Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Vitamin D Deficiency--Poll


PainfulSpaghetti

Recommended Posts

PainfulSpaghetti Newbie

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?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



tictax707 Apprentice

Me too. I had a vit D deficiency that was spotted 2 years ago. I was tested again just recently and it revealed that I was just below normal. I was all excited and happy but the screener just hollered at me for being low - she didn't know my history. Hopefully next time I will be in the normal range. :)

Link to comment
Share on other sites
PainfulSpaghetti Newbie

I would be SO excited at being just below normal levels too! Thanks for your response!

Link to comment
Share on other sites
mushroom Proficient

I have gone from the low 20's all the way up to 49 :)

Link to comment
Share on other sites
PainfulSpaghetti Newbie

Good Job Mushroom!! That's awesome! I found this article online: Open Original Shared Link

Wow! Does the defiency make your legs itchy and then hurt?

Link to comment
Share on other sites
kellynolan82 Explorer

I'm Vitamin D deficient too! Unfortunately I don't spend too much time in the sun but I also don't know about how safe getting Vitamin D capsules is (especially if I would overdose - which apparently is easy to do)... :o

Link to comment
Share on other sites
PainfulSpaghetti Newbie

OOH! And this one, too!

Open Original Shared Link

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



PainfulSpaghetti Newbie

The Doctor had me on 50,000 IU a week, and then I was supposed to take 1,000 a day on top of that. That seemed excessive to me so I backed off of the 50,000 a week, and now the symptoms are returning. A doctor has to monitor it, and unfortunately I don't have health insurance. So, I take 2,000 a day. Hopefully it will work itself out!

Link to comment
Share on other sites
StephanieL Enthusiast

I know absorption is an issue with Celiac BUT MOST people are low to very low in Vit. D.

Link to comment
Share on other sites
quincy Contributor

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?

My first reading was 16, then after a few months on 50,000 IU's and a full summer of sun it dropped to 11 !!! So my doctor put me on 50,000 IU's twice a week for 3 months

and it finally, after a year of trying, went to 52. It took a year of healing and persistence with the supplement to get my numbers up. and I have osteopenia. I go to the Celiac Disease Center at Columbia University by the way so my doc is a celiac specialist....

take your vit D level very seriously, and its best to take your supplement w some type of healthy fat, either a salad with some olive oil or a almond butter etc.

Link to comment
Share on other sites
Jenniferxgfx Contributor

Mine is extremely low. Pre-gluten-free, I used OTC supplements but my levels went down... Only gluten-free 6weeks, and reacting to my cc'd OTC D, and my doc doesn't want to give rx 50,000iu's. So frustrating, because I did notice it helped my bone pain before I had to stop taking it. I have more OTC on order now, but still! Bleh.

Link to comment
Share on other sites
Bubba's Mom Enthusiast

Mine was high at 66, but I've been taking a suppliment for a couple of years.

Link to comment
Share on other sites
tarnalberry Community Regular

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, but I've been gluten-free for ages, and I'm fairly certain it wasn't that at all.

I live in the pacific northwest and most of us (if not significantly supplementing) are either deficient or borderline.

Link to comment
Share on other sites
quincy Contributor

The Doctor had me on 50,000 IU a week, and then I was supposed to take 1,000 a day on top of that. That seemed excessive to me so I backed off of the 50,000 a week, and now the symptoms are returning. A doctor has to monitor it, and unfortunately I don't have health insurance. So, I take 2,000 a day. Hopefully it will work itself out!

when I was first diagnosed and found out my Vit D was 16, I went to an Endocrinologist and she wanted to put me on 100,000 IU's a week immediately.

well I too balked at those amounts and went against her instructions and just did the 50,000 once a week. well as I said earlier, by the end of the summer

I dropped to 11. After several more months I climed to 18 and then to 23. Finally, my celiac doctor up'd me to 100k a week so I realized that the Endocrinologist was correct all along.

The bone pain subsided with each time I took the dose. Some bone pain has returned to my right hip so I can tell I need to be consistent after dropping off from taking my 2,000 IU's a day now... so be vigilant and don't second guess your doctor with dosages with very low Vit D.

also, I don't know what doctor would not prescribe the vit D if your levels are very low. taking an OTC supp of 2000 a day with very low levels will not get you to where you need to be and in the meantime your bones could be losing density.... not to be an alarmist, but after years of lifting weights, to find out I had osteopenia, I don't mess with what the doctor tells me, IMHO

Link to comment
Share on other sites
Roda Rising Star

My vitamin D deficiency was detected Jan. 2009 and it was at 17. I have been taking 50,000 iu weekly since. My last level was 60.

Link to comment
Share on other sites
quincy Contributor

My vitamin D deficiency was detected Jan. 2009 and it was at 17. I have been taking 50,000 iu weekly since. My last level was 60.

thats great progress Roda, are you on maintenance now? if so, what are you taking daily?

Link to comment
Share on other sites
viviendoparajesus Apprentice

i too had vit d deficiency.

Link to comment
Share on other sites
GottaSki Mentor

Mine was 16 when diagnosed two years ago...it improved to 38 at a year gluten free with supplementation - thanks for the reminder that it's time to get it checked again :)

Link to comment
Share on other sites
mushroom Proficient

If it is just D that is low, that one can consider latitude or not enough time in the sun. If other things are low, like B12, folate, A, iron/ferritin, etc., that it is probably lack of absorption.

Link to comment
Share on other sites
PainfulSpaghetti Newbie

Thank you all so much for your replies. I will definitely go back in and have it checked again. Good luck to all!

Link to comment
Share on other sites
Roda Rising Star

thats great progress Roda, are you on maintenance now? if so, what are you taking daily?

I'm still taking the prescription vitamin D 50,000 iu/weekly. I was told to stay on it indefinately. I get my vitamin D levels checked about every 4-6 months.

Edited due to typo

Link to comment
Share on other sites
Schatz Apprentice

I haven't gotten my test result back yet.

Link to comment
Share on other sites
pondy Contributor

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?

Just had mine re-tested last week. Doctor said it's up to "40" - 40 what I don't know. All I know is that 6 months ago it was something like a 15.

I take 2000 IU per day.

Link to comment
Share on other sites
zentex Newbie

During my last physical (a year prior to going gluten-free), my doctor said my levels were low. How low, I don't know because I didn't think to ask. He told to me to start taking 2000IU's a day and get re-checked in a year.

That was in April of 2010. I haven't been back, nor have I been very good about remembering to take the stuff. I don't suffer from any symptoms that I know of, but I've never looked them up either.

It's funny/strange to me how many of these posts I read that mention something that I have or have gone through. This gluten intolerance had a lot of rammifications that I NEVER expected.

Link to comment
Share on other sites
lcarter Contributor

I also tested Vit D deficient, so my doctor put me on an extra 1 mcg of Vit 3 daily. But, now am only borderline in the normal range.

We live in Panama a good part of the year which is much closer to the equator than the US, so the sun is much more intense. Unfortunately, because of skin issues, I have to wear total coverage sunscreen + wear a sun hat or carry an umbrella whenever in the direct sun. Even with all this protection, I have a tan line - so you would think that I would be getting enough vit D from sunshine.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Trying to read my lab results

    2. - Aussienae replied to Aussienae's topic in Coping with Celiac Disease
      65

      Constant low back, abdominal and pelvic pain!

    3. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    4. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    5. - mishyj replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,221
    • Most Online (within 30 mins)
      7,748

    lortaine
    Newest Member
    lortaine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
    • Aussienae
      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
×
×
  • Create New...