Crohn's Disease Forum » Ask the Experts » Vitamin B12 testing and Crohn's Disease

05-29-2013, 11:15 AM   #1
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Vitamin B12 testing and Crohn's Disease

I recently asked,
Do you routinely test people with Crohn's disease for vitamin B12 deficiency? Why or why not? What is the minimum B12 level you want people with Crohn's disease to have? And do you test serum B12, methylmalonic acid, or something else?
Doctor Emmanuelle D. Williams, M.D. of the Penn State Hershey Inflammatory Bowel Disease Center took time out of her busy schedule to answer this question. A little about Dr. Williams:

Emmanuelle Williams, MD is the Assistant Director for Clinical Medicine and Education, Hershey/Penn State IBD Center.

In regards to the question, Dr. Williams stated:

B12 deficiency can cause a wide variety of symptoms that can be detrimental to the quality of life of IBD patients. These symptoms include but are not limited to fatigue, irritability, depression, memory impairment, and neurologic symptoms. Beyond quality of life, it is critical to recognize and treat vitamin B12 deficiency as it is a reversible cause of bone marrow failure anemia and demyelinating disease. In our clinic, we have a low threshold to test for B12 deficiency and routinely assess vitamin B12 status in all IBD patients at risk for B12 deficiency. These patients not only include those with known risk factors for B12 deficiency such as a history of small bowel involvement, small bowel surgery, small bowel bacterial overgrowth, Ileal Pouch Anal Anastomosis, age over 65, strict vegetarians, patients who have macrocytic anemia, or anemia that is not responsive to iron but ALL patients who appear to be symptomatic.

Traditionally, the diagnosis of B12 deficiency has been made on the basis of B12 below the ‘normal’ level of 200pg/mL along with clinical findings. However in the general population this method can miss up to 50% of patients with deficiency. This is even further compounded in the IBD population, in whom clinical symptoms of B12 are missed as they are assigned to their bowel disease, and who also may have falsely normal B12 levels due to small bowel bacterial overgrowth and/or an active inflammatory state. Elevation of Methylmalonic Acid (MMA) has been found to be a more sensitive and earlier marker of B12 deficiency and can aid in the detection of B12 deficiency well before clinical signs develop. In patients who have a B12 below 400 pg/mL, as in most of our tested patients, we additionally test MMA. Folic acid is also tested as it can cause low levels of B12. MMA is then used to monitor response to treatment with a goal of normalizing MMA, reducing symptoms and at the very least reaching 200pg/mL of B12.

There are no established recommended intervals for screening. In our clinic we make sure our at risk patients are screened on a yearly basis.

There are few if any adverse consequences to over treating B12 deficiency, and we do not hesitate to initiate treatment for patients. We use 1mg of B12 subcutaneously weekly and then continue the same dosing monthly indefinitely with monitoring of treatment 3 months after treatment is initiated. We do not treat with oral replacement as this is often poorly absorbed in our patient population, and we do not use nasal formulations which are very expensive and rarely covered by insurance plans. We find that the majority of patients greatly benefit from treatment.

While B12 deficiency and treatment may not significantly change the natural course of our patients’ underlying bowel disease we feel that this can have a significant impact on our patients’ well being and we urge them to have close monitoring by their treating physician.
Thank you to Dr. Williams for her time and expertise!
06-03-2013, 08:02 AM   #2
Join Date: Dec 2012
Location: Leicester, United Kingdom
While B12 deficiency and treatment may not significantly change the natural course of our patients’ underlying bowel disease we feel that this can have a significant impact on our patients’ well being and we urge them to have close monitoring by their treating physician.
I would have to agree. The Gastroenterology clinic were initially dismissive about the impact of malabsorption and didn't perform any further tests. Over a number of years my GP practice had noted but not treated a low B12 level. I suffer fairly regular bouts of fatigue and have had a lot of time of work for this reason. On a couple of occasions this was down to a low Iron count, but often there was no explanation and I was just issued with a further sicknote. Up to this point I had never been treated for the B12 deficiency.

It was only a year ago after complaining about a particular bout of fatigue that a different doctor noted that my B12 count was at 198pg/ml (hence just below borderline). He looked back at my history and noted that over the previous 2 years this hovered at between 200 and 210.

Following an intrinsic factor test (which was fine) I was put on a course of B12 injections which I now have regularly every 3 months. He felt that there was no harm applying some preventative maintenance. As pointed out, the B12 injecions have no impact on the state of the Crohn's itself, but they certainly did have a positive impact on my fatugue levels and my ability to function mentally. I do still have bouts of fatigue, often co-inciding with the end of the 3 month period but overall my fatigue levels are not as severe.

More recently, a bout of fatugue turned out to be due to low/borderline Iron count and vitamin D count. I was put on a course of iron tabs and vit D tabs and it took a couple of weeks to kick in, but I'm now a lot better.

In my case it would appear that B12 is only one of the possible deficiencies cause by Crohn's and given that these are so easily treatable, I see no reason why a GP should not run tests and prescribe the appropriate treatment. Unfortunately I have had to persist sometimes until someone was willing to dig a little deeper and not just dismiss the problem with the words 'Well you do have a chronic condition...'.
06-03-2013, 08:20 AM   #3
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Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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or anemia that is not responsive to iron

My daughter fits into this group, she had low normal b12 with low iron levels and anemia. The anemia started to improve quickly once we started supplement with b12.
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
06-03-2013, 11:15 AM   #4
Join Date: Apr 2013
Hi CronoMush,
I think I've also suffered from bouts of fatigue recently. Difficult to say if it's due to the crohn's activity or also some vitamin deficiencies. My b12 levels are normal(due to regular injections) but my iron levels are borderline(serum ferritin at 29) and vitamin d at 56(apparently insufficient). Do you know what your levels are? My gastro doctor recommended that I avoid iron supplements but I think that could be a reason for my fatigue.
06-04-2013, 08:27 AM   #5
Join Date: Dec 2012
Location: Leicester, United Kingdom
I don't know what my levels actually are. The letter from the clinic at the hospital to my GP (at my request) regarding the results said the indicators for both vit D and Iron levels were low but the results were otherwise unremarkable.

My guess is that they were borderline or just slightly below normal. I'm due to have a B12 jab next week so I will see if the nurse can give me the actual figures from my previous blood test.

My B12 level I believe is now normal due to regular injections too, but its curious to see other items getting low from time to time. The trouble is its really impossible to predict what might go low next and when. Likewise I don't think one can just take the supplements on an ongoing basis as preventative maintenance. In my case, 3 years ago I got Sarcoidosis which cause vit D and Calcium to go very high. It would have been made things much worse if I had been taking a vit D supplement at the time as well....
06-04-2013, 09:55 AM   #6
Join Date: Apr 2013
I agree. I personally take a daily multivitamin capsule just to try and have some sort of minimal insurance. I think it's also important to supplement in calcium as if we are not getting enough(I personally avoid most dairy products) we might get osteoporosis in the future. This is even more likely for those who have been on steroids for long periods. Recently my serum folate was low so I was give folic acid tablets (although I heard a better indicator for total folic acid levels in the body is RBC folate). I think it's important to try and ensure regular testing of key nutrients and vitamins, so that deficiencies don't last too long. What dose of vitamin d are you taking?
06-05-2013, 06:42 AM   #7
Join Date: Dec 2012
Location: Leicester, United Kingdom
Currently 1000iu.
02-07-2014, 11:56 AM   #8
Join Date: Feb 2014
My wife has had crohn's for 15 years and begin B12 supplements about 5 years ago. For a while she was taking it by nasal inhaler, but has shifted to injections (primarily due to cost).
07-23-2014, 02:43 PM   #9
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I wonder! I get vitaminB12 shot for 4 years scene my bypass. and my crohns dr. never mention anything about it. If it was good or bad!!!!!
09-05-2014, 08:52 AM   #10
Join Date: Aug 2014
Location: Ontario

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I was just told by doctor after blood results that I was deficient in b12 and my levels were 113 ... I'm a 27 yo female 5'9 and 120 pounds... I'm not sure how deficient this level makes me and whether it's cause for concern...she mentioned possible b12 injections...
09-05-2014, 10:44 AM   #11
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
It is a cause for concern and injections and regular monitoring to determine the optimal time between injections for you is also a good idea.

Kudos to your doctor for testing for this.
09-05-2014, 12:50 PM   #12
Senior Member
Join Date: Apr 2013
The long term effects of b12 being left too low can be devastating, painful and permanent. I really applaud you David for the questions, input and emphasis put on how serious this can become left untreated.

BTW I have permanent nerve damage from being (what we feel to be) left too low for far too long. My gi and i went around and around about testing since i had not had surgery yet. But had symptoms of in your face low b12. Finally my other dr. checked and panicked, having me come back the same day for 1st injection. I have irreversible nerve damage and am in pain 24 hours a day. Fingers crossed they will find a treatment for the damage one day. Also at times my words slur, my memory i feel was affected, and my energy was where i could not stand for very long, etc.

A misconception can be: you must have missing small intestine, ileum surgery, etc. to be low ~ not true! If the surface can not absorb properly then b12 can be low. So get checked and get checked regular.

Thank you
01-17-2015, 08:18 AM   #13
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Join Date: Apr 2012
After a bowel resection 28 years ago I got pernicious anemia, B-12 deficiency which cause a significant mental dulling. My gastroenterologist realized I'd be at risk for it, but his regular blood tests for B-12 always put my levels above those considered dangerous.

Obviously some of us need more B-12 than normal. Supplements didn't work but injections quickly got me back to normal and I've continued them monthly ever since then.

I found the worst problem with B-12 deficiency is that you lose the capacity to analyze what is happening to you. Luckily my wife insisted I see my gastroenterologist and get treatment.
01-20-2015, 05:39 PM   #14
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
That's interesting you weren't able to analyze what was happening to you jjk. I'm glad your wife was able to see it though! I never thought about it from the perspective you speak of though. Thank you for enlightening me!
01-21-2015, 05:45 AM   #15
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I guess it's like dementia: you don't know that it's happening to you. There's a lot of theories about B12 deficiency causing dementia, and in fact dementia often being a misdiagnosed B12 deficiency, which is tragic as it's so easy to fix.

20 odd years ago I was told I had low B12 after I was getting a weird sensation of numbness down one side, but the doctor didn't think it was important. That was about the time I started getting stomach issues (told it was IBS). Knowing what I know now I think I've had Crohns all along and probably a B12 deficiency for 20 years.

Not sure what damage it might have done; nothing too bad ever happened, but I now think the reason I've had bouts of depression over the decades is down to B12. I certainly haven't felt like that at all since I started with the supplements and now injections.
Diagnosed May 2014
20cm Terminal Ileum and Ileocaecal resection July 2014
125mg Azathioprine
03-18-2015, 04:23 PM   #16
Join Date: Oct 2011
Location: Boise, Idaho
I'd like to know more about B-12 deficiency and recovery. My GI just informed me my level is a very low 127 (anything <200 is considered low), and that I'll have to start taking injections. I had a resection in 1995, where they took 12" of my small intestine and 6" of the large.

Might this explain my having a hard time lately finding the word I'm looking for? Or my insomnia? What symptoms have others had?

I'm also hoping hoping hoping that IF there is neurological damage, that it's reversible...? How long will that take?

Also here is a banana with legs and a cape.
03-18-2015, 06:40 PM   #17
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
If you're having to use, "IF" when referring to neurological damage, then I can just about guarantee any you do have is reversible.
06-06-2015, 01:44 PM   #18
Join Date: Jun 2015
Location: Paks, Hungary
It was an interesting post. Thank you!
06-06-2015, 03:20 PM   #19
D Bergy
Senior Member
Join Date: Apr 2007
I am trying a sublingual B-12 product. Hopefully it will work well enough to get away from injections.

We will see how my next test comes out.

06-06-2015, 10:36 PM   #20
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Join Date: Feb 2012
Location: Austin, Texas

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My Vit D was really low, my VitB (B12?) Is on the low side of normal. I have a spot on my foot/toe that feels a bit numb.

My Dr is ok with the low side of normal, but with all the nutritional trouble we have would it hurt to treat us until we make the high side of normal? Would I not feel better?

What's the best Dr to see for this- other than my GP or GO?

Thank you,


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!

Currently on Humira 80 painful milligrams every other week.


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