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

Recently diagnosed - Question about vitamins


rt-116

Recommended Posts

rt-116 Explorer

Just wondering what vitamins people were advised to take after diagnosis? I am anemic so think I need to improve my iron, presuming low on b12 and D but am yet to have full vitamin checks. Obviously will have these checked soon. 

Of course will vary for all, but just curious about the advice given to others prior to seeing my GP again. 

If you do take vitamins, when is the best time to take them for the best absoption benefits etc? 

Thank you for any help! 


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



Celiac.com Sponsor (A8-M):



Fenrir Community Regular

I would wait and see what you're deficient in. Many Celiacs are deficient in Vitamin D and B12 but each person is different. 

cyclinglady Grand Master

Do not just take a vitamin because you are anemic.  Your doctor should be able to tell you which kind of anemia you have (there are many types).  For example, I was very anemic. My doctors knew that I had a genetic anemia called Thalassemia which there is nothing to be done except for blood transfusions when medically necessary.  It masked my iron-deficiency anemia for years due to celiac disease.  You can have more than one type of anemia!  

Do not let doctors compartmentalism you!  “Oh, she has Thalassemia, that is why her hemoglobin is low.”  

Get tested.  Although I was low in iron (ferritin test), I was never low in B-12.  

If your gut is damaged, it is hard to absorb anything.  So, if you are severely b-12 deficient, you might need shots to by-pass your gut until you heal.  If you remain on a strict gluten-free diet, you might never need to consume vitamins ever unless you eat an unhealthy diet full of sugar and junk food which is most Americans.....?

Take this to your doctor:

https://celiacdiseasecenter.columbia.edu/celiac-disease/follow-up/

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

Fenrir Community Regular

@cyclinglady  is correct. The term "anemia" is just a general medical term meaning there something wrong with your red blood cells. It could be from a nutrient deficiency, could be genetic, could be from bleeding, cancer, or exposure to toxins. So if you don't know why you're anemic be sure the Dr. figures it out. 

Some celiacs are anemic from poor absorption of nutrients. 

rt-116 Explorer
12 hours ago, cyclinglady said:

Do not just take a vitamin because you are anemic.  Your doctor should be able to tell you which kind of anemia you have (there are many types).  For example, I was very anemic. My doctors knew that I had a genetic anemia called Thalassemia which there is nothing to be done except for blood transfusions when medically necessary.  It masked my iron-deficiency anemia for years due to celiac disease.  You can have more than one type of anemia!  

Do not let doctors compartmentalism you!  “Oh, she has Thalassemia, that is why her hemoglobin is low.”  

Get tested.  Although I was low in iron (ferritin test), I was never low in B-12.  

If your gut is damaged, it is hard to absorb anything.  So, if you are severely b-12 deficient, you might need shots to by-pass your gut until you heal.  If you remain on a strict gluten-free diet, you might never need to consume vitamins ever unless you eat an unhealthy diet full of sugar and junk food which is most Americans.....?

Take this to your doctor:

https://celiacdiseasecenter.columbia.edu/celiac-disease/follow-up/

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

Thank you so much for your thoughts. Its been such an overwhelming couple of days and this has been very helpful! 

18 hours ago, Fenrir said:

I would wait and see what you're deficient in. Many Celiacs are deficient in Vitamin D and B12 but each person is different. 

Thanks! 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.