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AliB

B12 Deficiency Symptoms

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I have not been diagnosed as Celiac although I had a blood test done on Monday. I have all the family history and health-related markers.

Because I could no longer cope with the stomach pain and diarrhea I started the diet straight away and within a few hours the pain had gone and the diarrhea had stopped. My stomach still gets a bit bloated which causes a bit of discomfort but at least it is not nearly as bad as it was.

Last night though, I noticed that my hands and arms kept going numb and when I tried to sleep I kept getting prickly feelings in my feet which kept me awake most of the night. I have read up on this and see that it can be indicative of B12 deficiency.

Has anyone else had this problem? How long after starting gluten-free did you get relief from it? Due to the gastritis (which I am sure was the problem), my stomach is not digesting very well and is, I am also certain, low in stomach acid. I have been taking Digestive Enzymes which help a little but they are unlikely to help the absorption problem. I saw the doc this morning but he suggested I get a blood test done at the end of the month when my HbA1C is done - thanks for the concern!

Any experience, advice or suggestions would be great as I am beginning to really suffer from the lack of sleep. It's sod's law isn't it - The first and second nights after starting the Gluten free I finally slept like a baby all night, now I am being kept awake by this!

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Oh yes. B12 deficiency can and does have the effect you are experiencing. I found great relieve of the tingling/numbing sensations, along with muscle aches and pains, and numerous other things after starting a sublingual B12 supplement. Then I also started with magnesium, which practically performed miracles for me. So those are the two things I'd recommend most. Do make certain that the B12 is methylcobalamin, to dissolve under the tongue.

I'm sure other will have some great advice for you too.

Hope you feel better soon!

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Don't just assume you have ordinary B12 deficiency. If oral supplementation doesn't make you feel better, look into pernicios anemia which seems to be more common among Celiacs than the general population.

Steve

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Please have your B12 levels checked before starting B12 supplements too. It's a simple blood test, just ask your doctor for a specific B12 level. And do not be surprised if he/she tells you that your level is fine when it comes back and it seems very low, most doctors have no idea what the B12 level should be and they assume a low level is fine, when it isn't. Let us know what you find out--ok.

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Don't just assume you have ordinary B12 deficiency. If oral supplementation doesn't make you feel better, look into pernicios anemia which seems to be more common among Celiacs than the general population.

Steve

Right. That's why I suggested a sublingual methylcobalamin supplement, because that's the only way to bypass the stomach, and any absorption issues there may be.

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My experience has been this: I had tingling in my hands and numbness in my feet, horrible weakness and exhaustion, depression and lost a third of my hair. My B12 was in the very low normal range. Everything else tested out fine, including thyroid. My doc put me on B12 injections and after a few weeks, I was 90% improved. This was in October, 2007.

My Enterolab testing came back yesterday and shows two celiac genes, gluten sensitivity and moderate malabsorption in the fecal fat test. I have been gluten-free for one month. My peripheral neuropathy symptoms have gotten worse after going gluten-free. :huh: I am persevering and hoping that I can heal in time and that it is a matter of a few months or so before this train turns around and the symptoms improve. I also get horrible migraine headaches and have had two since going gluten-free, which is a high number for me.

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I also get horrible migraine headaches and have had two since going gluten-free, which is a high number for me.

The first thing that comes to mind is that there may be higher levels of something that bothers you in the gluten-free foods you are buying (or making from scratch). For example, MSG is known to cause migraines, and a number of ready-made gluten-free products have that (though they typically hide it under another name). Check out www.truthinlabeling.org, and see if your symptoms match.

Other foods that you might not have been eating as often before going gluten-free may also contribute to symptoms. Things like soy, corn, peanuts, nightshades, etc. I've read many Celiacs can't handle canola oil too, and I did find that was the case for me.

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Right. That's why I suggested a sublingual methylcobalamin supplement, because that's the only way to bypass the stomach, and any absorption issues there may be.

Sublinguals go to your stomach too, the only B12 that bypasses your stomach is in shot form. OTC products like we see for B12 don't have to provide bioavailability data to sell them. Because B12 is a huge molecule, and the mouth surface is small, I don't expect much gets absorbed. I think most is dissolved in the saliva and swallowed. So just see that you take it on an empty stomach for best results. To be honest, you can chew it up and shallow it. Just know, the methylcolalamin is a much better source of B12 than the cyancobalamin.

My neurologist told me the best form of B12 is to get it in shots, that otherwise, most of it is lost in the stomach!

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Thanks so much for the answers, it has helped. I picked up some sub B12 this afternoon and have started and will be down to the nurse like a shot on Monday for a blood test. The doc gave me the sheet and I certainly will not be waiting till the end of the month. It's ok for him - he doesn't have to live with it!

You know, I remember my lovely Mum, about 3 or 4 months before she died back in 2000, laying in her conservatory in the sun, swathed in blankets, absolutely shivering with cold - like ice running through her veins. At the time, she and we thought it was due to a drug reaction. Knowing what I know now and thinking about previous and subsequent problems before she died, like the intense, unrelentless itchy skin, and the unexplained vomiting, I have realised, to my horror that this was Celiac, and these symptoms were almost certainly due to pernicious anemia and other deficiencies caused by it.

The possibility of Celiac was not raised until about 4 weeks before she died when a consultant suddenly put her on a gluten-free diet in the hospital. Unfortunately, by then, the damage had gone too far and it was way too little too late. They had had at least 7 months to deal with this and no one bothered to check her vitamin levels or put the pieces into the puzzle and come up with Celiac. So typical of the Medical Profession. Rather than look at the big picture they are only capable of dealing with one thing at a time!

Am I angry? Am I justified?

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The first thing that comes to mind is that there may be higher levels of something that bothers you in the gluten-free foods you are buying (or making from scratch). For example, MSG is known to cause migraines, and a number of ready-made gluten-free products have that (though they typically hide it under another name). Check out www.truthinlabeling.org, and see if your symptoms match.

Other foods that you might not have been eating as often before going gluten-free may also contribute to symptoms. Things like soy, corn, peanuts, nightshades, etc. I've read many Celiacs can't handle canola oil too, and I did find that was the case for me.

Thank you for this feedback. I will check out the site. I am avoiding soy and canola oil but do eat the other foods. I use some mixes but am preparing lots from scratch.

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Sublinguals go to your stomach too, the only B12 that bypasses your stomach is in shot form. OTC products like we see for B12 don't have to provide bioavailability data to sell them. Because B12 is a huge molecule, and the mouth surface is small, I don't expect much gets absorbed. I think most is dissolved in the saliva and swallowed. So just see that you take it on an empty stomach for best results. To be honest, you can chew it up and shallow it. Just know, the methylcolalamin is a much better source of B12 than the cyancobalamin.

My neurologist told me the best form of B12 is to get it in shots, that otherwise, most of it is lost in the stomach!

Actually, the soft tissue under the tongue does absorb the methylcobalamin. I've also read that this form is being used in the shots more and more. Studies have shown the sublingual methylcobalamin to be just as effective as shots. Perhaps your doctor was referring to another type, such as the cyano form, which still requires conversion by the liver, not to mention that the vitamin is combined with a cyanide molecule. Apparently, it is believed that the liver can deal with the cyanide without major problems. But really, does anyone really need to ingest a toxic substance? I'm sure my liver has enough to do already.

My information comes from various sources, including PubMed.

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I have tingling in my hands and feet and my B12 level tested at above normal. I agree with others that it may not be B12 related but due to another condition.

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I have tingling in my hands and feet and my B12 level tested at above normal. I agree with others that it may not be B12 related but due to another condition.

I had that before taking magnesium and B12. I believe it was the magnesium which helped the most with that. Just keep in mind that blood levels are not so accurate. And I've read many posts about how a supplement had tremendous benefits even when the tests showed normal or above normal levels.

Also, I've read that B12 is robbed from organs in favor of keeping the level up in the blood, which seems to confirm the deficiencies despite normal test levels. Just how much of this happens I do not know. But, since B12 has no known level of toxicity, there is no risk in trying a supplement to see if it works. But again, my bet would be primarily on magnesium.

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This is interesting.

I didn't get the tingling and numbness until after I started the Gluten-free. I am wondering if, because my digestion is beginning to absorb more, my body is now starting to need more because things are starting to work more effectively! I suppose it could also be due to the body finally having the ability to start sloughing off toxins. There has to be a reason why just cutting out the dairy and gluten would do this! Weird.

There is going to be lots of different changes going on that are bound to give out strange effects for a while until it all settles back down. I have added magnesium and hope that will help too.

How long have you been gluten-free, Muzz?

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This is interesting.

I didn't get the tingling and numbness until after I started the Gluten-free. I am wondering if, because my digestion is beginning to absorb more, my body is now starting to need more because things are starting to work more effectively! I suppose it could also be due to the body finally having the ability to start sloughing off toxins. There has to be a reason why just cutting out the dairy and gluten would do this! Weird.

There is going to be lots of different changes going on that are bound to give out strange effects for a while until it all settles back down. I have added magnesium and hope that will help too.

How long have you been gluten-free, Muzz?

AliB: My husband did not get the numbness and tingling until after going gluten-free too. He gets the shots once a month and they've diagnosed him with Restless Leg Syndrome too.

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Ok Riceguy--what I meant to say is: B12 sublinguals go to the stomach. As I stated, B12 is a huge molecule, and can not be absorbed--other sbulinguals can. You didn't do your homework.

Here's link from Medscape explaining what I meant, I'm sorry I didn't think to include it to begin with. My neurologist explained this to me because he doesn't want me to waste time and money on sublinguals. He feels too much of the sublingual is wasted in the tummy. He doesn't get a kickback either way. If I decide to do shots, I will not be doing them through his office, I would be doing them through my PCP, well, I will do them myself, and to be honest, the liguid B12 for shots, is much cheaper than sublinguals and you only need it once or twice a month.

http://www.medscape.com/medline/abstract/17109579

Since you must be a member of Medscape to read this study, I will also post the study:

A single-center, double-blinded, randomized controlled study to evaluate the relative efficacy of sublingual and oral vitamin B-complex administration in reducing total serum homocysteine levels.

J Altern Complement Med. 2006; 12(9):881-5 (ISSN: 1075-5535)

Yazaki Y; Chow G; Mattie M

College of Naturopathic Medicine, University of Bridgeport, Bridgeport, CT, USA.

OBJECTIVE: Reports correlating total homocysteine (tHcy) concentrations with arteriosclerosis have become a matter of interest amongst healthcare professionals and the public. Several commercial preparations of vitamin B complexes have been marketed as supplements intended to reduce elevated levels of tHcy. Among these preparations are those that have been specifically designed for sublingual administration. This study is designed to evaluate the relative efficacy of sublingually versus orally delivered vitamin B complex in reducing serum tHcy levels. DESIGN: Forty-one (41) subjects, between the ages of 50 and 80 years with total serum tHcy concentrations exceeding 11 micromol/L, were treated with a six-week regimen of vitamin B complex. Each B complex consisted of 1000 microg vitamin B12 (as methylcobalamin), 400 microg folate (as folic acid), and 5 mg vitamin B6 (as pyridoxine HCl). Participants in the study were randomized into two groups designated, retrospectively, as SL and PO. Members of group SL were given a sublingually delivered vitamin B complex and a matching orally delivered placebo. Members of group PO were given an orally delivered vitamin complex and a matching sublingually delivered placebo. A statistically significant reduction in tHcy values was observed in both groups upon completion of the 6-week protocol. RESULTS: There was no statistically significant difference in serum tHcy concentrations between SL and PO groups either before or after treatment, substantiating the idea that there is no difference in efficacy between the two methods of vitamin complex delivery.

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A statistically significant reduction in tHcy values was observed in both groups upon completion of the 6-week protocol.

This, and the rest of the study posted, seem to indicate that both oral and sublingual work, and work well. However, what they do not say at all (at least I don't see it) is what type of sublingual was used. There are different types, such as liquids, tablets, etc.

In the case of a liquid, I would agree that you're bound to swallow a considerable portion of it. However, since both groups in the study seemed to get what they are calling significant results, it doesn't appear to be the major factor. I do agree with that, since my main point about the sublingual B12 is that the methylcobalamin form is the one to use, as it bypasses the need to be converted and such.

That study also doesn't give any indication that the sublinguals don't get absorbed via the soft tissues under the tongue. Only that both oral and sublingual do eventually get absorbed. Of that I have no doubt, but given the malabsorption issues we commonly face, I prefer to take advantage of every pathway for absorption that I can get. If they do a study to compare absorption between a group with malabsorption, and a group with normal absorption, that would be an interesting one to see.

Also, the study doesn't examine the difference in effectiveness between shots and sublingual methylcobalamin. Again, I've read both are equally effective.

Pernicious anemia is when the stomach cannot produce sufficient (or any) of something called Intrinsic Factor. This is a vital first step in the absorption of B12 from food sources. The methylcobalamin form needs no conversion, so it goes straight to work. So if a person has such anemia, the methylcobalamin seems to be a must. I've also read that taking antacids can reduce or destroy the stomach's ability to produce Intrinsic Factor, and there seem to be a lot of members here who have frequent heartburn.

If anyone is interested, I'll see about digging up some of the articles I refer to, and posting the links.

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AliB: My husband did not get the numbness and tingling until after going gluten-free too. He gets the shots once a month and they've diagnosed him with Restless Leg Syndrome too.

Hi Debmidge. It's interesting that your husband didn't get these feelings until after he became gluten-free. One or two have mentioned taking Magnesium. Has he tried that?

I also get Restless Leg but have put that down to digestion. The main nerves run down the spine through the legs into the feet. I find, when it all reaches a certain point inside it seems to affect the nerves and I get Restless Legs.

Why I twigged on that on was that I used to get very itchy feet at certain times. When I checked the Reflexology chart, where the itching was equated with the Colon. Fascinating. Not long after I worked that one out, I was thrashing about in bed one night and my legs were just completely out of control. I was like that until 5am. Then I had a need to evacuate. After that I got back into bed and slept like a baby. Bowels empty, legs quiet, ahhhhh.

I would not be at all surprised though if there was not some deficiency lurking about that contributes to it. The Med Prof is so busy looking for yet another drug cure, they don't consider or ever look for that! The thing is, because of the GI/Coeliac my digestion hasn't been working properly for quite a while so that isn't going to help one jot.

Does your husband take extra Vitamins and Minerals etc.? I am hoping that once things have settled down and the nutrition levels have started to absorb properly and build back up inside me that my body can use, I will cease to have any other effects.

If your husband is still not absorbing enough nutrients, have you checked that he is not intolerant of other things that might be keeping the digestive suppression going? I not only have dropped Gluten, but also Dairy and have radically cut back on Carbs and sugar. I am Lactose Intolerant, but I also, like many others, do not process Carbohydrates/sugars properly. I thought, well, in for a penny, in for a pound! I have also noticed that I don't cope with tannins which is why tea makes me queasy and wine makes me cough. It's a bit of a minefield out there, but I'm working through it slowly.

I have to change my mind set and think not about the things I can't eat, but about all the things I can, and what I can do with them..........................

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From the articles I am finding, I think the answers can only be found within the doctors you finally decide to place your trust. The final decision is yours. I just found 2 different articles in the same site:

http://Spammers Use This To Link To Spam.com/?Vitamin-B12---In...l&id=832900

http://Spammers Use This To Link To Spam.com/?Getting-Vitamin-...e&id=434935

One says shots are really not necessary, the other says shots are better for some conditions. I even found one article that stated that sublinguals are much less expensive and that you can purchase a years supply of 1000 mcg for less than $20--I was wondering where they lived???? Then I saw the article was written in 1995!!!! I wasn't even thinking about B12 then!

Most doctors honestly are not sure how B12 effects us. Some believe it really helps, some feel we lose it in our urine. My PCP feels that the more I take, the richer ($$$) my urine, but, if I feel it is helping me, then he is all for my taking it. It can't hurt us. Most neurologists do understand that it does help with nerve damage, yet some are not sure how or why. I know it does. If I do not have it for a week or 2, I can tell the difference. B12 seems to be another one of those gray areas--not enough known yet!

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