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

Still Aneamic

covsooze

Recommended Posts

covsooze Enthusiast
covsooze
Posted

I've been on iron for a year now, and have been gluten-free for 6 months. My heamaglobin did get back up to about 12 but is back down to 10. My iron stores are fine so the dr is checking serum iron/ trans ferrin (whatever they are!). My B12 is 370 and the GP said that's normal. I couldn't find the thread here which talks about the new recommended B12 level, despite doing a google search. Can someone help me out with that one please? I've tried googling the other tests he's done, but it's like a foreign language to me! What could he be looking for?

BTW, I'm also hypothyroid.

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

Celiac.com Sponsor (A8-M):


marciab Enthusiast
marciab
Posted

My doc told me that if B12 is under 400 then you can have nuerological problems, like numbness and tingling. She also told me though that she wants mine to be around 500. I had numbness in my hands and had almost passed out twice prior to that visit. :huh:

Mine was 280.

Are you taking B12 ? Sublingual is better absorbed than pills. I give myself injections twice a month now. Yeow !!

I'm interested to see what others have to say about the iron / hemoglobin levels. Mine is off too, but I agree, the explanations on the web are greek. :blink:

covsooze Enthusiast
covsooze
Posted
  • Author

can low hemoglobin be caused by low B12?

flagbabyds Collaborator
flagbabyds
Posted

my ferretin is WAY down, like 5 where normal is 10ish -20 i think, not quite sure...but now i am getting iron infusions at the hospital when mine gets down........................

mommida Enthusiast
mommida
Posted

You need to have proper levels of B12 to be able to absorb iron. I would also check your magnesium and calcium levels.

L.

Nancym Enthusiast
Nancym
Posted

This is probably a long shot but I just read an article about certain fish parasites (that can reside in humans) that can cause anemia and B12 deficiency.

Open Original Shared Link

queenofhearts Explorer
queenofhearts
Posted

I'm curious about the sublingual B-12-- is this an otc thing or do you need a prescription? I don't remember seeing it on the vitamin shelf but I may be looking in the wrong place. Is it a pill? Drops?

I have a feeling I may be deficient, but not getting much of a change from the pills I take.

Leah

You need to have proper levels of B12 to be able to absorb iron. I would also check your magnesium and calcium levels.

L.

Was it you who recommended magnesium a few weeks ago? I decided to try it & I think I've detected more stamina. I was always afraid to take it before because of the D issues, but now that's so much better that I dared to experiment. So far no digestive problems!!!

Leah

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748
    CE1963
    Newest Member
    CE1963
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.