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

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
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    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

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.