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 Level Way Low ~scared

chgomom

Recommended Posts

chgomom Enthusiast
chgomom
Posted

I have been getting bone pain, muscle spasms and dizzy for a while whie on the gluten free diet...and the big D.

But in general felt ok.

I just got my latest D level back and it was 8. When he said it I thought he was urgently calling about a level of 80 and I was like thats ok..no big deal. He said NO 8, as in singular 8. I almost dropped the phone. He said this oculd be the reason for the pains, and the dizziness, and the big d issues.

I don't know guys, he's supposed to confer with someone on what to give me....but....the last doc I saw said 50000 units a week for 12 weeks. I am really scared.

You guys..help me out here :blink:

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

Celiac.com Sponsor (A8-M):


Mountain Mama Rookie
Mountain Mama
Posted

It will be ok. My dr told me recently my vit d level was non existant and has me on 1,250 IU's a day. I think lots of us have extreemly low vit d. I have had the diziness and bone pain etc too. I have to say it is starting to get better since I have been taking my vit d. Fortunately, our bodies are reseliant and able to correct the deficiancies with proper supplimintation as our gut heals!

happygirl Collaborator
happygirl
Posted

What is the range for the testing? What is "normal?"

chgomom Enthusiast
chgomom
Posted
  • Author

He said normal is 20 to 60

UNCHeel Rookie
UNCHeel
Posted

I've had a bunch of bloodwork since recently being diagnosed. May I ask which test is the one for Vit D...the CBC or something else?

chgomom Enthusiast
chgomom
Posted
  • Author

Oy...this is scary for me. :huh::(:unsure:

chgomom Enthusiast
chgomom
Posted
  • Author

Hey I am moving to Clayton, NC if Heel means what I think it means.

Anyway...vitamin D would be a specific lab, not grouped with the CBC

Your doctor would single out the vitamin levels.

Ask him specifically about any vitamin levels and ask what numbers they are so you can keep track of them.

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

Wow. I can relate to the symptoms you listed, but they went away after I began taking magnesium. So now I'm wondering. Since magnesium is supposed to help absorb other nutrients, did it work because it helped the vitamin D level, or can low magnesium cause essentially the same thing?

UNCHeel Rookie
UNCHeel
Posted

Oh very cool. I go to Dr Barrish at Wake Internal Medicine on Blue Ridge Rd in Raleigh if you need another doc. Please keep us posted.:)

UNCHeel Rookie
UNCHeel
Posted

Doe anyone take cod liver oil as a supplement? I found some orange flavored that didn't taste any worse than Nyquil but the nurse got grossed out...kinda funny. Anyway they told me to take 200mg of Vit d a day but I don't know ift hat's overkill with the cod liver oil which honestly I trust more.

Ursa Major Collaborator
Ursa Major
Posted

Normal vitamin D levels are between 50 and 150, not 20 to 60. Optimal is about 125 (despite what some doctors and labs tell you).

My vitamin D level was 24 in the fall of 2005. I've been supplementing with cod liver oil ever since (I use the Carlson brand, which is lemon flavoured and the best brand on the market), and when tested last, my level had gone up to 150. You don't want it to go past that, so I've been taking less now (I was taking two tablespoons a day before).

Not only will a lack of vitamin D (which isn't really a vitamin or a nutrient but a hormone precursor) cause all the aforementioned symptoms, but cancer, stunted growth in children, rickets (soft bones), osteoporosis (because calcium and magnesium need vitamin D to be absorbed) and a host of other problems.

I've read that nobody who lives farther north than the 30th parallel (or south, same thing) from the equator gets enough sunshine to make an adequate amount of vitamin D from September to May (or during our summer south of the equator). And the summer months can't make up for it without supplementation. Nearly everybody is vitamin D deficient, but especially dark skinned people.

UNCHeel Rookie
UNCHeel
Posted

Ursa M

Thanks so much for mentioning the Cod Liver Oil. Did you take supplements too or does that end up being way too much?

Ursa Major Collaborator
Ursa Major
Posted

I was taking a multivitamin after I could actually absorb it (after about six months on the gluten-free diet) which has some vitamin D, and calcium/magnesium with vitamin D as well. I still take those, too. But I was not taking specifically vitamin D supplements.

mouse Enthusiast
mouse
Posted

My rheumy told me I was just barely on the charts and put me on 50,000 units twice weekly for several weeks ( I don't remember how many weeks it was). When he retested me and I was in the normal range, he then put me on 1000 units every day, which I still take. And I live in Arizona, where sunshine is plentiful.

chgomom Enthusiast
chgomom
Posted
  • Author

I'm betting...I get that vitamin D horse pill in my and it should help with alot of these things going on.

CAN YOU BELEIVE...

postive blood work

Osteopenia and Porosis,

deficiencies in zinc, A, D and E

Teeth issues - soft enamel

and DH

6 months gluten free....and the blood work is back to normal, and all my levels that indicated inflamation are normal but all I have is this lingering Zinc and D issue.

That to me says, supplement me and see how that works.

Why the biopsy still.....why do they NEED that.

And...wow...if my D ,level is 8 they better get me something fast,,,,he says he needs to see how much he can put me on.....

ugggggggghhhhhhhhhh

chgomom Enthusiast
chgomom
Posted
  • Author

Sooo this doc I decided to go to...because it was closer....says...He doesn't know what to give me.

I called my original gastro docs and said Please let me come back, this guy doesn't know what hes dealing with.

I want to start the script you gave me the 50,000 IU a week. for 8 weeks.

Ugggghhhh I have the pills here now...don't know if I should take the one

its once a week....for 8 weeks...

Janeti Apprentice
Janeti
Posted

when i was at my sickest, my vit d level was the same way. the dr had given me massive doses of vit d for 2 months. the first month i took it, but the second month after being gluten free for several weeks, i decided to start taking viactiv. but i also had the bone aches, muscle spasms, and dizziness. you are right, it is scary... hang in there.

I have been getting bone pain, muscle spasms and dizzy for a while whie on the gluten free diet...and the big D.

But in general felt ok.

I just got my latest D level back and it was 8. When he said it I thought he was urgently calling about a level of 80 and I was like thats ok..no big deal. He said NO 8, as in singular 8. I almost dropped the phone. He said this oculd be the reason for the pains, and the dizziness, and the big d issues.

I don't know guys, he's supposed to confer with someone on what to give me....but....the last doc I saw said 50000 units a week for 12 weeks. I am really scared.

You guys..help me out here :blink:

chgomom Enthusiast
chgomom
Posted
  • Author

It's official, 50,000 IU once a week for 12 weeks.

Eeehhhh, that scares me....

Anybody have experience?

loraleena Contributor
loraleena
Posted

What is normal is not the same as optimal. Optimal is 45-50 ng/ml or 115-128/nmol/l. Not sure why are two different ways to measure.

loraleena Contributor
loraleena
Posted

The test you should get is 25 (OH) D.

chgomom Enthusiast
chgomom
Posted
  • Author

Well they said mine is barely there at 7.9 something, they are calling it 8 and said I HAVE to rigidly do 50,000 IU a week for 12 weeks...

Anybody ever do this??

Jestgar Rising Star
Jestgar
Posted

I've been taking almost 5000 units a day for about 6 weeks. My muscle cramps have almost gone and I've not experienced any adverse events.

You could always get rechecked after a few weeks if your nervous.

chgomom Enthusiast
chgomom
Posted
  • Author

Jestgar....good idea....

Jestgar Rising Star
Jestgar
Posted

Hey! Make those doctors work for you!

chgomom Enthusiast
chgomom
Posted
  • Author

Yeah I'm paying for it anyway right??

I NEVER CONNECTED THE Muscle cramping to the D.....

I get the alot too....but I just thought it was being tired...

Archived

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

Go to topic listing

  • 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. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748
    Deb baker
    Newest Member
    Deb baker
    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

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.