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?

kam00096

By kam00096
in Coping with Celiac Disease

Recommended Posts

kam00096 Contributor
kam00096
Posted

After I had positive blood tests for celiac at the start of the year the docs also discovered I had extremely low vitamin D and high parathyroid. At the time I was having major issues with dizziness and leg pain. They put me on high dose vitamin D but didn't give me a maintainance dose afterwards and within weeks of the course finishing it had dropped right back down. After a second high dose my bloods were all normal and they told me just to take a one a day over the counter supplement. Fast forward 4 months and I'm back to having severe dizziness and leg pain. I'm desperately trying to figure out what's causing it and am wondering if the tiny dose of vitamin d I'm now taking might not be enough. Docs say I won't even have my levels tested again for a year since they were normal the last time and I'm pretty strictly gluten free so in theory I should be absorbing it better now but maybe it's not been long enough for my gut to heal yet? I've been at the doctors non stop the last month or so with other non-related symptoms and I really don't want to go back with this but the dizziness is getting to the debilitating stage again. 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi Kam,

I have the same issue as far as vitamin D goes.  Low for years.  I take 5000 IUs daily now.  You can also try eating oily fish like mackeral, sardines, salmon and tuna.  They have some vitamin D in them.

If your dizziness is that bad, it is worth a trip to the doctor.  Have you tried taking B vitamins?

captaincrab55 Collaborator
captaincrab55
Posted

Kam,    Been there.      IMO,   You need a new MD, one that knows how to treat those with Celiac Disease.       I need 5000 ius of D3 daily this time of the year(late fall till early spring).

Good Luck.

lacey Contributor
lacey
Posted

I am also low in vitamin d...after researching it a bit more I realized not only how important it truly is, but also how having an autoimmune condition can impact how you absorb it. I have been taking liquid vitamin d drops under my tongue. Purchased on amazon if you are interested. I also read how tanning beds are a great way to get in your daily fill. I don't have the time/finances to go to a salon that often but it's something to keep in mind...after all it's the closest thing to the real deal ...though nothing can beat sunshine. I haven't tried this either but read that vitamin d should always be taken with magesium...apparently it helps you absorb it more easily...? Good luck to you. Be well!

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

Hello I had vitamin D deficiency years back and maintain my levels by taking a daily D3 supplement. I suspect I was vitamin D deficient before I was tested. My most recent test in July told me my levels are good and to maintain the dosage I currently take.

Your Dr. said take one a day you didn't share what strength/IU they suggested as your maintenance dose. If you are concerned it is not enough you can discuss the issue with the Dr. There is a range based on health and your levels for an adult anywhere from 600 IU up to 10,000 IU daily based on the person.The upper level limit for adults is 10,000 IU a day , this means do not go above 10,000 IU a day.

Here is a link that you may find helpful to read and useful to open a dialog with the current Dr. or a future one. Open Original Shared Link

Certain health issues like Celiac etc. may require a higher daily maintenance dose.  A liquid form maybe needed in some people especially if they have absorption issues. 

I hope this information is helpful in opening a dialogue with your doctor and advocating for yourself.  I have sat in lectures presented by vitamin D experts and researchers taking copious notes given my science background and past experience in the supplement industry as well as a former vitamin D deficient person. So while your Dr. has your test results you can read books and research articles more in depth to open that dialogue with your Dr. to address your concerns that you are not obtaining enough. If the Dr. does not want to be collaborative with you on this  you may have to take the other posters advice and find one who is more approachable and consultative. It is a frustrating experience that many of us have had. I wish you luck.

cyclinglady Grand Master
cyclinglady
Posted
On November 24, 2016 at 8:05 PM, lacey said:

I am also low in vitamin d...after researching it a bit more I realized not only how important it truly is, but also how having an autoimmune condition can impact how you absorb it. I have been taking liquid vitamin d drops under my tongue. Purchased on amazon if you are interested. I also read how tanning beds are a great way to get in your daily fill. I don't have the time/finances to go to a salon that often but it's something to keep in mind...after all it's the closest thing to the real deal ...though nothing can beat sunshine. I haven't tried this either but read that vitamin d should always be taken with magesium...apparently it helps you absorb it more easily...? Good luck to you. Be well!

I have watched one of my best friends die within six months of her Melanoma diagnosis.  She left behind a husband and two young children.    Now, a family member has been diagnosed with Melanoma Cancer.  Back in my day, there was no sunscreen.  No suggestions of covering up.  Please use caution when exposing your skin to tanning beds.  Read comments from those teens and 20 years now dealing with it on Melanoma websites.  It is more likely safer to consume Vitamin D and have a small amount of sun daily.  

BTW, i am not deficient (and never have been) with Vitamin D.  I do live in Sunny California though.    The take away -- not all celiacs need Vitamin D supplementation.  Have your doctors check your level first.  

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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,442
    • Most Online (within 30 mins)
      7,748
    Nony
    Newest Member
    Nony
    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

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like 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.