Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Vitamins


roxie

Recommended Posts

roxie Contributor

Hey! I have been reading a lot about Celiac Disease and vitamin B12. Do we need to take this if we are already eating healthy and taking a multi-vitamin everyday? What about calcium? Or, is this just for people who are still having specific problems? I have chronic back pain and thought it might go away after going gluten free. It has not so far. :( My back is now really having trouble keeping up with my new energy level from eliminating the gluten. I am SO HAPPY to have energy again, but my back is still preventing me from being as active as I want to be. I have done all kinds of treatments, and I am now doing physical therapy. I have read so much information that suggests that people with celiac may also have other auto-immune diseases that cause a lot of pain. I had blood tests done for lupus and rheumatoid arthritis (which runs in my family). The test for lupus came up positive, and she ran the test again, and it came back negative, so she said I did not have it. How can it come up positive one time and negative the next?? I am trying to avoid pain medicine, because I was on that for quite awhile (and then became addicted). Not fun getting off of that. Advil barely takes the edge off. Anyway, I want to be as healthy as possible right now, and am just wondering what kind of extra vitamins I should be taking. Thanks!! Roxie


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

If you search the board for methylcobalamin, you'll get plenty of threads on B12, deficiency symptoms, and so forth. In short, I'd highly recommend it. Research suggests methylcobalamin is the best form of B12 to take, and it most certainly does have tremendous importance for nerve health. Searching Google will turn up places where you can get it. Another important nutrient which I'd recommend is magnesium. This turned out to be even more beneficial to me for addressing the muscle and nerve pain than was the B12, though both together have been practically miraculous.

As for lupus and such, many people are being misdiagnosed with all sorts of things, when all along Celiac is the real issue. So I personally find it difficult to take such diagnosis seriously. After all, something has to cause these things, just like something causes cancer, diabetes, etc. It's just that modern medicine has yet to figure it out. I've seen many posts from members who had been diagnosed with severe fibromyalgia, only to discover later that they're gluten intolerant. Once gluten-free, the fibro simply goes away. As you might readily detect, I'm not a fan of western medical practices, so I'd suggest each person make up their own mind.

I've only found one multi-vitamin so far that has methylcobalamin. Most seem to have cyanocobalamin, which is actually made by combining cyanide with B12 in order to make it an active form. Apparently, they say the liver can deal with the cyanide without much of a problem, but as for me, I think I have enough problems without adding to it.

Guest hightop girl

Hi Roxie,

I have to give myself B12 injections because I was so anemic and have some autoimmune thing with my stomach.

roxie Contributor

Do I have to do injections, or could I just simply take it in pill form? I also saw an add for B12 patches that would only have to be applied once a week.

ravenwoodglass Mentor

I would get sublingual B12 tablets. They bypass the gut the same as the injections. They are absorbed through the membranes in your cheek and gum. Most of us need B12 supplementation because the same area that is damaged in our guts is needed to produce something called intrinsic factor. Without that our gut can't use B12 from food or supplements. B12 can help brain and nerve function and repair a great deal as well as helping with energy.

MaryJones2 Enthusiast

I think all of the B Vitamins are very important and it never hurts to have a little extra. I also give myself B 12, complex and folic acid injections and can tell when I skip one.

Odwalla makes a great fruit smoothie product called Blueberry-B Monster that is very high is B Vitamins. It's a staple in our house - expensive at $8 for about 1/2 gallon but we don't eat meat so we are lacking in the B dept. I mix 1 cup of Blueberry B with 1 cup of Living Harvest Hemp Milk in the AM.

darlindeb25 Collaborator

Be very careful with B6, you can take too much B6 and it will do more harm than good. It can cause more pain. Read up on it before adding it to your diet.

B12 is very important to most celiac's. I read, not to long ago. our biggest source of B12 comes from grains, mostly from wheat. So, yeah, I'm pretty sure we all need B12. Methycobalamin is the best source of B12, cynacobalamin is much harder for us to absorb and we lose too much of it in the process. I get my B12 from www.Lame Advertisement.com. I get Biochem by Country Life, I take 3000mcg daily now, I started out 3 yrs ago taking 1000 mcg. I have peripheral neuropathy and I do feel the B12 has slowed the progression. The Biochem B12 I take has 400 mcg of Folic Acid and 50mg of Vit C with it.

As for B Complex vitamins--taking too much of them is a waste. Our bodies only need the recommended daily doses and the rest is eliminated. My sister is celiac and a dietician and she told me that B Complex vitamins just leave our body daily, so don't waste my money on them.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator
I read, not to long ago. our biggest source of B12 comes from grains, mostly from wheat.

I don't know where you read that, but it's not correct. There are no plants which produce B12. In fact, no animals produce B12 either. Animals only have it because their foods have microbes, fungi, etc on them. It turns out that only certain microbes have ever been found to produce B12. Now if your grain happened to be contaminated with fungi or something, then it might have some B12. I think this was perhaps true before modern man decided to use pesticides on crops, killing off what is obviously important to us. Ironic, isn't it?

  • 3 weeks later...
Cynbd Contributor

My B12 was on the low side (in the low 200s) and I waited a year to see how my body would handle the changes after going gluten free. After a year, my B12 was even lower (below 200). My doctor told me to start taking GNCs sublingual B12. She said she had patients on injections with little improvement and after going on GNCs sublingual 1000 mcg their numbers finally improved.

I don't feel like I have had any symptoms from being B12 deficient, but I guess if I start to feel better, then hindsight might get me :)

roxie Contributor

I just recently started taking B12 (tablet form), and magnesium for my muscle pain. I'm feeling pretty good after only about a week. I can't remember for sure who suggested the magnesium, but THANKS!!!

mommida Enthusiast

Pernicious anemia is an auto-immune disease with conections to Celiac.

The gut lacks the intinsic factor, leads to iron defiency, and the lack of B12.

Recent studies have shown sublingual B12 supplements are as effective as B12 injections/shots.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.