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

Vitamin D Deficiency--Poll


PainfulSpaghetti

Recommended Posts

cahill Collaborator

I take 50,000 IU weekly, + 2000 daily and I am out side a minimum of 45 min a day and my vitamin D is FINALLY up to 28


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



Celiac.com Sponsor (A8-M):



color-me-confused Explorer

Tested at 15, 8 weeks of 50,000 weekly and 2000 daily, along with only sunscreening my face, got me to 27. Now on 1000 daily.

Reba32 Rookie

I had all my vitimin and mineral levels tested after my Celiac dx, and everything was deficient. Everything, not just D (though that one seems to be the fashionable one to test most commonly these days, there are several other very important vits and minerals that should be tested).

Even with mega-doses of supplements, while your villi are healing, you'll probably still be low or deficient because of continuing malabsorption issues. I've read it can take as long as 5 years to fully heal, IF you don't get glutened.

I've been gluten-free since Dec. 2009, and I go for my physical next month, so will have all my vitimin and mineral levels tested. I'm hoping they're up a bit from last time, but I'm not expecting anything miraculous just yet. ;)

tennisman Contributor

Mine is low , it started to go up than stopped going up . I take sometimes quadruple my dose and it does nothing :S

akceliac Newbie

I too was dx with D deficiency, but only after 11 years of bone pain and other side effects due to other serious vitamin and mineral deficiencies which were not even considered by the local medical community until I presented with life threatening symptoms.

As a last ditch effort to "get me out of the office", the doctor finally tested my Vit D levels. The total D2 & D3 was 12. At first she said to take 400 IU daily. After consulting with her colleagues she wrote a prescription for oral D2 at 16,000 IU daily for three months.

I couldn't afford the over $100/week cost of the Rx, so I researched the internet for Vit D deficiencies and found that D3 is the most effective form to take and I started taking 10,000 IU daily. It's very inexpensive to purchase OTC. My numbers finally increased to 75. The Rheumatologist wants to see 80.

Most doctors assume that I'm going to overdose on Vit D3 because I take larger than AMA recommended doses; but it's been 4 years since I started taking the Vit D3 supplementation and my numbers are still between 65-75 and my bones are no longer hurting.

PainfulSpaghetti Newbie

Again, Thank you all so much for your replies. It's always heartbreaking to learn that so many of us struggle, but at least we aren't alone!

thleensd Enthusiast

Yup. Was 18 and falling (no one told me until an observant doc looked back at the numbers months later), went on 50K for 6 weeks-brought to 59, supplemented at 2k/day, dropped to 46 (still normal, but didn't like the direction), now I take 5k multiple times per week (3-6) and I seem to be holding pretty steady: 56. Consider looking into taking magnesium with the D.

Now if I could only get my iron stable...


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



Celiac.com Sponsor (A8-M):



PainfulSpaghetti Newbie

Now if I could only get my iron stable...

Nor-TX Enthusiast

My Vit D stays in the mid 20s even though I take 5,000 a day and I get 200 mg of Venofer every 5 weeks with my Remicade infusion. Iron levels are improving slowly...

AVR1962 Collaborator

I am curious as to how many of us have Vitamin D defiencies. Mine was severe, and I struggle to raise my count, and have been all year. Anyone else?

Yes, caused me all kinds of trouble.

Sarah Alli Apprentice

I was tested for vitamin D deficiency when all this first started, it was quite low. But everyone that I know that's been tested was low- I think it's baseline, especially in Alaska where I was living at the time.

I was retested about two months after gluten-free, now within normal limits! Still on the low end, but it's a victory for sure. Just need to get my iron up, now.

Lori2 Contributor

It has taken me four years to get my vitamin D levels up to mid-range taking 5,000 units a day plus an extra 50,000 weekly. I've just been gluten free since January.

mushroom Proficient

I just gave hub a wakeup kick. He has osteopenia and has (supposedly) been taking calcium and magnesium along with 50,000 units D and I made him get retested for D - his level was only 30 :o He said well that was normal. I told him if he were one point lower he would be insufficient, that he needs LOTS of D, like 70 or 80. He was all, like, HUH??? Exasperation!!!!!

Cattknap Rookie

Vitamin D, Iron and thyroid - all very low because of celiac.....but all things that will improve or become normal as I remain gluten free,

watata Apprentice

I was diagnosed by my cardiologist in March. My level was 13. Put on 50000 a week , after 4 months went up to 26 , moved up to 50000 every 5 days and now at 48. Diagnosed with Celiac 5 days ago. Vit B12 is low edge of normal, magnesium ok, they didn't test folic acid and iron is right at 12. was 8 last august. Crazy, but will keep an eye on it all.

JoshB Apprentice

38 which counts as sufficient, they say. I drink a good bit of milk, try to get some sun and take some supplements (just over the counter).

Worth noting that Wikipedia says 30~50 is the desired range, and that anything over 50 doesn't provide increased benefit and is in fact a little risky.

domesticactivist Collaborator

We take fermented cod liver oil from green pastures. It is the most nutitional available source.

T.H. Community Regular

My vitamin D levels were low and continued dropping for a year when I was on the gluten-free diet, even though I am outside in the sun quite a bit on a daily basis. I reacted to all the vitamin D supplements, as well as all food that is vitamin D supplemented, so I was pretty worried where this was going to lead.

Then I got rid of as much gluten cc as I possibly could, even that which is allowed in gluten-free products (my only processed food right now is oil, salt, and one whole grain), and after a year of that, my vitamin D levels are up to high-normal levels. Very happy that this is now the case, phew!

jemms Apprentice

mine was very low and I now take liquid Vitamin D...no wonder I was feeling so depressed and overall sluggish...

  • 2 weeks later...
anabananakins Explorer

I was diagnosed with Vit D deficiency a year ago July... 22 with a reference range of 51-140. I used to feel like death warmed up. Retested in July and I was 107 - woot! I think I take 3000 a day (it's three pills anyway).

I live in Sydney, Australia too - you'd think I'd be getting enough sunshine. I don't go and lie in the sun, but just walking to the bus stop in the morning, and walking up the street a few times a week at lunch time gets me enough sun to tan my face arms and feet. Nope. Craziness. I don't know how people going through long dark winters have any vit D at all.

Archived

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

  • 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. - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Positive biopsy

    2. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

    3. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

    4. - Jordan Carlson posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fruits & Veggies

    5. - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

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

    • Total Members
      132,997
    • Most Online (within 30 mins)
      7,748

    SpoonedMango
    Newest Member
    SpoonedMango
    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

    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
×
×
  • 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.