B12

[crohnsinct]

My daughter (14) with CD started getting cold sores and I was concerned as a vegan about vitamin b12 deficiency. I had them test and they did the right test (forget which one but the one suggested here) and she way high....over 1000. So we all decided not that. Her CD is under good control and the cold sores went away quickly.

Recently she has blacked out. She has done this about 4 times (that I know of) over the past 2 years. Most occurances pre dx or while flaring. I thought maybe anemia, dehydration, malnutrition? Doc has us going to a cardiologist to rule out all t he scary stuff.

In my obsessive mommy research I read that a vit b12 deficiency could lead to fainting (something about it's connection with anemia). But her b12 is fine. Then I read that Folic acid supplementation could mask a vit b12 deficiency with a false high on blood tests. She takes 1mg of folic acid a day due to also being on methotrexate.

Do you think that is enough to mask a vit b12 deficiency? I just want to make sure if they start treating her for anemia or whatever that they are treating the right cause IYKWIM.

 

[DustyKat]

Do you mean a standard serum B12 test or was MMA tested (Methylmalonic Acid)?

Dusty. xxx

 

[crohnsinct]

They did both. Although the over 1000 number was the serum result. They said with a result that high the MMA was probably fine also.

 

[DustyKat]

Ah okay. Did you know what her Folate levels are?

 

[DustyKat]

But then again, if folate is artificially inflating the serum B12 i don't think it affects MMA (David)? So maybe the result there will give a clue as to her true B12 levels.

 

[crohnsinct]

:/ no. I don't think they have checked those since she started the Mtx...just automatic 1mg daily supplementation. Mtx is a folate antagonist so the supplementation makes sense, so I am thinking she probably isn't high and the b12 is a reliable reading...although as vegetarians it really doesn't make sense to be that high.

Further fainting research also uncovered that a folate deficiency can also be to blame. But she is supplementing.

Don't you just love it when Dr. Mom tries to figure things out?

So basically just as I suspect...I may never know the real reason.

 

[nogutsnoglory]

I have this issue with the dizziness and black outs as well. They are really scary so I'm sorry your daughter faces that. Personally after years of blood work, I think in my case it's a need for frequent replenishing of fluids and for "grazing" basically snacking throughout the day. I am not sure if these keeps my blood pressure right or keeps me hydrated but it seems to work in preventing me from feeling like collapsing. This may not be what your daughter needs but is a safe experiment to see if it helps.

 

[crohnsinct]

Hmmm interesting take on things Dusty. Will be interested to see what David has to say.

No guts...love your avatar! Yeah, that is what I was thinking and we are pushing the fluids and food as much as possible. They are not very frequent so it isn't too alarming but makes me wonder.

 

[nogutsnoglory]

If all the bloodwork checks out it might be something as simple as that. I don't get the blackouts frequently but I am often dizzy and feel like my balance is off kilter.

I don't leave the house without water and Gatorade and a bag of pretzels or salty crackers. The salt is good to replenish the sodium loss from diarrhea. I'm not sure about her dietary restrictions but there may be healthier snacks for her but as long as she doesn't go more than half an hour without som hopefully she will feel better.

 

[David]

My understanding is that folate can sometimes mask the SYMPTOMS of B12 deficiency (specifically megaloblastic anemia) but doesn't actually affect serum levels of B12 or MMA. You can read more about that here.

What was the specific methylmalonic acid level?

The, "Cold Sores". Were they on her lips or the corners of her mouth?

1000mcg of folic acid is a lot. I understand and agree with its supplementation, however, as the University of Maryland Medical Center states, "Taking any one of the B vitamins for a long period of time can result in an imbalance of other important B vitamins. For this reason, you may want to take a B complex vitamin, which includes all the B vitamins."

 

[crohnsinct]

Hmmm...well her blood results with B12 I am told are fine BUT they never gave me the MMA number. Will try to get that.

I do know that Mtx and Prevacid both will decrease her b12 BUT she did switch her diet to include eggs, added some cheese, dropped Prevacid and her multi vitamin has 6mcg of b12 and 2mg of b6 so maybe I am barking up the wrong tree. I just find all the discussion of the vitamins and minerals and such very interesting and the cause of so many things.

The whole "masking" discussion is also interesting. She is already on one med that because she has psoriasis she will return fine liver numbers even though there could still be damage. So to be sure about the liver at some point we are going to have to do a biopsy regardless of blood results.

YIKES! Her multi also has 400 mcg of folic acid so she is getting 1400mcg daily!

Cold sores: yes were on her lips in the corner.

I know fainting is not unusual BUT it is hard to accept that this is just something she will have to live with. What do you do when it comes to driving? I just would like to try to uncover the underlying cause and feel it will be something simple like drinking more water or a vitamin/mineral deficiency.

 

[David]

Did the cold sore(s) look like this?

 

[crohnsinct]

Hmmmm can't say for sure about the last time BUT she has had that kind of thing in the past. Last time more red and ugly but maybe it was just further along than the ones pictured.

 

[David]

If she had it in the past, I strongly suggest you read this wiki link a couple times, printout the references, and discuss all of this with your doctor. Especially since she is on 1400mcg of folate. My guess is she has imbalances in her other B vitamins. Angular Stomatitis (also known as Angular Cheilitis) isn't uncommon in people with Crohn's and it's an excellent hint as to what is going on.

 

[crohnsinct]

You are a genius! I am going to read it now!

 

[cmci]

Sorry to hijack this thread, but it seems kinda relevant to what I wanted to ask. Does anyone else feel like in the weeks leading up to a B12 injection they experience a lot of GI problems? I get the injections every 3 months and by the time I'm a month due I start to feel pretty bad. I'm experiencing this right now, only worse than usual. I'm tired constantly, going to the toilet more often, anxious all the time. I'm worrying that this time it might be the Crohns and not the B12 causing my issues. Anyone experience similar? Thinking about asking to get the injections every 2 months instead of every 3 to see if it helps..

 

[David]

cmci, I think you're correct to request more regular B12 injections to see if that helps. Testing your actual levels to see if you can find a correlation might be beneficial as well. And of course having your doctor determine your current disease state, if necessary, may lead to additional changes in treatment.

 

[jjk308]

The most immediate results of a B12 deficiency, under 100, are loss of mental acuity. I'm unusually sensitive to low B12 and my symptoms started at 125.

This sounds pretty serious but the cold sores are a minor problem, probably just a result of the immunosuppression.

Also I'd consider dropping the vegan diet. The higher fiber content isn't compatible with the strictures and inflammation of Crohns.