keep telling me that I don't know what I am talking about and that my life isn't that hard to live! Something has got to give!! And it's not going to be these da** Dr's!

**PLEASE HELP**

Thanks

bellagammons.kw.44@gmail.com

16 Replies
oldestnewest
freelancer

I'd suggest you have a look at the Health Unlocked group run by the Pernicious Anaemia Society here:

healthunlocked.com/pasoc

It's full of people who know about these things - you can't believe how much better you'll feel when you sort out your B12.

2 likes
Reply
KWebster179

ok. I will try. Thank you!

Reply
Marz

healthunlocked.com/search/b...

Here are some earlier posts/discussions.....

1 like
Reply
Ctb567

I was always borderline for b12, well really I was always under the range but it was only by 5 or 10 units so they refused to treat me even though every other test was coming back negative and I was seriously not well. In the end I greatly reduced eating everything with b12 in it about a month before a scheduled blood test just to push down into the range where they would treat it. I basically stopped drinking milk and eating diary as this is how b12 is most easily absorbed and stopped eating as much meat and my b12 levels completely tanked from 140 to 100. Its ridiculous you have to do stuff like this but thats doctors for you and I was desperate because b12 deficiency was ruining my life. I wouldn't advise this or anything if your seriously ill, I never had any nerve problems so I wasn't too worried about lowering mine. I felt better on injections, they got rid of problems I'd been having for around 10 years.

2 likes
Reply
KWebster179
KWebster179
in reply to Ctb567

Thank you sooo much!! I will definitely work on this because I am very sick and desperate at this point in my life!

Reply
Coeliacbunny

I am sorry to hear you feel so low because of the B12 deficiency.

My husband was SO low on B12 when we eventually discovered what was wrong, that the doctor said he was in danger of having a stroke. He insisted that he should have B12 injections. However, having consulted a nutritionist, we were told that it would be better to treat it with diet. Apparently, once on B12 injections, you tend to be on them for life.

My husband was advised to eat plenty of liver, so we had that almost every day for weeks. After a month, we went back to the GP and he was amazed that my husband's B12 level had started to increase, and said he'd never seen that before.

It has been a long haul, and he didn't achieve a healthy level of B12 overnight. The villi in the large intestine had shrunk away to nothing, and they needed to grow again to start absorbing nutrients. This of course takes time.

I'd advise you to eat iron-rich foods, especially liver, and to be patient. It's better to treat B12 deficiency with diet rather than injections.

2 likes
Reply
Galixie

"Apparently, once on B12 injections, you tend to be on them for life."

That is really at the discretion of the doctor who is treating the deficiency. Generally speaking, the only people who need to be on B12 injections for life are those who cannot absorb it orally. For example those with Pernicious Anemia, or those who have had surgery that removed part or all of the duodenum. Celiac can and does cause B12 malabsorption, but - in theory - once a person goes gluten free and their gut heals, they no longer need injections.

Btw, before the vitamin B12 was scientifically discovered, the only treatment for Pernicious Anemia was to eat roughly a pound of mostly raw liver every day. Eventually that treatment was advanced into being an injection of liver extract, then B12 was discovered and injections of B12 were invented which gets us to where we are today. There are also now other methods of supplementing B12 besides injections which can be effective for some people. They are skin patches, nasal sprays, and lozenges you dissolve under your tongue. The important thing is just to find a method that works. :)

2 likes
Reply
Marz
Marz
in reply to Galixie

I think it is the Terminal Ileum where the majority of B12 is metabolized. I am only aware as I do not have one - having had it removed when I had Ileo-caecal TB at 27 - then Crohns - so further surgery. Noone told me about B12 injections that would be needed for life - which resulted in spinal surgery in 2007. I am almost 70 - teaching yoga - discovered I had Hashimotos in 2005 - and am generally fit and well. I now have B12 injections weekly and as I live in Crete I can buy them over the counter without a prescription - hoooray !

Many people do well with lozenges under the tongue - combined with sprays and patches. Different things work for different people I have read.

It should not be at the discretion of the GP's as there are Guidelines which should be followed - but rarely read :-(

bcshguidelines.com/document...

Reply
Galixie
Galixie
in reply to Marz

There are multiple steps in the process of B12 absorption, and you are correct that removal of the terminal ileum would also impair absorption. I wasn't giving a full list earlier, just a couple of examples. Another example I excluded is the fact that as people age they produce less stomach acid and that also causes a decline in B12 absorption. I have found a brief explanation of the absorption process here: fao.org/docrep/004/y2809e/y...

"Absorption

The absorption of vitamin B12 in humans is complex (1, 2). Vitamin B12 in food is bound to proteins and is released from the proteins by the action of a high concentration of hydrochloric acid present in the stomach. This process results in the free form of the vitamin, which is immediately bound to a mixture of glycoproteins secreted by the stomach and salivary glands. These glycoproteins, called R-binders (or haptocorrins), protect vitamin B12 from chemical denaturation in the stomach. The stomach’s parietal cells, which secrete hydrochloric acid, also secrete a glycoprotein called intrinsic factor. Intrinsic factor binds vitamin B12 and ultimately enables its active absorption. Although the formation of the vitamin B12 - intrinsic factor complex was initially thought to happen in the stomach, it is now clear that this is not the case. At an acidic pH the affinity of the intrinsic factor for vitamin B12 is low whereas its affinity for the R-binders is high. When the contents of the stomach enter the duodenum, the R-binders become partly digested by the pancreatic proteases, which causes them to release their vitamin B12. Because the pH in the duodenum is more neutral than that in the stomach, the intrinsic factor has a high binding affinity to vitamin B12, and it quickly binds the vitamin as it is released from the R-binders. The vitamin B12-intrinsic factor complex then proceeds to the lower end of the small intestine, where it is absorbed by phagocytosis by specific ileal receptors (1, 2)."

2 likes
Reply
KWebster179
KWebster179
in reply to Galixie

WOW!!! U guys REALLY know ur stuff!!! So if my digestive system is all jacked up because of a gluten allergy I had no idea about all of these years, and I can not find/get injections, what is the best way to get the B12 in2 my system where it will help me?

BTW, thank u so much 4 the info!!

Reply
Galixie
Galixie
in reply to KWebster179

If you're unable to get injections, there are some other ways to absorb B12 that bypass the digestive system; skin patches, nasal sprays, or lozenges that dissolve under the tongue (sublingual).

1 like
Reply
Tammydog

My husband has. B12 deficiency and it does show up in a blood test. He buys a high dose B12 tablets from Holland and Barratt. This was suggested by our doctor as he wasn't low enough to be eligible for injections. He will have to take this supplement for life. But it has helped him so much. But make sure there is nothing else going on as not sure why you have a deficiency? My husband has RA and Crohns.

1 like
Reply
KWebster179

I am extremely allergic to Gluten. Most of the time I do not even eat. When I do, I swell head to toe, inside and out. Because I live in constant allergic reactions, my body does not digest or absorb right if it's trying to be absorbed through my stomach. So I need a way to take it so that my body will receive/absorb it and use it.

Reply
Marz
Marz
in reply to Tammydog

Tammydog - only 20% of the B12 result in the blood is available to be utilised in the cells where it is needed. The Range in Japan STARTS at 500 and goes up to 1300. When taking B12 supplements - it is important to also take a GOOD B complex to keep all the B's in balance.

I too have Crohns and have weekly injections. Has be been tested for VitD ?

b12deficiency.info/signs-an...

The above site will tell you need to know about B12 and other tests that may be needed. There are good films to watch - detailed on the left hand side of the page. Some B complexes contain Folic Acid which is synthetic and methyfolate is natural and often better. If B12 Deficiency is badly treated then it can become a neurological condition as you will see in the link above.

vitamindcouncil.org

In the above link you can click onto Health Conditions at the top of the page and find an article about Crohns and VitD.

Hope this helps and I am happy to answer questions....

1 like
Reply
ailsamary

I have intermittent B12 deficiency have a course of injections and am then fine for a while. I have had B12 tablets prescribed - unusual, but a kind Dr who felt it was nicer than needles. Those will be easier to find and as mentioned above where you can get them.

2 likes
Reply
tetloww

I was put on B12 injections when my levels plummeted (I lost over half my storage) in less than 3 months. It was a good dr that noticed this. I was still just in the range but she said that the sudden loss was not ok. This was 2 years ago and I still have injections every 12 weeks. This keeps my levels nice in the middle of the chart. My folate levels were the next under investigation. I would crash. Go on folic acid tabs for 4 months. 6 months later it would crash. This went on until they decided to keep me on maintenance dose. I'm currently on 2 tabs a week. My vit d crashed. Another course of tabs brought it back up. Last bloods showed it is going down again so I have bought some so I don't have to be a Guinea pig again. Ferrous levels are always low but seem to keep these up as high as I can with meat. Speak with a dr that understands. We have a few Drs that are locums and they seem to be the best. Good luck x

1 like
Reply

You may also like...