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1 Year Later, Strict Diet, Debilitating Symptoms, Only Abnormality Is Excessive B12 In Blood?

celiac b12 symptoms exhausted depression anxiety fatigue

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#16 dilettantesteph

 
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Posted 30 March 2014 - 05:28 AM

I looked at those links and there didn't seem to be any MDs involved.   That makes me supicious about validity.

 

Quote fron Ninja:

"Dr. Ben Lynch has some good information on MTHFR (his website: http://mthfr.net) Also, Dr. Amy Yasko has some really good information on methylation in general (her website: http://www.dramyyasko.com/our-unique-approach/methylation-cycle/)."

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#17 Ninja

 
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Posted 30 March 2014 - 09:40 AM

Hi dilettantesteph,

 

Totally understand your concern, however MTHFR is well studied by MD's as well. I encourage anyone who has questions about the validity of either of the Dr.'s I have mentioned to do a PubMed (or equivalent) search. I do not agree with everything they say, but have found some helpful information. I am only reporting what has worked for me. (I have been working with my MD's and monitoring B12 levels as well as a few others.) It has really made a huge difference, and while the latter is anecdotal, I figured it might also be able to help the OP. Apologies if it has caused additional confusion or harm.

 

Ninja


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Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 


#18 jebby

 
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Posted 31 March 2014 - 07:28 AM

Jebby

perhaps you are a nonmethylator?

Hi Frieze,

That's a good thought, but I had the 23 and me testing done last year and I do not have a genetic profile associated with any of the common methylation problems, such as MTHFR.

Is that what you meant? 

Jess


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#19 frieze

 
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Posted 02 April 2014 - 03:36 AM

@jebby, yes that is what I meant, the quote function seems not to be functioning......anyway, something to be checked for others.


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#20 Celeste77

 
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Posted 03 April 2014 - 06:10 PM

Holy Cow, Holy Red Bull...

 

The most bizarre thing... I’ve had a few commitments over the past handful of days. Desperate for energy and the ability to think/function, I grabbed Red Bull from the gas station. I know, terrible, but desperate.  The first one (Saturday night) was helpful but no more helpful than a cup of coffee. But then I had one yesterday, a larger one, HOLY COW! I wasn’t jittery or crazy energetic, I just felt….NORMAL. So then this morning I had a long drive in front of me so I had ½ of a small Red Bull and stopped myself… realizing that it is Red bull after all and I don’t want to push a PPM issue. I’ve also been a no packaged or processed foods girl for 3 months now, so this is a big NO for me.  BUT, for the first time in a loooooong time, I didn’t feel drowsy or spaced out, my body didn’t feel heavy, I just felt calm and normal and happy!  I even tossed some witty sarcasm at my fiancé who was thrilled to see “me” shining through.

 

For anyone who isn’t familiar, Red Bull has less caffeine that a cup of coffee but it does have B12, B6, Niacin, Panthothenic Acid, all in measurable quantities that exceed 100% of the daily recommendation. I drink about 3 cups of coffee a day (I replaced my coffee with Red Bull in these instances) so I can say with confidence, that it is not the caffeine.

 

2 weeks ago I reached out to my endocrinologist asking if he’d retest my B12 levels. I didn’t get a response. Last Thursday I reached out again and heard nothing until today and now playing phone tag with the nurse. Wouldn’t it figure? After I decided to abandon my better judgment and consume these drinks?  Does anyone know if consuming high doses of B12 alter my blood tests and if so, for how long? I’m having him check serum B12, methylmalonic acid, homocystine, folic acid.

 

I’m done with the Red Bull binge. There are other things in the drink that I don’t want in my body of course. But I could just cry thinking that I could, and likely will, go back to feeling horrible again. As always, thank you everyone for all of your comments & suggestions! I am reading them and taking all very seriously.  


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#21 GFinDC

 
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Posted 04 April 2014 - 06:57 AM

Hi Celeste,

 

Are you taking any vitamins with selenium?  Selenium affects is used in hormone production in the body.  So it is important to have enuff of it for your body hormones to be produced.  Yo can test for selenium deficit by eating a couple braziil nuts.  They have a lot of selenium in them.  You can get too much of it if you over doit, so it 's not something to take a lot of everyday.

 

Another thing you could try is ginseng.  Ginseng may help stimulate hormone production.

 

I wonder if you have tried going caffeine free?  Caffeine is disruptive to the cortisol cycle in the body.  For me it has a bad effect if I drink it for a month or so.  My body begins to react to it and I get tired and don't sleep well, but end up sleeping alot, if that makes any sense, yet still being tired.  Cortisol has a natural cycle that is supposed to taper off in the afternoon, but caffeine disrupts that cycle.

 

http://www.ncbi.nlm....les/PMC2257922/

 

IMHO caffeine isn't a problem for most healthy people.  But it seems to me it can have bad affects on people who aren't particularly well or have reactions to it for some reason.  The best way to find out if it is negatively affecting you is stop all caffeine, including coffee, tea and sodas for a month or two.  That gives your body a chance to normalize it's hormone production as best it can and stabilize.  For me after being off caffeine for a few months I can restart it and feel fine for a while.  But I always get negative symptoms after some weeks have gone by.  It kind of creeps up on ya.

 

Anyway, these are just some ideas of things you could try.  Your symptoms sound like they could be a hormone imbalance to me.  At one point I had to drink coffee or soda every couple hours to keep vertical.  It just becomes a treadmill after a while.  I hope you find your answer! :)


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#22 Caroline5757

 
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Posted 18 April 2014 - 04:31 AM

Wow, you and I have very similar symptoms Celeste! I didn't get better either with just a gluten free diet, I actually didn't get better at all and even got worse. I was so exhausted and dizzy I couldn't get out of bed most days. The only thing that helped me was doing the GAPS introduction diet for a full month. After this I have stuck to the GAPS diet but with tons of juicing and some added elements of the Gerson therapy, such as drinking castor oil. I have made SO much progress! My constant bloating is 80% gone as is my pain. My life long anemia is gone, I have more stable energy and have been able to return to a normally scheduled day, and I even exercise occasionally. I started the GAPS intro about 6 months ago and have made huge progress, theres still some symptoms I need to clear up but looking back at how sick I was its like night and day. 


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#23 dilettantesteph

 
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Posted 18 April 2014 - 06:21 AM

Look into pancreatic insufficiency. 

 

Exocrine Pancreatic Insuffiency

http://emedicine.med... ... w2aab6b2b4

"Nonpancreatic causes of EPI include the following:

Celiac disease (secondary to decreased pancreatic stimulation): This leads to EPI in about one third of patients and may be an unrecognized cause of treatment failure. "

 

The symptoms seem much the same.


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