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


JerryK

Recommended Posts

JerryK Community Regular

See his email below: How can this be so? How can Dr's miss this. How many people out there with Fibro have low vitamin D and no one bothered to check? Anyone out there feel like crap...hurt all over and no one bothered to check your vitamin D levels??

-------------

I hurt ALL over and it took until noon or longer to feel a little better. I was taking 6 tylenol a day and advil too. I don


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I am so glad to hear that he is doing better.

Yea they have never to my knowledge tested my Vit D levels. I do know that since I started taking it a month ago my moods have been better and a toe that I broke back in Sept that just wasn't healing is finally pretty much pain free.

The D3 along with calcium and magnesium seem to have really made a difference. Maybe it will help my bone density too...I hope.

ang1e0251 Contributor

That's pretty interesting. How much D do you take for that kind of relief?

DeerGirl Apprentice

See his email below: How can this be so? How can Dr's miss this. How many people out there with Fibro have low vitamin D and no one bothered to check? Anyone out there feel like crap...hurt all over and no one bothered to check your vitamin D levels??

-------------

They miss it b/c traditionally not tested for unless they suspect rickets, house-bound people, or others who don't go outside. It is the rare doctor who thinks to check for it for any reason, in my experience. That said, glad your brother got tested and he is feeling better. I know how miserable being Vit D deficient is, as I too had problems with.

DeerGirl Apprentice

Vit D & calcium will help with bone density.

Supplemental levels are guided by what your starting levels are. My doctor had me take a prescription of D3 when my very low levels were first found. Since stabilizing and going gluten-free, I am now on a lower maintenance dose that is available OTC.

tarnalberry Community Regular

I've had four different doctors test me for it, without asking, with the symptoms of fatigue and joint/muscle pains. (Gyn, two different GPs, and my rheumatologist.) Maybe it's because I'm young(ish), maybe it's because I've lived in the PacNorthwest for the past three and a half years. But it's never been an issue.

DeerGirl Apprentice
I've had four different doctors test me for it, without asking, with the symptoms of fatigue and joint/muscle pains. (Gyn, two different GPs, and my rheumatologist.) Maybe it's because I'm young(ish), maybe it's because I've lived in the PacNorthwest for the past three and a half years. But it's never been an issue.

Tarnalberry- that's excellent! I was tested only by 2 docs, and one was to check for hypo/hyperparathyroidism (or to rule it out) and the other was follow-ups with celiac specialists. I know more awareness is growing about the role Vit D has in many diseases and physical symptoms, so hopefully more people will get as comprehensive testing as you did.


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



Celiac.com Sponsor (A8-M):



I hate gluten Apprentice

OMGolly. I know what that person is feeling. I begged my doctor to run the test for vit deficiencies. He rolled his eyes and did it to please me while saying " Only gereatric people and menopause people have vit deficiency" Well when the results came back I needed b12 injections and a D perscription. I felt good after my diet change, better after my b12 and ready to take on the world with my D. I know I have wrote my story a few times but it has been a week and I can not beleive how well I feel and I can say it has been at least 6 years since feeling this way. I can very much relate to him. I hope he is on the road to feeling better.

mushroom Proficient

I got tested because I asked for it, was told that my low, low normal was okay, then insisted on prescription, then was told by my rheumatologist that I needed to be taking more than once a month, that I "needed to fill up the tank" first before dropping back to monthly, otherwise I was just sustaining my low level.

GlutenGuy36 Contributor
See his email below: How can this be so? How can Dr's miss this. How many people out there with Fibro have low vitamin D and no one bothered to check? Anyone out there feel like crap...hurt all over and no one bothered to check your vitamin D levels??

-------------

I hurt ALL over and it took until noon or longer to feel a little better. I was taking 6 tylenol a day and advil too. I don

holiday16 Enthusiast

I was diagnosed 2 or 3 years ago with borderline low D. I think it was 21. The test has been changed to where that is not considered normal anymore. I just retested last month and it's back down to 35 which is considered normal, but I was having trouble sleeping and pain again. Playing around with it I found I feel best at 80, but without supplementing my levels plummet no matter how much time I spend in the sun. The NP I talked w/ thinks for some reason I can't absorb it. All other vitamin levels are great. It's just the D. Tell your brother to make sure and keep checking it even after it's back up!

Look up Fibro and D and you'll see that there are many articles questioning if some people that are diagnosed really just have low D. I've also read that people w/ Fibro tend to have low D and they don't know why. My FM is totally under control and the pain I was getting w/ low D was different. Over time you begin to recognize the symptoms. One big one for me is if I cough and I feel a pop or cracking feeling in my chest. NP says that probably the start of osteomalacia. Goes away as my D levels go up.

BTW, even at a level of 21 I could barely get out of bed and felt half dead. Can't imagine how bad your brother must have felt!

Paulette

JerryK Community Regular
BTW, even at a level of 21 I could barely get out of bed and felt half dead. Can't imagine how bad your brother must have felt!

Paulette

They said at his level, they had never seen anyone walking around...(less than 4)

mbrookes Community Regular

I was diagnosed Jan of 2008. A few months later my Dr. started me on B12 shots (I give to myself once a month) and more recently on prescription D. I just keep feeling better and better, unless I slip up and poison myself.

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. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.