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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lack Of B12 Responsible For Low Energy?
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Well, as I've always said in my posts, my blood test came back negative so I diagnosed myself as gluten or wheat intolerant.

Anyway, I've noticed that every time I drank a glass of milk in the past few days my energy levels had risen soon after. I studied on Google about the importance of B12 and how it can give people energy. In fact, B12 is given to the elderly to give their energy levels a boost! I learnt that food such as steaks contain lots of B12. I had some steak and milk, and today I had the energy to clean my whole house as well as do many other things. Is it a coincidence?

One symptom of low B12 is being manic. There were times when I displayed manic behaviour and I was talking fast to people, and I was writing articles (I'm an editor for some news websites) at ungodly hours of the morning. In a way I wish that kind of feeling would come back as it gave me great motivation, and it inspired me to write fresh material. People looked at me like I was crazy during those periods, but they were fun!

Anyway, after the manic periods would pass I began to think I was, perhaps, bipolar, but with the pieces of the puzzle I have been putting together in the past few days, it's making sense.

I know that "Celiacs" have been known to have low B vitamin levels, but I also read that even if you were just wheat intolerant that B12 deficiency does frequently occur.

Looking back, I didn't include a lot of B12 foods in my diet at all. I ate eggs, but they do not contain enough B12 to treat deficiencies. I ate some small tins of fish, and that is about it.

Anyway, if you are feeling low or you do not have much motivation to do much in your life then try eating B12 foods. You may just be surprised!

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Well, as I've always said in my posts, my blood test came back negative so I diagnosed myself as gluten or wheat intolerant.

Anyway, I've noticed that every time I drank a glass of milk in the past few days my energy levels had risen soon after. I studied on Google about the importance of B12 and how it can give people energy. In fact, B12 is given to the elderly to give their energy levels a boost! I learnt that food such as steaks contain lots of B12. I had some steak and milk, and today I had the energy to clean my whole house as well as do many other things. Is it a coincidence?

One symptom of low B12 is being manic. There were times when I displayed manic behaviour and I was talking fast to people, and I was writing articles (I'm an editor for some news websites) at ungodly hours of the morning. In a way I wish that kind of feeling would come back as it gave me great motivation, and it inspired me to write fresh material. People looked at me like I was crazy during those periods, but they were fun!

Anyway, after the manic periods would pass I began to think I was, perhaps, bipolar, but with the pieces of the puzzle I have been putting together in the past few days, it's making sense.

I know that "Celiacs" have been known to have low B vitamin levels, but I also read that even if you were just wheat intolerant that B12 deficiency does frequently occur.

Looking back, I didn't include a lot of B12 foods in my diet at all. I ate eggs, but they do not contain enough B12 to treat deficiencies. I ate some small tins of fish, and that is about it.

Anyway, if you are feeling low or you do not have much motivation to do much in your life then try eating B12 foods. You may just be surprised!

Have you actually had your B12 levels checked? You may need supplements. Most of us do. The sublingual kind seem to work best. A deficiency in B12 can definitely cause low energy and if you still have intestinal damage and aren't absorbing vitamins from food well enough, you may need to add supplements. Good luck!

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Have you actually had your B12 levels checked? You may need supplements. Most of us do. The sublingual kind seem to work best. A deficiency in B12 can definitely cause low energy and if you still have intestinal damage and aren't absorbing vitamins from food well enough, you may need to add supplements. Good luck!

Yeah, I knew about sometimes it being a necessity to have levels checked but I haven't so far. I may book an appointment with my doctor to confirm they are low. But I do think it's too much of a coincidence that I feel much better once I have had foods with B12. I have had sublingual B12 before. It may be time for me to purchase another bottle. Thanks!

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I get B12 shots and take suppliments, it took awhile to figure out but after 7 years being gluten free this year has been a hard one for me. I've been sick, as if I'm eating gluten, yet am not having issues with any other intolerences, it was almost like I was just always sick. Finally, my GI realized that my b12's were "freakishly low" which is why I was lethargic and having such terrible stomach issues (which also triggered anxiety issues). I'm going on half a year with the shots and my levels are still not in the normal range. The dr. is pretty convinced that I've had this deficiancy for quite a few years and it just wasn't looked for. I'd definitely get your levels checked and pick up some supplements!

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Despite the fact that my blood levels of B12 are high, I seem to have some symptoms of B12 deficiency--such as neuropathy. I have read that your body may not use the vitamin efficiently and so blood levels may not always be a good indicator of your status. Is there any test that would show this?

From Wikipedia (not always 100% accurate) "serum levels do not necessarily correlate with efficient utilization of B12"

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Now that you've put it that way I should probably get it checked again and look into it. I've gone through MONTHS of spacey/cloudy thoughts, weakness, and fatigue that get interrupted by some "normal". I'll feel so much better that I'll wonder how I even put up with all that for so long. But the sublingual tabs don't really help much and lead me to think something else is wrong rather than B12.

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I read on Google today that B12 is most easily absorbed by drinking milk. I think that's coincidental considering that in my original post I talked about feeling better after drinking milk!!

http://www.kaheel7.com/eng/index.php/health-a-medicine/377-milk-intake-prevents-memory-weakness-diabetes-and-gastric-diseases

http://www.daniwsconsciouskitchen.com/3/post/2011/4/vitamin-b12-vital-nutrient-for-good-health.html

Yeah, I'll probably ask for an appointment to see my doctor next week about my vitamin levels. I think I may need some shots.

On a sidenote, I think I accidentally got glutened AGAIN. I drank yazoo milk shake, and even though it's officially gluten free, they are made in factories where cross contamination can happen. I feel sniffly and anxious again. Grrr.

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I think I may need some shots.

Interesting links. Something to think about before you go for B-12 shots:

When I had an untypical bad reaction to thyroid medication some years ago, my doctor ran a battery of tests. After finding my B-12 levels were "dangerously" low (I think the reading was 90), I started going in for weekly, then monthly B-12 shots. But the shots barely moved the test results beyond 120, this was after he declared that I'd been shot up with "enough B-12 to last 5 years."

He then had me go in for a Schilling's Test at one of the local hospitals. What the test does is put radioactive markers on B-12 with and without Intrinsic Factor attached to it. I absorbed more without IF, to everyone's complete surprise. The radiology lab even had me come in to re-run the test for free just to make sure of the results.

Tired of forking out a $20 co-pay every month for a shot that was doing little good, I found that the cheap B-12 supplement under the Kroger stores in-house brand is derived from liver. I bought a bottle. Cost me all of 3 bucks. My B-12 levels shot up quickly to around 500 within the same period of time that shots only moved my numbers from 90 to 120.

My doctor said, "it's not supposed to work that way, but I can't argue with the numbers."

So before you resign yourself to paying for an office visit every time you get a shot of B-12, you might try a liver-based B-12 supplement first. The links you gave describing how B-12 is absorbed and processed, certainly point towards some credence for going this way.

You also need calcium to make the whole process work (probably why drinking milk works for you). I take a liquid form of triple calcium with fish oil from Applied Nutrition. It's expensive, about $10-15 for a 3-week supply at my local Walgreen's, but they don't sit in my stomach like a bunch of rocks like other calcium supplements can. The soft-gels also contain a fair amount of magnesium and 1000IU of Vitamin D per serving. I can't say enough good things about this product.

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Low B12 can cause mania??? OMG. :blink:

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Has any one tried these B12 Energy Shots (drink type shots) by "1st step for energy"? I haven't been able to find anything saying that they are or are not gluten free but I wanted to see if it would be an option for getting thing jump started for my wife in the mornings.

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Some docs will show you how to give the shots to yourself. It is extremely easy and cheap.

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Has any one tried these B12 Energy Shots (drink type shots) by "1st step for energy"? I haven't been able to find anything saying that they are or are not gluten free but I wanted to see if it would be an option for getting thing jump started for my wife in the mornings.

They are talking about B12 injections, not "shots" in the sense of drinking it. In a B12 supplement you ideally want methylcobalamin, not the cyanocobalamin in the 1st Step B12. Methylcobalamin is a natural form of B12 your body can make better use of. Their Energy for Life product has only 9 mcg of B12, nowhere near enough to reverse a deficiency.

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Despite the fact that my blood levels of B12 are high, I seem to have some symptoms of B12 deficiency--such as neuropathy. I have read that your body may not use the vitamin efficiently and so blood levels may not always be a good indicator of your status. Is there any test that would show this?

From Wikipedia (not always 100% accurate) "serum levels do not necessarily correlate with efficient utilization of B12"

the test measures B12 and B12 analog. If you want a better measure of sufficiency, get a MMA or homocysteine level done, if either is elevated, you need B12.

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I didn't know B12 deficiency causes mania, but I'd bet that it could. (I've got some mentally ill relatives one with bi-polar and one with mania, and recently the daughter finds she does better avoiding gluten and dairy, so she prolly has low b12, and her dad might also be celiac.)

About the intrinsic factor and absorption WestyPDX, that kinda makes sense seeing as you're a celiac. B12 with IF is better absorption because your body actively picks up the B12. This means the intestines react to it and make something to pick it up and then transport it across your intestines. B12 just straight up just gets passively absorbed, ie: it can pass through the intestinal solely based on diffusion/chance.

2 things: 1. celiacs intestines are damaged so whatever mechanism required for the active absorption of IF B12 is probably still damaged in you WestyPDX, and 2. Celiacs have larger gaps between for more passive absorption in your intestines, and so it makes sense for to passively absorb more B12 without the IF than a non-celiac.

B12 bound to IF will, like everything else, be able to be passively absorbed too, but it will also be a larger molecule and so is less likely to get passively absorbed.

I'm not doctor or anatomy expert, but it logically makes sense from the tibits of information I've learned for myself. I'd love for you to run it by your doctor and see what they say!

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I also use sublinguals. The swallow only pills sometimes make me SOOO sick. <_<

I don't seem to have any adverse reaction to the sublinguals, I keep them in my purse so I know I can get to them if I am feeling drained.

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I also use sublinguals. The swallow only pills sometimes make me SOOO sick. <_<

I don't seem to have any adverse reaction to the sublinguals, I keep them in my purse so I know I can get to them if I am feeling drained.

Be careful. You might want to pop a red bull, instead of popping a B-12. Better yet, go to a doctor and find out why you're low and medicate appropriately.

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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