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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

B Vitamin Weirdness. Does Anybody Have Any Experience With This?
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SeijaRogue    0

Okay, so I have been gluten free for several years.

 

I was the first to need to in my family.  Shortly after my first blood test which did come back negative, while my electrolytes were badly falling amid a host of symptoms including digestive, it was recommended to me to try a gluten free diet (by a nurse practitioner whose daughter had diagnosed celiac, and who recognized the symptoms), and so I stopped short of getting an actual Celiac diagnosis.  Though, later, another member of my family on my dad's side did get an official one, and I have another relative who I suspect would, if she would get tested. 

 

So probably, it is very likely that I actually do have Celiac and had a false negative.

 

Anyway,  for these years, I would have these random days that I might get once every few months, where I had energy the whole day, and my brain was just "on" and I could never find the missing link.

 

And then, also, along the way, I discovered that I would get occasionally really depressed, and for some reason taking a B complex really helped with that. But at this point, I didn't really regularly supplement.

 

I did start regularly supplementing B's and calcium this summer, when I got really bad and extreme energy loss, and that helped.  It wasn't those wonderful odd days like I talked about, but I definitely felt "better."

 

And then this fall.

 

I have asthma as well, and I got bronchitis this September.  I had to be on a medication that glutened me for several weeks for my breathing.

 

And that is really when it all started.

 

I think I must have sustained more damage in the area that B vitamins are processed, because I would take two ( and I calculated each of the values and made sure I wasn't going to receive a toxic dose by doing so on the off chance that I was absorbing fine) a day, and for a magic hour or two (and on some really lucky days, three) I would be great.  Cognitively clear, mood fine and memory good.  And then my body would process through the little that I had absorbed and I would crash.  My mood would become severely depressed, my cognitive and memory skills would massively decline,

 

I went on like that for weeks (I remember that though my B vitamin levels were barely above the low mark before I went gluten free, that they were and the doctor's didn't think anything needed to be done there, so I didn't think tney would be much help), just trying to supplement enough on my own.  But I was basically a useless bawling mop on the floor for most of the hours every day.

 

And then just about three/ or maybe four now, weeks ago, there was this wonderful sign on wall, an advertisement that my gym had put up for B vitamin shots (both b 12 and a b cocktail shot).

 

You can bet everything I hauled mine in to try that.

 

And it was a bloody miracle.

 

For about four-ish days straight, my mood would be perfectly even, my mind really clear, my memory on-target.  Now, unfortunately I can only get these shots at certain days and certain times because of when the doctor who does them is actually in.

 

And if I miss the window, I'm back to being the cognitively and memory impaired limp bawling dishrag on the floor, and often when I'm like this, the whites of my eyes have turned a funky greyish yellowy sort of tinge, until, of course, I can get the shots again, and then I am good for several days again.

 

I mean, what is going on here? 

 

Does anybody else have any similar experiences?

 

 

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I had low B in spite of supplementation.  You need your villi to heal if I guess right.  You aren't able to get much through your small intestine.  If your villi is that damaged, you may be having trouble breaking down your food.  According to my Functional Medicine nurse, you may want to take digestive enzymes to help break down your food while the villi heal.  My B levels were good at my last check.

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cyclinglady    723

Can't help you with the Vitamin B issues, but I am astounded that you took meds containing gluten. Maybe you need to review the newbie thread on going gluten free. It is very helpful.

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

I hope you feel better soon.

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Before my diagnosis I was starting to get weird mood swings that were very uncharacteristic for me.  I am going into the whole pre-menapausal thing so I figured it was just hormonal.  I would wake up some days extremely angry.  Like ready to kill angry.  Then one day I had a crying fit - for no reason - that was so volitile (for lack of a better word) that it scared the crap out of my cat.  I would wake up other days on cloud 9 - again, for no reason.  Some days I would have a really, really short temper - which is also not like me at all.  Then I started taking a B-complex (I went with Relacore, which also has a couple of other herbs in it for mood) and I haven't woken up wanting to kill anyone since.  Stress uses up your B-vitamins very quickly... and with Celiac you're not only not absorbing much out of your food but your body is also under a lot of stress - so it seems reasonable to me that we would be going through a ton of B-vitamins.  The good thing about B-vitamins is that they are water soluble and whatever you don't absorb and use right away gets flushed out with your pee (just make sure you're drinking enough water every day).  And they can turn your pee bright yellow, so don't freak out about that if that happens.

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skullgrl    2

I give myself weekly B12 injections, they just changed what the lowest normal level is. I used to give myself monthly but I knew I wasn't crazy when it would only help for a little bit! They help me quite a lot. My doctor said that for 2ish months try once a week, then go to every two weeks and then once a month. You need to build up your stores again.

 

Taking medication with gluten in it was foolish and really dangerous, there should always be an alternative medication or another company who makes it that contains no gluten. Please be careful!

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shooz    2

Yes! I've been experiencing the exact same things. I had noticed crashes after taking a B complex over the past few months (which was probably due to other stressors such as gluten cross contamination, adrenal fatigue, etc). I stopped taking them for awhile then took a B-complex for the first time in a while on Friday. Later that day I started to feel really "off" and  basically catatonic. I have this happen every so often. I end up staring at a wall for hours. I popped a lozenge that had 5000 mcg methylcobalamin (active form of B12) and within 15 minutes I was up and moving again. And I've been amazing ever since.

I've been reading a lot of about methylation and how it relates to folate and B12. Methylation is very important to the body, and you don't want to be either overmethylating or undermethylating. From reading around on other forums, I know that if you take too much methylfolate without enough B12, it can cause a block in the methyl cycle, which is not good.  My theory is that I don't absorb the B12 from the B-complex very well (B12 is notoriously difficult to absorb, especially for us with villi damage), so I end up getting a huge dose of methylfolate without the accompanying B12. 

Maybe you should try a methylcobalamin sublingual for when you can't get the shots (I think Klaire Labs has a good gluten free one, but you should double check :) ).

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cristiana    76

Looking back, my first major symptom of celiac disease (apart from occasional D. which I just assumed was IBS or a nervous stomach) may have been mouth ulcers about eight years ago.  They never tested my B vitamins then but I think it was probably down to a deficiency.  I had another bout about two years ago.  I took a vitamin supplement fizzy drink which had lots of Vitamin C and B vitamins in it and the ulcers went.   Never thought more about it.  

 

Then September 2011 I had such bad anxiety that came from nowhere that I went to the doctors.   I was severely iron anemic so was prescribed iron supplements but I also  decided I would take that same vitamin supplement again in case it helped and I noticed that my anxiety was reduced.  It literally made a difference in hours after taking it.  Blood results showed I was only just above normal levels for Vitamin B12 so I googled and discovered that Vitamin B 12 really helped with anxiety so I continued with the fizzy vitamin drink.   I am so thankful that I found something that really helped so quickly.  Except that when my gastric symptoms really started   with a vengeance this same fizzy drink made the D worse and hurt my stomach, so I stopped taking it!  I guess by then my villi were really damaged.  A blood test by another particularly conscientious and experienced doctor revealed I had celiac, later confirmed by endoscopy.

 

My nutritionalist still says my B12 levels aren't ideal, just under 200, and she says she is surprised I wasn't offered injections by my doctor.   However, the minimum level here in the UK is far below what is considered normal in other countries.  So 'off my own bat' I have started taking B12 sublingually, not really for anxiety because that is almost gone but because of tingling in my hands and feet, which is slowly improving.  The one thing I have noticed is I can't take it late in the day as it makes me much more alert and I find it hard to settle at night. So if I take it, I take it in the morning.   

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Greebo115    9

My nutritionalist still says my B12 levels aren't ideal, just under 200, and she says she is surprised I wasn't offered injections by my doctor.   However, the minimum level here in the UK is far below what is considered normal in other countries.  So 'off my own bat' I have started taking B12 sublingually, not really for anxiety because that is almost gone but because of tingling in my hands and feet, which is slowly improving.  The one thing I have noticed is I can't take it late in the day as it makes me much more alert and I find it hard to settle at night. So if I take it, I take it in the morning.   

 

 

cristiana, can you tell me what sublingual B12 you get, and where you get it from?

I'm in the UK too and can't find any subligual.....only tablets, thanks.

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cristiana    76

cristiana, can you tell me what sublingual B12 you get, and where you get it from?

I'm in the UK too and can't find any subligual.....only tablets, thanks.

Sorry Greebo - I've only just seen this.   I buy Solgar Vitamin B12 from my local health food shop - but I see that they have an online shop - I've just found it: solgaronline.co.uk

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Greebo115    9

Sorry Greebo - I've only just seen this.   I buy Solgar Vitamin B12 from my local health food shop - but I see that they have an online shop - I've just found it: solgaronline.co.uk

 

Thankyou! I've bought solgar products before - I think they are a quality products, but I missed that they did the sublingual B12 - I'll be getting some this weekend!

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Pegleg84    50

Oh, this is perfect. sorry I didn't see it when the OP first started the thread.

 

I've been dealing with the horrible ups/downs lately too, anxiety coming out of nowhere, barely able to haul myself out of bed. Nothing I can really pin on a glutening or anything else, or even the winter weather. I've also been getting headaches, tingly fingers/face, a lot of other things that have been linked to low VitB. I picked up some sublingual B12 (1000mcg) just last week, and I haven't been taking it regularly but I think I might be starting to make a difference. On Tuesday I had one of those unusually clear days. A "man! I'm actually awake and alert and feeling good! What's going on?!" kind of days, and then yesterday I was back to "bleeegh just let me die in this bed" and had to cancel a friend-date. I took some B12 last night, and today am feeling ok. I'm going to try to take is as regularly as possible and see if it makes a difference. Also trying to remember to take my calcium and VitD.

 

It definitely has to have an impact though. I remember a friend back in university going through some tough depression, cronic fatique, etc. He swore Vitamin B pulled him completely out of it. I've also always been on the borderline of low levels, kind of like my iron (which I should also start taking again).

Hopefully it'll help get the energy back and get through this goddawful winter.

 

Cheers!

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