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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

Can B12 Drop Severely When You Go Gluten Free?

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Hi, im back again with another theory.  I wrote last week how i started a gluten free diet and after about a month started to slur my words.  It got quite bad, tongue swelled up and i was finding it hard to form sentences.  I went to a and e, then did a brain scan.  I was sent for MRI told i probably have MS. I havent spoke to a neurologist yet, just waiting for an appointment.


Im trying to find alternatives to this diagnosis and it seems a coincidence this happened when i changed my diet.  I have been reading about b12 brain lesions.  I realised that first month of the diet i probably hadnt eaten anything with b12 in it. Im vegetarian and wasnt eating gluten free bread etc.  


After reading about b12, i starting taking some.  My speech came back after about 2 or 3 days of taking b12.  I have all the symptoms of b12 deficiency as i have cfs.  I also found this interesting article on fingernails




My are the exact same, ridged with blue skin underneath.


Anyway what i wanted to ask is do you think my B12 levels could have dropped much further in my first gluten-free month and caused speech problems and be the possible cause of the brain lesions?


This might be a stupid question-could i have had b12 in my blood before gluten-free diet but i wasnt able to absorb it properly, then i stop gluten and i suddenly absorb the b12 i have in my blood.  Then i dont eat any b12 for a month causing a huge drop.  Am i being mad?


Thanks for any help


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What are you eating?


It would seem to me that you probably had a B12 defiency all along and it is only a coincedence that it is becoming symptomatic now.


My Mom had undiagnosed celiac for years and years. She had so much damage that she never fully healed and had to get B12 injections for the rest of her life. After my Dad died she kind of gave up on life and eventually stopped going to the doctor. It took several months before B12 defiency symptoms started showing up and then they were so mild no one noticed at first. It was probably two or three years before it got critical. I tried SO hard to get her to go to the doctor but legally I couldn't force her. I even got her doctor to make a house call!!! She wouldn't let him in. :(

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I've mentioned this a few times, but it only makes sense to me, knowing the current research, that when a celiac first goes gluten free, they will be absorbing fewer nutrients than when they were eating gluten.



One of the findings of this study is that intestinal permeability in celiacs is increased higher, and for longer, when they eat gluten, compared to non-celiacs who eat gluten.


To me, this means that when a celiac stops eating gluten, their intestinal permeability is much lower than it usually is. (Low permeability means that not as much stuff is going to get into the bloodstream.)  Now, in a healthy person, not having increased permeability wouldn't be a problem, because all the surface area and mechanisms in the small intestines' villi are functioning normally. Of couse in a celiac the villi are pretty damaged, so you don't absorb nutrients in a normal way, we all know that. So until we regrow the villi, we don't absorb nutrients normally. 

What I take from it is when a celiac eats gluten, we can absorb nutrients as well as things that would never usually get into our bloodstream, in higher quantities than a person with a healthy gut..


This, for instance, explains why I never had an issue with lactose before going gluten free, as the lactose could have been absorbed into my bloodstream whole. Usually lactose gets broken down into glucose and galactose, which then gets absorbed. If it doesn't, then the body expels it whole and causes all the symptoms of lactose intolerance. It could also explain the 'gluten withdrawal' people talk about, delayed and immediate. Long-time celiacs will be low in nutrients already, but some of them are stored to be used when needed. But those stores are also finite, and so when they get used up, a week, or a month into your gluten-free diet, you could start showing deficiency symptoms. Other vitamins and minerals that don't get stored or whose stores are already depleted would mean more or less immediate deficiency symptoms when you go gluten free. Basically, until the villi heal enough to start working properly again, if you're already low in nutrients, initially being gluten free would make you sicker.

In your case, being a vegetarian, as you probably already know, unless you supplemented or ate nutritional yeast, you most definitely would have low B12 levels, since the only really usuable form of B12 in humans is when it's bound to some specific meat protein, where some membrane active transport mechanism binds not to the B12 but the protein it's on, to absorb it. (That's why B12 supplements are like 1000x recommended daily intakes.) In fact, you might find that you have to pay more attention to your B12 being gluten free. B12 we get from veggies and grains etc. is passively absorbed at like 0.1% or something ridiculously low. B12, being a larger molecule, would have a higher passive absorption rate when eating gluten due to the increased permeability of your intestinal barrier, possibly keeping your levels just high enough. But you won't have as much extra passive absorption unless you eat gluten. Even if you start eating meat right now, you'll still have to wait for the villi to heal enough such that the mechanism for getting the meat-bound B12 starts to work properly.


Most of this is just postulating, but it makes a lot of sense to me. It's still possible that our extra leaky guts when we eat gluten aren't leaky enough to make any noticeable difference in essential nutrient absorption.


I hope I'm being articulate enough with my idea, or not repeating myself too much.

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I think those nutrient deficiencies vary a lot from person to person. Some people seem to lose their deficiencies quickly and others take a lot of time, and then there are a few people like me who had celiac their whole life yet my nutrient levels are fine, or they execeeded the norm (like my B12). My D was near the low end of normal but hey, I live in Canada.  LOL


Leis, are you a vegetarian and that's why you haven't been eating any B12? If not, you might want to up your B12 intake (especially grass fed organic meat which will have more B vitamins in it). Sublingual B12 (cobalamin) tablets might help you get your levels up faster too.

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Hi, thank you all so much for your replies.  Cavernio, thank you for your great explanation.  It makes sense to me.  Ive never been diagnosed celiac but the lifting of brain fog ive had since i went gluten free makes me think i may be.  Im really hoping this is a b12 problem and not ms, obviously.  I would imagine i was very low in b12 when i started the diet because i was sticking to fruit, veg, nuts, rice and soy.  Also when i first started getting the swelling in my tongue i thought i was having an intolerance to something else and cut out dairy.  That would have made b12 even lower.


It all seems such a coincidence that this suddenly happened when i made a big change to my diet.  I dont know if a neurologist will consider b12 lesions or not.  Ive not spoke to one.  I went to the hospital 3 weeks ago, got a brain scan, they told me i had a brain tumor, stroke or ms.  Five minutes later they had me out the door and had to wait a week and a half for an MRI.  All ive had is a call from my GP saying they think its ms.  Im a total wreck just now!  I expected going gluten free to help me neurologically.


Ive been taking large doses of sublingual B12.  The inside of my cheeks swelled up last week, i took some iron and this took them down a good bit.  My tongue is still a little swollen though.  Sorry this is a bit disjointed, i wrote another reply and lost it.  Thanks so much for you help.



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Note that swollen tongue is a possible symptom of B12 deficiency, so it might not be the dairy doing it.

Make sure your next doctor visit, whoever it is, to tell them about your diet and your suspected b12 deficiency. I'm honestly a little astounded they haven't measured it in you before, b12 is one of the things every doctor I've met tests me for (I'm in canada and have no family doctor, so I've seen a lot of different ones.) I guess what I mention as symptoms aren't necessarily the same as yours though.

Anyways, get it tested and get the number from the test back. Different countries have different standards for deficiencies, you should be aiming to have your b12 at least as high as 400units, maybe even 500 (even if it's at 200units and the doctor says not to worry) probably not higher than 1000units. I've been taking b12 periodically for much longer than my celiac diagnosis because I knew I had so many symptoms of it, but only after I got a copy of my blood tests showing my b12 to be in the low 2 hundreds and reading that that isn't high enough by some country's standards. And whenever I get complacent with my vitamin taking, I get more tired.


I'm sure if you start to tell a doctor about what I've written, regarding leaky guts and celiac and it possibly being helpful while eating gluten, they'll look at you like you're crazy. Most aren't even aware of the most recent celiac research, much less able to make postulations about it.


I hope you don't have MS or a brain tumor or something that isn't solved by vitamin deficiencies too! It's probably worthwhile to look into other vitamin deficiencies as well. I think all the b complex vitamin deficiencies can cause neurological problems. I have personally started taking vit E, and it seems like it could be helping my peripheral neuropathy. Hard to tell though, because I've also changed my diet around the same time. I've never had difficulty with my speech, but it's all just about what nerve is affected with a neurological issue.

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Sorry for double-post, just read your other topics leis.


First hit in googlescholar for b12 brain lesions:



Another peer reviewed article:



"Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients."



Definitely, definitely, definitely mention the possibility of B12. I'd print off the abstract and bring it in for them. Hell, I'd be tempted to pay the money and print it off and bring it in.

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Leis I hope you don't have MS, my father was diagnosed with MS about 10 years ago after some seizures where he would be practically fine one minute and paralysed the next and not able to walk hardly at all for days or weeks. He had a MRI and which showed brain lesions about 10 years ago and he immediately went dairy free got on the vitamin D and on some crazy auto immune diet (I wasn't interested at the time). In any case a few months later after some more testing they told him he didn't have MS after all, my father to this day maintains he cured himself!:) he did still have some episodes of seizures for but they are getting less and less dramatic and less often as the years go past.


In the end his current doctor thinks it was a build up of the old anti histamine polaramine which caused his problems. I guess it's possible.


I myself was a strict vegetarian for 20 years and it took about 15 years before I was chronically sick from low B12 (with numb extremities and abdominal bloating), but I would blame my undiagnosed celiac before the vegetarianism. This is a bit of a coincidence I read your story actually because I friend of mine just told me yesterday his grand daughter might have MS and or be extremely low in B12 (she was low in B12) but is still undergoing testing. Even if you do have MS I think following a SCD diet or something like that must help hold it steady like it does for all auto immune conditions and I'm sure you know one of the prime suspects in MS is vitamin D deficiency so make sure you get that up well over 100. Most of us on here are not able to absorb B12 anymore because of small intestine damage and are on B12 injections, it's a good idea to get that up to around 1000 (I don't feel well unless my B12 level is around 1000).


Good luck and lets hope whatever you have fixes itself eventually with vitamins and diet.

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Thank you for replying again, its very kind of you all.  Cavernio, i will take the article in with me.  I was going to take one about gluten ataxia too.  I hope it doesnt get the neuros back up.  I cant get an appointment for another two weeks!  I have been downing lots of b12 and the tingling extremities and hands falling asleep ive had for years is alot better.  So i know i was deficient in it, whether it was bad enough to cause brain lesions i dont know.  I really hope so.


Thanks Foam for telling me your dads story.  Thats amazing he managed to cure himself.  I have had ME/CFS so 11 years and have tried everything under the sun to try and cure myself.  Some absolutely ridiculous things!  For some reason i never really did much with my diet.  My stomach was the one thing i didnt really have any problems with so i didnt think it would help.  Since starting the gluten-free diet i am amazed at the brain fog finally lifting and wish id done it years ago.


At the moment im having trouble with the diet.  Really aggravated stomach, it really hurts.  Cant understand because im on such a strict diet.  Im definitely not getting cc so i must be developing more intolerances.  Its making me much more tired and a bit of brain fogs coming back.  In a strange way, at least the pain and the trying to work out whats going on in my tummy, is taking my mind of the suspected ms.


Thanks again


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