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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.