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B12 And Celiacs


I hate gluten

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I hate gluten Apprentice

Is a b-12 deficiency normal with Celiacs?


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Tallforagirl Rookie
Is a b-12 deficiency normal with Celiacs?

It's not the most common vitamin deficiency amongst celiacs, but mine was on the low end of normal.

Lovey25 Rookie
Is a b-12 deficiency normal with Celiacs?

I don't know, but I'm convinced I have one -- and have been convinced of it for a very long time. I've been taking a vit B complex pill for a few months now to no avail. :(

labbott Newbie

yes, b12 deficiency is very common for us. I had to take sublingual methlycobalamin in order to get my levels up. Just taking sublingual cyanocobalmin didn't help me.

Mother of Jibril Enthusiast
I don't know, but I'm convinced I have one -- and have been convinced of it for a very long time. I've been taking a vit B complex pill for a few months now to no avail. :(

It would really be a good idea to get your level checked and track what happens over the next few months (if you are deficient). People with pernicious anemia... another autoimmune disorder that tends to cluster with celiac disease... are unable to absorb B-12 through their stomach. From what I understand there are two solutions to this: either take it sublingually (letting the B-12 dissolve under your tongue so it goes straight into your bloodstream) or get regular B-12 injections.

If you have PA, even huge doses of regular supplements wouldn't help!

mushroom Proficient

I tried the sublingual B12 because I suspected I was deficient, but had a reaction to something in it. I then had to convince my PCP that I was deficient. I was low normal in September, 10 mos after going gluten free. Just had it rechecked and both my B12 and folate levels have dropped since Sept., B12 barely normal and folate now below, so I am finally going to be getting B12 shots, and a folate prescription, along with a B vitamin supplement. However, the pharmacist just called and can't find any gluten free folate at the levels prescribed. Gluten free meds are a big problem here :( I may just have to take multiple tabs of a lower dose. I am hoping with these three supplements I will start feeling less lethargic :P The good news is that my Vitamin D levels have come up a lot with supplements.

I have to tell my doc everything I need because she doesn't know much about celiac. My next task is to work on her about my thyroid--one thing at a time!!

ravenwoodglass Mentor

The areas in the small intestine that gets damaged by celiac are the same areas that our body needs to absorb and utilize B12. So a B12 deficiency is not uncommon with celiacs. The supplements in pill form that you swallow are not able to be used by the body until we heal. For that reason we need to use sublingual forms to get this vitamin. B12 can cross the mucousal tissues in the mouth and bypassing the gut gets it into the body. B12 is also stored by the body and it can take some time after we stop utilizing it before this will show up in blood work. Taking a supplement with folate can also make the B12 show falsely high levels. It is a vitamin that has no toxic levels and supplementing with the sublinguals will not hurt you. If you are having indications that B12 is needed, commonly nerve issues like tingling in the hands or feet, you would be wise to pick some up.


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I hate gluten Apprentice

I started the celiac diet before testing, I did not care if the test was neg or not. The diet helped tremendously. So I headed to the doc one week later (last week) and gave him a list of blood work i wanted ran. He told me that vit deficiencys only happen in menopause woman and geriatrics. (im 28), Got a phone call today that all my test came back normal not spuprised. But my b12 was so low they did not know how I was walking or not neurologic by now. Scary. So I have to start injections. Asking what could cause it they said it was just diet realated! WHATEVER I told them I am far from a vegatarian and that I crave meat and my diet is very similar to the south beach/ atkins. (supossedly b12 in food relation is from not enough protein, and I sooooo do not have that problem) So I will get the injection today and have my blood monitored from there. Sounds fishy to me, need to do some more research into it any ideas where to start?

Marcydawns Newbie
I started the celiac diet before testing, I did not care if the test was neg or not. The diet helped tremendously. So I headed to the doc one week later (last week) and gave him a list of blood work i wanted ran. He told me that vit deficiencys only happen in menopause woman and geriatrics. (im 28)

I am 28 as well. I have a b-12 deficiency. I had to get injections and now I take a 2500mcg sublingual every day (nature's bounty is the only brand that makes it). I just don't get where some doctors get their ideas from!

I am also severly iron deficient... that is also normal with Celiac.

RiceGuy Collaborator
I started the celiac diet before testing, I did not care if the test was neg or not. The diet helped tremendously. So I headed to the doc one week later (last week) and gave him a list of blood work i wanted ran. He told me that vit deficiencys only happen in menopause woman and geriatrics. (im 28), Got a phone call today that all my test came back normal not spuprised. But my b12 was so low they did not know how I was walking or not neurologic by now. Scary. So I have to start injections. Asking what could cause it they said it was just diet realated! WHATEVER I told them I am far from a vegatarian and that I crave meat and my diet is very similar to the south beach/ atkins. (supossedly b12 in food relation is from not enough protein, and I sooooo do not have that problem) So I will get the injection today and have my blood monitored from there. Sounds fishy to me, need to do some more research into it any ideas where to start?

If you're still healing, it may just take more time for the digestive system to derive enough B12 from food. The shots should help get your levels up much more quickly than they would on their own. From what I've read, the body will rob organs and tissues of B12 in order to keep blood levels up, which it seems may be one reason why many find supplementation helpful even when blood tests say it's in the normal range.

One area to start researching might be Pernicious Anemia. Even if your intestines can do their job, if the stomach can't produce sufficient amounts of what they call Intrinsic Factor, you can't absorb adequate B12 from foods. This condition can develop from a few things, including prolonged antacid use. Supposedly, it is permanent.

Also, look up Apple Cider Vinegar. This can help the stomach, though I'm not sure if Pernicious Anemia can be repaired. Make sure it's Raw, Unpasteurized, and Unfiltered.

Another thing that may help is betaine HCL w/pepsin. If you have poor digestion and heartburn, it can help improve them.

harp1 Apprentice

I have the tingling and numbness in my hands (musician-a problem) so I'm taking B12 shots for that and magnesium shots for my tremor, makes a big difference. My endochrinologist sells the viols for the shots (I'll have a friend help me out). PM me if you want more info. Also taking B12 orally. Susan

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    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
    • Theresa2407
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For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. 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This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
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