CELIAC Archives

Celiac/Coeliac Wheat/Gluten-Free List

CELIAC@LISTSERV.ICORS.ORG

Options: Use Forum View

Use Monospaced Font
Show Text Part by Default
Show All Mail Headers

Message: [<< First] [< Prev] [Next >] [Last >>]
Topic: [<< First] [< Prev] [Next >] [Last >>]
Author: [<< First] [< Prev] [Next >] [Last >>]

Print Reply
Subject:
From:
Charlotte Ward-Perkins <[log in to unmask]>
Reply To:
Charlotte Ward-Perkins <[log in to unmask]>
Date:
Mon, 26 Jun 2006 17:00:31 +0100
Content-Type:
text/plain
Parts/Attachments:
text/plain (67 lines)
<<Disclaimer: Verify this information before applying it to your situation.>>

BTW on the strength of the evidence I was able to give her my mother is now on injections every fortnight so thanks again.

Charlotte, Oxford, UK



Here is an article about B12 that may help. http://www.aafp.org/afp/20030301/979.html

"In one study,18 38 patients with vitamin B12 deficiency were randomized to receive oral or parenteral therapy. Patients in the parenteral therapy group received 1,000 mcg of vitamin B12 intramuscularly on days 1, 3, 7, 10, 14, 21, 30, 60, and 90, while those in the oral treatment group received 2,000 mcg daily for 120 days. At the end of 120 days, patients who received oral therapy had significantly higher serum vitamin B12 levels and lower methylmalonic acid levels than those in the parenteral therapy group. The actual transport mechanism used in this pathway remains unproved, but vitamin B12 is thought to be absorbed "en masse" in high doses. Surprisingly, one study20 showed that even in patients who had undergone gastrectomy, vitamin B12 deficiency could be easily reversed with oral supplementation. 

Intramuscular injections, although safe and inexpensive, have several drawbacks. Injections are painful, medical personnel giving the injections are placed at risk of needlestick injuries, and administration of intramuscular injections often adds to the cost of therapy. Treatment schedules for intramuscular administration vary widely but usually consist of initial loading doses followed by monthly maintenance injections. One regimen consists of daily injections of 1,000 mcg for one to two weeks, then a maintenance dose of 1,000 mcg every one to three months."

If you are interested in more info on B12 take a look at this thread that is part of  the Gluten Sensitivity/Celiac Disease forum of Braintalk Communities http://brain.hastypastry.net/forums/showthread.php?t=3742

If her B12 was very low, she may need more than one injection per month.

 Could your mother tolerate oral B12? I started on injections after being diagnosed as celiac and 

severely B12 deficient, and we quickly discovered that I could not even go 2 weeks without suffering symptoms of deficiency.  However, on a daily oral dose, I do fine.  I actually found several studies the web at the time showing that  the majority of patients do do as well with the oral as with the 

injections. I didn't bookmark them, but I believe they were done by Health BC (British Columbia) as a cost vs. benefit study.*

[*NB Oral vitamin B12 therapy in the primary care setting: a qualitative and quantitative study of patient perspectives BMC Family Practice 2005 http://www.biomedcentral.com/1471-2296/6/8

Jeff C Kwong1 et al,Department of Family and Community Medicine, University of Toronto]

I get buffered C + b12 + glutathione weekly. It has made me feel amazingly close to the "good" I experienced 6 or so years ago. Before I moved to the iv I did injections three times a week, but found that it wasn't making a big enough impact. I think the question you should be asking is how much is too much. Data is available by searching pubmed. Best of luck feeling better - its meant a world of difference for me! 

 Since 2002 I have given myself injections of B12 1cc and folic acid ½ cc per week.  Additionally I used to do ½ cc of B-complex but dropped that a few months ago.  This was all recommended to me by Dr. Jonathan Wright of the Tahoma Clinic in Renton, WA. USA. mostly for my achlorhydria but it is possible he would have suggested the same thing if I had just been going to him for cd.  Dr. W says that you could bath in B12 and it wouldn't harm a person.  Recently my ND was assessing a need for more folic acid for me.  I think I did an extra injection that week but am back to normal.  You might be able to query the clinic at [log in to unmask] about some backup med info.

 I don't have any literature to cite, but I was feeling the same way as your mother - after 2 weeks, I was going downhill. So I started taking sublingual B-12 liquid throughout the month and that helped A LOT.

 I was diagnosed with vitamin B12 deficiency anemia (also called pernicious anemia) 5 years ago.  When I started B12 shots my doctor told me to do them as often as I felt the need.  I did my own shots at home.  The shots made a tremendous difference in my energy level, mood, mental clarity & overall sense of well being.  I did about 2 or 3 injections a week for a month or more then cut back to once a week.  Eventually I cut back to once a month which if fine for me now.  I think I probably did weekly injections for at least a year.  I could always tell when I needed another one because I'd begin to feel very tired.  I always got a big boost from those shots during that first year.  When I no longer got a big boost from them, I knew it was time to cut back to maintainance dose once a month.

I'm an RN and I've worked for ignorant physicians who only allow their patients one injection a month.  I personally think it's cruel because it takes so long to recover at that rate.  If you have one of these doctors, there's probably not much you can do to change their minds if they are really stubborn (and ignorant).  But you can buy vitamin B12 supplements at any pharmacy or health food store & pop them like candy several times a day.  There are some very good & fast acting under-the-tongue ones made by TwinLab.  I think they are called "B12 dots."  I've used them & know they are GF.  The only thing you must be careful about is to make sure you get plenty of potassium because the red blood cell replacement is so rapid it uses tons of potassium which can cause a potassium deficiency in the blood serum.  To counter this, just eat a few extra servings of high potassium fruits (bananas, oranges, grapes, grapefruit, etc.) a day.

It's important for you to understand that vitamin B12 is stored in the liver.  Once absorption of B12 ceases in the gut it takes about 3 to 5 years to deplete liver stores.  So replacement of B12 should be at very high doses to supply not only your daily needs, but to replinish the stores of B12 in the liver.  This will take time.  The higher & more frequent the dose, the faster recovery will be.

Below is a quote directly from LANGE 2002 Current Medical Diagnosis & Treatment page 524.  Lange is an authoritative textbook used in many medical offices & schools.  [My comments in brackets.]

"Treatment

"Patients with pernicious anemia are often treated with parenteral therapy [this means other than by mouth].  Intramuscular injections of 100 ug of vitamin B12 are adequate for each dose.  Replacement is usually given daily for the first week, weekly for the first month, and then monthly for life.  

It is a lifelong disorder, and if patients discontinue their monthly therapy the vitamin deficiency will recur.  Oral cobalamin [vitamin B12] may be used instead of parenteral therapy in a dose of 1000 ug per day and must be continued indefinitely.

"Patients respond to therapy with an immediate improvement in their sense of well-being.  Hypokalemia [potassium deficiency] may complicate the first several days of therapy, particularly if the anemia is severe.  A brisk reticulocytosis occurs in 5-7 days, and the hematologic picture mormalizes 

in 2 months.  Central nervous system symptoms and signs are reversible if they are of relatively short duration (less than 6 months) but become permanent if treatment is not initiated promptly."  [In other words, the sooner & quicker you get your blood levels of B12  up, the better off you'll be.]

 I'm taking B12 shots for lyme disease and I am able to take them daily. I started out daily then m,w,f. I wasn't feeling as well on the off days so she said I could take them daily if I want to. I usually do 5 shots in a week.

 Yes yes yes, back when drs thought B12 shots were great stuff, back before patented drugs proved more popular, drs would start out with shots as close together as every day and back off to whatever interval the pt was most comfortable with.  I worked for an old man in 1980 who took two shots a week.

A friend's mother was going downhill rapidly with "Alzheimers" so I said go along with her and say to the dr, "I want my mother on a trial of B12 shots".  The dr looked confused and said she didn't know what that was, it must be something that specialists did.  Every nurse I have told this too has rolled her eyes at this dr's ignorance.  The dr did give a prescription for 12 shots, 1 a month as in your mom's case.  I asked if there was any way she could get more, as her sister was willing to give the shots.  They went

to the nurse behind the dr's back and got more, to do a proper trial.  After 3 weeks of shots, they could hardly believe the improvement!     My dr considers "A trial of B12" to be a shot a day for 3 weeks, then backing off for another couple of weeks till 30 shots have been given. 

Another friend went to his wife's dr, who's refused for years to give the guy's wife shots, and the dr tested him and said his B12 was fine.  I said yeah, I'd just read that the same levels on the test that will get you shots in Japan won't get them here.  So he went to MY dr and got the prescription, his wife gave him the shots and it took 2 weeks for him to feel better.  He said that not only had he had numbness and tingly feet, but if he did anything at all, he just wanted to go and lie down.  He's been better since, takes the tablets now but they don't work as well. 

Best bets to get more shots are to call and talk to her nurse, if that fails, go to a DO or a nurse  practitioner in a little clinic or call your health food store and ask for advice on finding a holistic minded dr.  Save yourself a lot of time and trouble by talking to their nurses first if possible.  Don't let the docs intimidate you, they don't seem to understand that you employ them and not the other way around.

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC

ATOM RSS1 RSS2