Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Hooked On B-vitamins?


Miriam3

Recommended Posts

Miriam3 Rookie

What do you all do about supplements while you're recovering at the start of your gluten-free diet?

I've been taking a B-complex supplement (B-1, B-2, Niacin, B-6, Folic Acid, B-12, Biotin and Pantothenic Acid) for almost a year now. I've only been Gluten-free Casein-free for 2 months. I was taking it before I got diagnosed because I was feeling tired, stressed and losing exercise endurance. It was a suggestion from a coach I know.

I've felt a little better since starting it, but nothing dramatic. Then I found out about the celiac and the level of malabsorption. And no wonder I needed an extra kick of vitamins since my gut wasn't helping me. But should I really keep taking these? My doctor hates these questions because he doesn't like to test or treat people unless they seem sick enough to him. I guess I don't qualify anymore since I seem to be on the mend. I got him to test me for B-12 and Folic Acid, and he says my levels are fine.

Problem is, I tried to stop taking them and it makes me feel like crap. If I forget to take them in the morning, I know by afternoon because my mood drops, I start feeling melancholy or anxious and I just don't have much energy. A couple of hours after taking them, I seem to recover some. This is not in my head, it happens when I totally don't expect or believe in any magical effect of B-vitamins!!

Doc is pretty much done with vitamin tests-- should I find some nutritionist or alternative medicine doc and try to get more tests? Or is there a particular amount of time anyone would recommend taking them while my stomach heals? Any suggestions or experience appreciated!!!


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Keep taking them! Why stop a good thing. Doctors are not always right. Some doctors do not thing much of vitamins, but that doesn't mean vitamins are not needed. Celiacs especially need extra vitamins. I just had this discussion with my PCP on Wednesday night. I take probably a lot more B12 than you do and he agrees with many of his associates--they feel that taking additional B12 only makes a person have "rich urine". He says there is no harm in taking extra B12 because your body can't store it---I will add here, be very careful with B6, you can take too much of it. If you are taking a multiple B complex, then I am sure you are safe though. I want to try B12 shots and my doc is agreeable, if I want to try. He doesn't necessarily agree that it helps, yet he has 50-70 patients who come in weekly for B12 shots and they swear by them. I feel that many people know something! My doc thinks I look very healthy, says my heart is strong, my lungs sound good, yet I asked him to explain my unexplainable neuropathy, my fatigue, my low body temp, severe exhaustion, headaches--how I can be so healthy on the very limited foods I can now eat? He agrees, there is something going on. They tell me it's not thyroid, it's not B12 deficiency because my B12 level is too good (well, of course it's good, I take 2400 mcg daily for over 2 yrs now and finally I have good reflexes again, but that's not good enough, I want more back)---they keep telling me what it's not, and they keep saying, "Are you sure you are celiac?" Well, I don't need them to tell me what I already know, I need them to tell me what we do not know!

Take the vitamins--you feel good now, don't stop that which is working!

ravenwoodglass Mentor

As long as those vitamins are for sure gluten free you definately are not having drug withdrawl symptoms from them. I agree with the previous poster that you need to stay on a good supplement. I would even go so far as to suggest that you get a seperate sublingual B12, until we have healed we do not absorb and utilize this vitamin in our guts like most people do. You will get the most benefit in the B12 area from a sublingual. Also keep in mind that the levels for 'normal' for vitamins is very wide. Some doctors will consider the levels normal even if you are just a couple of points into the normal range. Especially with B12 that is often too low and also if you are taking supplements they can throw those ranges into a false positive. Be very careful with Iron supplements though, they can be dangerous if you are taking to much and that level should be checked regularly IMHO if you are supplementing in higher levels.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,604
    • Most Online (within 30 mins)
      7,748

    Ellie D
    Newest Member
    Ellie D
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • kopiq
      also my hands are always cold, freezing cold in the winter and even cold during hot summer days. its like i have a shield. i feel warm but its not penetrating inside, my teeth chatter as well and my left index finger goes dead white when im super hungry. all dr tests come back fine. im so hopeless.
    • kopiq
      thank you, ive asked my dr to test for vitamin deficiency and shes only said vitamin d (very low 26) and b12, she says all other vitamins are not included in her blood tests only the major ones, C, D, E, B12 etc. Ive been following the aip diet now and im going to stay on it very strict to see how it goes. im eating tons of food, romaine salads, mango, peaches, pears, cucumber, celery, zuccnini, sweet potator, plantains, ground turkey and beef and chicken.  i eat about 4 plate filling meals a day with two to three good size snacks a day including about 3 or 4 bananas. im still not absorbing nutrients, if i eat any sort of food with fat, I.e ground beef or fatty pork the taste of fat lingers in my mouth for 2-3 hours sometimes longer, if i bask in sun for vitamin d i feel great but then lethargic and feel strange for a day or two later, like im still absorbing it all in. even regular sweet foods like fruit the sweetness stays in mouth for hours. ive had blood work done for gall bladder, thryroid, pancreas, liver, kindey dr says they are all fine. i dont know what other tests i can do?   ive attached two pictures of the rash that broke out on my legs, feet and small one near wrist bone bright red was before treatment, second scabby one is during treatment and healing.  https://freeimage.host/i/FrI3KZb https://freeimage.host/i/FrI3Fwu  
    • Scott Adams
      The Trader Joe's GF hamburger buns are the best!
    • StuartJ
      Just ate some for lunch!  A really superb alternative to gluten-free bread and burger buns that all have the taste and consistency of compacted sawdust.  I bought two packs and now I'm down to one remaining muffin so need to get some more; the only thing is it's their own brand - they don't do mail or on line ordering and the nearest TJ's is in Charlottesville (a real nightmare to drive around) an hour away from me over the mountain.  😒
    • somethinglikeolivia
      When I underwent a scope three years ago, the GI told me I was negative for celiac because there was no intestinal damage (in spite of multiple strong positive labs). I went back to look at my biopsy report out of curiosity, and found this note: “Localized mild nodular mucosa was found in the duodenal bulb. Duodenum otherwise normal.” The pathology from this scope was negative. Does anyone have any insight into mild modular mucosa and what that could indicate or be a precursor to? I’ve read it can be a sign of celiac or other gut issues like h. Pylori, etc.  Thanks in advance! 
×
×
  • Create New...