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Guest Kathy Ann

Recovery From Neurological Problems

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My thyroid values are ok now (not sure what they are) so i don't think it's that. Vits - I only really take cal/mag/zinc. I am concerned about the B vits, but apparently my B12 level is considered normal (387), despite what I've read here that suggests that's on the low side. If the GP thinks its 'normal' I'm not sure what to do. I can take B tabs, but when I do that, it turns my wee yellow, which I thought meant my body didn't need that much??? I'd like to give B12 shots a go, but not sure I'll be able to convince the GP its necessary (funding issues are rather different here in the UK so that has an impact...)

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The normal range for B-12 is something like 300-800, however, my hematologist told me that she sees symptoms of B-12 deficiency when serum B-12 is in the 300s. I have peripheral neuropathy (tingling, surging, numbness) in my feet and legs. When I have had gluten, occasionally, my entire body will appear to surge with irritation, like each nerve is inflammed. I also have irritability, anxiety and depression following accidental gluten exposure. Right after celiac diagnosis my B-12 was in the 300s. I received a few B-12 injections. Following each injection, signs of neruopathy stopped, and my mood improved. I think everyone gets mood improvement with large doeses of B-12. My B-12 levels rose to the 700s. After a few months with no injections, the neruopathy returned. It may also have be correlated with stress. At this point, I got intranasal B-12 from my MD, and I take this once weekly (nascobal nasal spray, 500mcg Cyanobalamin). I also added a daily Vit B-12 supplement (1000mcg) on top of my multivitamin (100mcg B-12). The neuropathy has disappeared, at least for now. I have been gluten free for just over 1 year. Keep in mind that while vit B-12 is obviously important for neurological health, so are other nutrients such as folate, Vit E and fatty acids. I am frustrated by docs looking at one nutrient in isolation. I think the best approach is to supplement with Vit B-12, calcium, Vit. D, and take a multivitamin, and to eat as many vegetables, fruits, olive oils and meats (esp. fatty fish) as possible. See this link for some important information about the diagnosis of B-12 deficiency, we should actually look at methylmalonic acid and homocysteine levels instead of B-12. Take heart about the British system, even at the best hospital in the US, they measured B-12 in my case, I had to request methylmalonic acid, and no one has done homocystine. We have to be in charge of our own health.

http://www.aafp.org/afp/20030301/979.html

Best of luck - Taylor

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Is there harm in trying a B-12 shot for persistent feet tingling if it appears you're OK? Neurologists haven't come up with anything else causing it.

B-12 570 (180 - 914)

Homocysteine 12.3 (3.7 - 13.9)

Methylmalonic acid <0.1 (0 - .4)

Gliad ABS, IgA/IgG showing:

IgG was 7.0 with 25 or less negative

IgA was 35.8, with 30 or greater positive

(awaiting more celiac test results from neurologist and Enterolab)

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I can take B tabs, but when I do that, it turns my wee yellow, which I thought meant my body didn't need that much??? ....

I found pissing fluorescent yellow a bit disconcerting, so did a web search and it seems that everyone who was prepared to post on that subject exhibits that phenomenon after taking b complex tabs.

further web searches indicate that it is B2/riboflavin which is yellow and responsible. A B12 colour search revealed:

Because of the striking dark red color of its crystals, vitamin B12 has been called "nature's most beautiful cofactor." :lol:

and

Vitamin B12 has no known toxicity and B12 surplus to requirement is simply passed out in the urine (which may discolour pink).

cheers,

Mike

PS I'm on this thread coz me too, I have peripheral neuropathy - its got a lot better better, but I still get numbness in hands and tend to drop things. Some of the information posted here is news to me, I didn't realise that sometimes extra vit b12 can help even when it tests normal in the blood. Mine was tested at 912 which > 200. But given my symptoms plan on giving sublingual b12 a go. Houston supplements in the US from which I mail order other stuff does it.

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Has anyone on this board with celiac-caused neurological problems, honestly recovered? How long did it take for you to get well enough to notice after going gluten free?

I had horrible migraines for years, usually 3 a week. I would just get over one (using a ton of medication) before the next one started. I have not had a single migraine since going gluten free.

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unknown digestive stress..
you say?

Have you considered probiotics? The reason being that if you suffered some digestive disturbance in your gluten days, then almost certainly you disturbed healthy flora and might have overgrowths of unwelcome bacteria (there are many candidates; in my family members I have had experience of klebsiella (still ongoing) and h pylori and I suspect clostridia in my son).

Some of these were treated with antibiotics, but I am using probiotics in my son (suspected clostridia) and I have noticed an improvement. But his symptoms were less gut - more psychology, although different bacteria have different symptoms.

I have seen it well described in the book by Natasha Campbell-McBride "Gut and Psychology Syndrome", but there is plenty of other good probiotics literature around.

you say?

oops, forgot to add that B12 is made by some of the good bacteria in the gut. If those are wiped out then you would need to supplement B12.

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My thyroid values are ok now (not sure what they are) so i don't think it's that.

Susie, You may want to check this further. The synthetic Thyroid meds do this - get the lab results looking normal but do not stop all the symptoms of Hypo. The natural Thyroid meds contain all the T hormones in correct amounts and seem to work better.There is lots of info available about all this now available on the web.

Have you tried sublingual B12? Its hard to get the shots there - isn't it / But you may find that the sublinguals work after a while.

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cheers for the probiotic suggestion SurreyGirl, I didn't realise the friendly bacteria made b12. I've only been tested for H-pylori, was negative (the only thing my docs understand). I'm actually taking in 3 to 4.5 billion of the little friendlies every day :) Together with the Houston No Phenol brand of enzyme they keep the candida at bay for me, makes a big difference.

you mention the psychological effects of unwanted bacteria, I used to hang out at group who you might already know, they are experts on that subject. Members are mainly mums of autistic children, but some are like me and just there for general enzyme health knowledge. I use the No Phenol enzyme for its fiber digesting capacity, but a lot of the mums on that group use it to break down substances that cause bad moods in their children.

http://health.groups.yahoo.com/group/EnzymesandAutism/

Mike

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Not sure whether to use B12 supplements, can too much hurt you?

My doc didn't even mention it and my level was 218, before celiac diagnosis. That was over a year ago, have been gluten free and gastro issues mostly gone but still have spacey days and disconnected feeling (medicine head) and forgetfulness sometimes. Would B12 pills help with this?

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Covsooze, a B12 level of 387 is not high at all, it is very low in the range of B12 and some people need a lot more B12 then others. With celiacs, many times we do not utilize our vitamins the way non-celiacs do. Some doctors do not know enough about B12 to give good advice, be honest, a doctor can't know everything! The fact that your GP isn't concerned, concerns me.

As you say, "wee" turns bright yellow with B vitamins, yet that is only because we lose the B vitamins on a daily basis. There are some vitamins that our body just naturally throws away and those of us who have B12 deficiency need to realize we must keep the level where it is, our body can't do it on it's own.

I'm not a doctor, but I do read a lot and I ask a lot of questions. I, myself take 2400mcg of B12 daily and it just holds my neuropathy at bay. Mine has not improved with gluten free, but the progression has slowed considerably.

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I had a suspected stiff person syndrome diagnosis... so i read up on it and went to check for celiac. Amazingly yes, i was positive with antigliadin and anti ttg igA.

So i went gluten-free.

My gastro symptoms cleared up in about 3 months. I always thought I had IBS. Turns out is celiac, which is very rare for an asian.

 

My back is still super stiff though. Not sure gluten-free will help it  eventually?

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5 hours ago, jerrycho said:

I had a suspected stiff person syndrome diagnosis... so i read up on it and went to check for celiac. Amazingly yes, i was positive with antigliadin and anti ttg igA.

So i went gluten-free.

My gastro symptoms cleared up in about 3 months. I always thought I had IBS. Turns out is celiac, which is very rare for an asian.

 

My back is still super stiff though. Not sure gluten-free will help it  eventually?

Welcome!  These members have not posted in a long time, but newer members may have had the same issues, so it is good too bring  it up.  

I do know that neurological issues that are celiac disease related, are usually the last to heal.  I saw your earlier post in June.  This might help, but I have not had my GAD antibodies tested, but my thyroid antibodies have always been sky high.  I can not get my new doctor to check them but my nodules and enlargement are diminished (gone).  I think by healing from celiac disease, I have calmed down my thyroid attack.  Unfortunately, my thyroid was permanently damaged so I must take thyroid replacement (hormone) for the rest of my life.  

I hope you find answer.  In the meantime, if you need to vent or have an question, we are here for you.  

Edited by cyclinglady

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Thanks cycling lady!

 

yea last to heal is better than not healing. the worst part is not sure whether going gluten-free will solve the main issue or not. gluten-free has solved my gastro issues which werent that bad to begin with, but of course i m glad. The thing now is the stiffness

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Gluten free might not solve all your problems, but it can help.  It did help my thyroid (see my edited response).  Cured?  I do not think so.  Read about a blogger with RA.  She improved on a Paleo diet, but after a year or so, her RA progressed.  So, diet is not the complete answer, but it can help in my humble opinion.  

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Hi Jerry,

You may be low on some vitamins or minerals.  Our gut is damaged by celiac disease and that makes it hard to absorb nutrients.  The B vitamins are important for nerve operation so is good to take B complex.  Vitamin D is also important for many things in the body.  Your doctor should be able to run a blood test for vitamin deficiencies.

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Thanks ya.  Before the blood tests, I was reading some papers on celiac and stiff person syndrome. I was thinking I might have celiac, so I had a lot of vitamin D3 daily.

Then I went to have the bloodtests and my Vit D levels were 40 + ng/mL, in my lab anything above 30 is acceptable.  I think I might be deficient initially, if I havent took like 10000IU daily for 1 month.

This whole saga is still ongoing, and is really surprising to be diagnosed to be celiac because of back issues.  I think i would never have been diagnosed with celiac if I had not have this stiff syndrome.  My gastro issues were chronic but they always only last in the early part of the morning, and it has never really bothered me.

 

I still cannot come to terms that my stiff back has something to do with celiac.  It might be coincidental?  I dont know..i really dont know.  I tell my family I have celiac and it might have something to do with my back.  No one believes me, but yes they do advise me to go gluten-free.

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Guest

For me story is different. I always had digestive issues and weak body/muscles/bones, anemia, dry skin eyes and all other symptoms. One day i decided to start working out and after months of effort, i started to see significant improvement in my body and brain. But something was wrong, as soon as i came out of gym everything was great but sfter having lunch i would go to messed up version of me. This kept on happening for months, until i realized i have gluten intolerance. After i went gluten-free, these sudden state switch stopped.  So yes, neurological healing is possible, but it needs effort. Gym, running, yoga, meditation and really healthy food. Eat lots of veggies, fruits, almond and all possible gluten free unprocessed healthy food. 

For meditation, searh on Google "inner engineering by isha foundation" , that helped a lot.

Edited by Guest

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6 hours ago, Aitrom said:

For me story is different. I always had digestive issues and weak body/muscles/bones, anemia, dry skin eyes and all other symptoms. One day i decided to start working out and after months of effort, i started to see significant improvement in my body and brain. But something was wrong, as soon as i came out of gym everything was great but sfter having lunch i would go to messed up version of me. This kept on happening for months, until i realized i have gluten intolerance. After i went gluten-free, these sudden state switch stopped.  So yes, neurological healing is possible, but it needs effort. Gym, running, yoga, meditation and really healthy food. Eat lots of veggies, fruits, almond and all possible gluten free unprocessed healthy food. 

For meditation, searh on Google "inner engineering by isha foundation" , that helped a lot.

Your thoughts count, but do check the dates on post before responding. The previous post from here in 2016

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