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02-20-2012, 10:37 AM   #1
nwood10
 
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Question about Vit B-12

I'm new to this forum and also to Crohn's. I have read a lot of posts about how people with Crohn's need to get Vot B-12 injections. I was just wondering how you if you need to? I know you have to get blood work and get your B-12 levels tested, but I was wondering if there are any symptoms of B-12 deficiency that are common that I can look for without getting my levels checked?
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Crohn's Disease-Diagnosed 1/26/2012
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02-20-2012, 11:02 AM   #2
toml99
 
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Yes, there are symptoms. You can do a quick Google search and find a number of articles on this, but one of the more common symptoms is anemia. B12 is absorbed in a part of the small intestine that is most often attacked by Crohn's which leaves scar tissue, which inhibits the absorption of B12. This can lead to anemia, fatigue, depression, etc. Probably the most noticeable symptom to you would be fatigue.
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02-20-2012, 11:43 AM   #3
Trysha
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I agere with tom, well put---another sign can be a sore tongue,sometimes described as a strawberry tongue because of its bright red colour.
Hugs and best wishes
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02-20-2012, 11:54 AM   #4
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Would you recommend Vit B-12 tablets before trying the injection? I seem to have more fatigue than anything. I have a follow up on March 8th, so I can ask them. Just thought I would get some input from people who actually have it.

Thanks!
02-20-2012, 12:13 PM   #5
sawdust
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I would mention your fatigue to your doc and see if you can get a blood test to see what your B12 levels are (have him look at your D and iron while you're at it). I wouldn't supplement anything without discussing it with your doctor. I try not to guess with these things. Perhaps you could call your doctor and he might agree to have you get blood drawn before your appointment, so you can review the results together on March 8? That might help it be quicker results for you.
02-20-2012, 12:34 PM   #6
toml99
 
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I agree with sawdust -- it's important to get a baseline reading of your B12 level, in part to eliminate it as a problem if your fatigue is coming from something else. You really want to get a snapshot of what's going on with you today. Then, if your B12 level is low, you can start with B12 supplements or injections.
02-20-2012, 01:31 PM   #7
DustyKat
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Stores of B12 can last a number of years so if you have terminal ileum disease or have had that area of bowel resected keeping a check on your levels is something you will need to be vigilant about. In view of the fact that a simple blood test will pick a deficiency then, if you have ileal involvement, I would be having a test done every six months rather than waiting for symptoms to appear.

The type of anaemia that occurs due to a B12 deficiency is called pernicious anaemia and aside from fatigue it's most common symptoms are neurological and anaemic, including...numbness, tingling, weakness, lack of coordination, clumsiness, impaired memory and personality changes, shortness of breath, pallor, dizziness, fatigue and heart issues. Some people may exhibit many of these symptoms and some very few.

Pernicuous anaemia is life threatening which is why it would be better to monitor your levels via blood tests rather than waiting for symptoms to develop that can be unreliable in nature and/or mimic other conditions and vary greatly from person to person.

This thread may be of interest to you...

http://www.crohnsforum.com/showthrea...icious+anaemia

Dusty. xxx
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02-22-2012, 12:40 PM   #8
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I was b-12 defecient for quite a long time and thankfully between taking the oral b-12 tablets and getting the crohns under control all seems to be back to normal. Levels are still quite low but above the low level trigger point. Get the bloods checked every 6 months (ish) as to me if caught early enough would be a good indicator that inflamation is starting again.

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02-22-2012, 12:52 PM   #9
David
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We have a nice wiki article on vitamin B12 as well. As Dusty mentioned, many will call a B12 deficiency Pernicous Anemia. However, that is NOT the iron deficiency anemia so many think of when they hear "anemia".

I (and many others) feel very strongly that you should aim for a serum level of 500+. You can have "normal" levels of B12 but be on the lower end and still have elevated levels of homocysteine and methylmalonic acid and therefore still be deficient. As most doctors only test serum B12 which isn't the most accurate test in the world, you want to get that level nice and high. If you're on the low-normal range, discuss upping your dose with your doctor or trying a difference means of supplementation.

And as always, according to the University of Maryland Medical Center, taking just one of the B vitamins is a bad idea. Take a complex B along with your B12 so that imbalances do not occur.
03-01-2012, 02:21 PM   #10
chubbytony
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i'm in the uk had crohn's for 6 yrs now with an illestomy i have my blood test's every 3 months they always give me b12 jab's at the same time it does sting a bit as they put it in my arm muscle but other than that it's not to bad. they also do a full blood count at the same time.i must admit that after the b12 it does make you feel a bit better weather it's just the fact you know it's just been done or not i don't know hope this helps a bit.....
03-06-2012, 11:37 PM   #11
wolfem
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I can relate to the neuro signs--pins and needles, numbness, personality changes, etc, etc, etc. And, you can even develop brown spots on skin. I've had them all. I give myself shots daily now. Anyhow, best to keep up with testing and keep symptoms in check. I think it can take months or even years to completely get over it... I hope I do at some point.
03-06-2012, 11:39 PM   #12
David
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Daily shots of B12? What dosage? Did your doctor tell you to do them daily?
03-06-2012, 11:47 PM   #13
wolfem
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Daily shots of B12? What dosage? Did your doctor tell you to do them daily?
Yeah. He wanted me to do 3,000mcg three times a week but then I asked if I could just do 1,000 daily because my symptoms are awful. I can't hardly move unless I get a shot--it even hurts to breathe. Anyhow, I hope its safe. Well I find the biggest relief with thiamine. Do you know if its o.k. to take 200mg of thiamine orally? I keep trying to contact my doctor about it. I'm trying to get all b vitamins sublingual or in a shot. I can't take B6 because I tested toxic levels about a year ago. However, I was borderline thiamine, B12 and folic acid deficient at the same time.
03-06-2012, 11:52 PM   #14
David
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Toxic levels of B6? It's water soluble, how did you manage that? Were you taking massive supplemental doses of it as in 200mg+ per day?

200mg of Thiamine is pretty high but it really depends on if you're absorbing or not. The University of Maryland says 50-100mg is usually safe. From the Linus Pauling institute at Oregon State:
The Food and Nutrition Board did not set a tolerable upper level (UL) of intake for thiamin because there are no well-established toxic effects from the consumption of excess thiamin in food or through long-term oral supplementation (up to 200 mg/day). A small number of life threatening anaphylactic reactions have been observed with large intravenous doses of thiamin.
Also, the University of Maryland Medical Center recommends that if you take one B vitamin you should take them all to avoid imbalances.

Are you monitoring your actual B12 levels as you do this? What have you tested at?
03-06-2012, 11:58 PM   #15
wolfem
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Toxic levels of B6? It's water soluble, how did you manage that? Were you taking massive supplemental doses of it as in 200mg+ per day?

As to your other questions, the University of Maryland Medical Center recommends that if you take one B vitamin you should take them all to avoid imbalances.
I have no idea but I had this awful sharp pains in my muscles. I thought it was the pentasa I was on. I was taking a chewable multivitamin at the time but I'm sure it didn't have that much. However, I was eating tons of meat. My levels were 115. My naturopathic doctor didn't say anything about the value. Except when I mentioned it again recently, he decided I should avoid B6 and add all other Bs.

Well, as for the B12 I just got tested today from another doctor (gastro)--
I asked him to. I just started the B12 injections 6 days ago and my naturopathic doctor wants to test my B vitamins in 3 weeks. Ugh. I just don't know what to do anymore. My gastro doc doesn't think I'm deficient but my NMD says I am.

Thanks for the website. I really appreciate it.

Last edited by wolfem; 03-07-2012 at 12:13 AM.
03-07-2012, 12:44 AM   #16
David
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It looks like I edited my post while you were replying, please be sure to check my post again.

115 ng/ml?

What is your B12 level? If you REALLY want to get to the root of your B12 dilemma ask your NMD to test your homocysteine and methylmalonic acid levels. I'd hope they'd understand why.
03-07-2012, 12:14 PM   #17
wolfem
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It looks like I edited my post while you were replying, please be sure to check my post again.

115 ng/ml?

What is your B12 level? If you REALLY want to get to the root of your B12 dilemma ask your NMD to test your homocysteine and methylmalonic acid levels. I'd hope they'd understand why.

OK. So he recently tested me two months ago but I never received the values (sorry if I don't make sense--my brain isn't functioning that well). He tests for methylmalonic acid and homocysteine and just told me I'm becoming anemic again. A year ago my tests were as follows (before B12 injections): B12 890, B6 115 (ng/mL), B1 15 (nmol/L), folate 16, homocysteine 8.2, methylmalonic acid 307. These were drawn around the time that I started coming down with a few symptoms.

Anyhow, he has been going off of MCV which indicates the relative size of blood cells right? Anyhow, its an indicator for anemia (although most doctors look past it if hemoglobin is normal). My MCV is almost always elevated along with hematocrit.

I gave myself a shot yesterday and today. My esophagus isn't nearly in as much pain. I just got off of the phone with my NMD and he is going to test me for pernicious anemia. He wants to wait two weeks just to see where my levels are at with all the B vitamins.

I have chronic gastritis and like I said before my gastroenterologist says that its not crohn's. I've also beent tested for H. pylor multiple times. Neg. Anyhow, that is why my NMD is interested in testing my for the pernicious anemia. Another thing I notice is that when I get shots, my stools become more normal (sorry for all the details).

Thanks for all your support. The stuff I've been dealing with has been driving me nuts (no pun intended). It only recently started to become a whole lot worse.
03-07-2012, 01:18 PM   #18
bjeffrey
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If my B-12 levels fall below 500, i feel it.

I self inject every two weeks, sometimes weekly depending upon my activity level or lack thereof.

Typically, western medicine does not treat B-12 deficiency until its below 200. Asian and Europeans in research treat anyone under 500.

Perhaps, this snippet may help too.
A person with Crohn’s disease might consume more sugar than the average healthy person.1 A high-fiber, low-sugar diet led to a 79% reduction in hospitalizations compared with no dietary change in one group of people with Crohn’s disease.2 Another trial compared the effects of high- and low-sugar diets in people with Crohn’s disease.3 People with a more active disease were reported to fare better on the low-sugar diet than those eating more sugar. Several people on the high-sugar diet had to stop eating sugar because their disease grew worse. While details of how sugar injures the intestine are still being uncovered, doctors often suggest eliminating all sugar (including soft drinks and processed foods with added sugar) from the diets of those with Crohn’s disease.
A diet high in animal protein and fat (from foods other than fish) has been linked to Crohn’s disease in preliminary research.4 As with many other health conditions, it may be beneficial to eat less meat and dairy fat and more fruits and vegetables.
Some people with Crohn’s disease have food allergies and have been reported to do better when they avoid foods to which they are allergic. One study found that people with Crohn’s disease are most likely to react to cereals, dairy, and yeast.5 Increasingly, baker’s yeast (found in bread and other bakery goods) has been implicated as a possible trigger for Crohn’s disease.6 Yeast and some cheeses are high in histamine, which is involved in an allergenic response. People with Crohn’s disease lack the ability to break down histamine at a normal rate,7 so the link between yeast and dairy consumption and Crohn’s disease occurrence may not be coincidental. However, the allergy theory cannot account for all, or even most, cases of Crohn’s disease.
Elemental diets contain amino acids (rather than whole proteins, which can stimulate allergic reactions) and are therefore considered hypoallergenic. They have been used extensively as primary therapy in people with Crohn’s disease,8 9 10 with remission rates comparable to those of steroid drugs. Nevertheless, diets containing intact proteins derived from dairy and wheat have proven equally effective at controlling the symptoms of Crohn’s disease.11 12 13 Until more is known, it is premature to conclude that food allergy plays a significant role in the development of Crohn’s disease or that a hypoallergenic diet is any more likely to help than a diet whose protein is only partially broken down.
In one trial, people with Crohn’s disease were asked which foods aggravated their symptoms.14 Those without ileostomies found nuts, raw fruit, and tomatoes to be most problematic, though responses varied from person to person, and other reports have displayed different lists.15 (Ileostomies are surgical passages through the wall of the abdomen into the intestine that allow the intestinal contents to bypass the rectum and drain into a bag worn on the abdomen.) People with Crohn’s disease wishing to identify and avoid potential allergens should consult a doctor.
There is preliminary evidence that people who eat fast foods at least two times per week more than triple their risk of developing Crohn’s disease.16

Vitamin Dmalabsorption is common in Crohn’s18 and can lead to a deficiency of the vitamin.19 Successful treatment with vitamin D for osteomalacia (bone brittleness caused by vitamin D deficiency) triggered by Crohn’s disease has been reported.20 Another study found 1,000 IU per day of vitamin D prevented bone loss in people with Crohn’s, while an unsupplemented group experienced significant bone loss.21 A doctor should evaluate vitamin D status and suggest the right level of vitamin D supplements.
Inflammation within the gut occurs in people suffering from Crohn’s disease. EPA and DHA, the omega-3 fatty acids found in fish oil, have anti-inflammatory activity. A two-year trial compared the effects of having people with Crohn’s disease eat 3.5 to 7 ounces of fish high in EPA and DHA per day or having them eat a diet low in fish.22 In that trial, the fish-eating group had a 20% relapse rate compared with 58% among those not eating fish. Salmon, herring, mackerel, albacore tuna, and sardines are all high in EPA and DHA.
In a double-blind trial, people with Crohn’s disease who took supplements providing 2.7 g of EPA/DHA per day had a recurrence rate of 26% after one year, compared to a 59% recurrence rate among those taking placebo. 23 Participants in this study used a special enteric-coated, “free-fatty-acid” form of EPA/DHA taken from fish oil. Other blinded trials using other fish oil supplements that were neither enteric-coated nor in the free-fatty-acid form have reported no clinical improvement.24 25 These disparate outcomes suggest that the enteric-coated, free-fatty-acid form may have important advantages, including the reported elimination of gastrointestinal symptoms that often result from taking regular fish oil supplements.26 Unfortunately, enteric-coated “free-fatty-acid” fish oil is not commercially available at this time.
In double-blind research, diarrhea caused by Crohn’s disease has partially responded to supplementation with the beneficial bacterium Saccharomyces boulardii.27 Although the amount used in this trial, 250 mg taken three times per day, was helpful, as much as 500 mg taken four times per day has been administered in research successfully using Saccharomyces boulardii as a supplement with people suffering from other forms of diarrhea.28
Crohn’s disease often leads to malabsorption. As a result, deficiencies of many nutrients are common. For this reason, it makes sense for people with Crohn’s disease to take a high potency multivitamin-mineral supplement. In particular, deficiencies in zinc, folic acid, vitamin B12, vitamin D, and iron have been reported.29 30 31 Zinc, folic acid, and vitamin B12 are all needed to repair intestinal cells damaged by Crohn’s disease. Some doctors recommend 25 to 50 mg of zinc (balanced with 2 to 4 mg of copper), 800 mcg of folic acid, and 800 mcg of vitamin B12. Iron status should be evaluated by a doctor before considering supplementation.
Vitamin A is needed for the growth and repair of cells that line both the small and large intestine.32 At least two case reports describe people with Crohn’s disease who have responded to vitamin A supplementation.33 34 However, in one trial, vitamin A supplementation failed to maintain remission of the disease.35 Therefore, although some doctors recommend 50,000 IU per day for adults with Crohn’s disease, this approach remains unproven. An amount this high should never be taken without qualified guidance, nor should it be given to a woman who is or could become pregnant.
People with Crohn’s disease may be deficient in pancreatic enzymes, including lipase.36 In theory, supplementing with enzymes might improve the nutrient malabsorption that is often associated with Crohn’s disease. However, people with Crohn’s disease considering supplementation with enzymes should consult a doctor.
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Vit D 50000 IU once a week
Vit B-12 1mg self inject every two weeks
Diphenoxylate/Atropine 2 tabs up to 4x a day
Medicinal Marijuana

Surgeries:
Ileal-right colostomy and reverse colostomy with takedown of Ileovesicula fistula to the bladder 3/2003

Resection of small bowel and colon ileotranverse colostomy. drainage of large psoas retroperitoneal abscess 11/2004

Perirectal ishiorectal abscess with fistula 5/2005
03-07-2012, 09:57 PM   #19
David
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Hey bjeffry, where'd you get that information? I'd like to use them as a source if it's a good one. Thanks
03-08-2012, 02:20 AM   #20
DustyKat
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I have seen that article before David. I have this source in my reading list...

http://www.mothernature.com/library/...cfm/id/1198000

Dusty.
03-08-2012, 03:11 PM   #21
Ang
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Slightly off the topic ... I was on a 10 week course of vit b12 complex due to stress ... And I noticed that my appetite always increased for a day or two just after the shot. When I queried this with the nurse she also commented that a lot of people felt they had an increase in appetite after the shot. We started taking hubby for the shots, and it did seem to help with his appetite.
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