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 Question


dancinlesh

Recommended Posts

dancinlesh Newbie

This is my first post and I'm wondering if anyone can help me out.

 

I had blood work done and was put on Vitamin D 50,000 IU for two months then off one month. After another round of testing, my results were as follows:

 

Total - 22

D3 - 6

D2 - 16

 

My current doctor now has me on 1,000 IU a day. Something in me just doesn't think this is enough. If the 50,000 IU only took the D3 up high enough to have me at 6 after two months on and one month off, is 1,000 IU a day really going to do anything? I've read quite a bit and think I should be on more. Just looking for other opinions though.

 

I was diagnosed via bloodwork and biopsy 13 months ago. I'm also lactose intolerant.

 

Thanks in advance


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

The total number is all my doc ever cared about, but even still. 22 still seems low, IMHO. 

What was it before you took the mega-doses ?

dilettantesteph Collaborator

It sounds like you doctor is current with the latest recommendations which came out relatively recently.  If you are in the US, 20 is considered just fine.

 

What your levels should be depend on the units used for the test which are different in the US and Canada.  Also, a lot of tests still use out dated values.  This is the latest information that I know about: Open Original Shared Link

 

This is the press release which gives a summary: Open Original Shared Link

 

" The measurements of sufficiency and deficiency — the cutpoints — that clinical laboratories use to report test results have not been based on rigorous scientific studies and are not standardized."

 

"almost all individuals get sufficient vitamin D when their blood levels are at or above 20 nanograms per milliliter as it is measured in America, or 50 nanomoles per liter as measured in Canada. "

 

"Upper intake levels represent the upper safe boundary and should not be misunderstood as amounts people need or should strive to consume.  The upper intake levels for vitamin D are 2,500 IUs per day for children ages 1 through 3; 3,000 IUs daily for children 4 through 8 years old; and 4,000 IUs daily for all others. "

IrishHeart Veteran

 

It sounds like you doctor is current with the latest recommendations which came out relatively recently.  If you are in the US, 20 is considered just fine.

 

 

 

 

Mine was 13. Then it creeped up to 29. My doc wanted me over 50.

Maybe there is no agreement among professionals (which does not surprise me) 

 

Open Original Shared Link

 

Table 1: Serum 25-Hydroxyvitamin D [25(OH)D] Concentrations and Health* [Open Original Shared Link] nmol/L** ng/mL* Health status <30 <12 Associated with vitamin D deficiency, leading to rickets in infants and children and osteomalacia in adults 30–50 12–20 Generally considered inadequate for bone and overall health in healthy individuals ≥50 ≥20 Generally considered adequate for bone and overall health in healthy individuals >125 >50 Emerging evidence links potential adverse effects to such high levels, particularly >150 nmol/L (>60 ng/mL)

* Serum concentrations of 25(OH)D are reported in both nanomoles per liter (nmol/L) and nanograms per milliliter (ng/mL).

** 1 nmol/L = 0.4 ng/mL

sweetsailing Apprentice

My nutritionist recommended to me that she wanted my Vit D level around 70.  I started out at 23 and was taking 5,000 IU a day and it took 6 months to bring it up to 43.  I am still taking 5,000 IU a day. 

IrishHeart Veteran

My nutritionist recommended to me that she wanted my Vit D level around 70.  I started out at 23 and was taking 5,000 IU a day and it took 6 months to bring it up to 43.  I am still taking 5,000 IU a day. 

 

As far as I know, the recommended highest threshold  dose per week is no more than 10,000 IUs**. Be careful, hon.

You really can overdo supplements of all kinds contrary to those who think "more is better and we just pee it out".

Not really true.

 

Edited to add: That should read 28,000 IUs Math/typo/stoopid error)

NoGlutenCooties Contributor

I'm not sure about the risks of taking very high doses over the long term, but my Vit D was at 49.  My doctor said that was ok but could be higher - 55 to 60 is the end goal.


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



Celiac.com Sponsor (A8-M):



moosemalibu Collaborator

As far as I know, the recommended highest threshold  dose per week is no more than 10,000 IUs. Be careful, hon.

You really can overdo supplements of all kinds contrary to those who think "more is better and we just pee it out".

Not really true.

 

Vitamins A, D, E and K are fat soluble and get stores in the fat tissue and can reach toxicity levels if you over supplement. Irish is right about that. Water soluble vitamins, however you can take excessively and you will pee them out.

IrishHeart Veteran

I have to add that even the Bs can accumulate too much. 

I had too much B6 in my system (which gave me nerve/ burning pain)

and then, very high B-12 in my system.

 

My doc had me back waaay the heck off and stop supplementing.

 

Once you start absorbing, you really can achieve toxic levels of all vitamins.

I know what it says on various places on the internet, but I had it happen to me.

Just sayin. :)

dilettantesteph Collaborator

 

 

Open Original Shared Link

 

 

This reference gives the same numbers as the one I gave.  It says 

"≥20 Generally considered adequate for bone and overall health in healthy individuals" - thats ng/mL, the units used in the US.

 

As far as your doctor saying that he wants you above 50, it also says 

">50 Emerging evidence links potential adverse effects to such high levels, particularly >150 nmol/L (>60 ng/mL)"

 

 

I would discuss that with your doctor.  Since this is emerging evidence, he may not be aware of it yet.

dilettantesteph Collaborator

As far as I know, the recommended highest threshold  dose per week is no more than 10,000 IUs. Be careful, hon.

You really can overdo supplements of all kinds contrary to those who think "more is better and we just pee it out".

Not really true.

 

My reference above, as well as the one you linked to, IrishHeart, give 4,000 IU as the upper threshold for daily safe intake.

IrishHeart Veteran

My reference above, as well as the one you linked to, IrishHeart, give 4,000 IU as the upper threshold for daily safe intake.

well, my math/typing really sucks...Thanks, Steph!!.  

(sorry, I meant to type  around 20,000 IUs)  But even still... that would be more like 28,000 IUs.

 

I will edit it.

 

I am sure my doc(this is the female GYN) had her reasons for wanting mine just above 50

( I was headed toward osteoporosis) but I can ask.

 

 I do not take any high doses of any supplements anymore anyway.. I take cal/mag.D 1200/600/1000 IUs. daily. No need for mega doses of B-12, folate as I once did.

 

I live in Florida now and  I get enough sunshine.  :)  And obviously, it has gone to my head

because I can't type or add today....I plead hot and humid.? lol 

pricklypear1971 Community Regular

I can't gain and hold D or iron, which is a major issue because of my thyroid.

This week my doc finally put me on 50k iu LIQUID D3/week for a while. I take 25k 2x a week.

You probably can't absorb pulls very well - Cekiac can do that. She has several Celiac/Hashis patients that are stuck like this. We are focusing now more on rebuilding gut and calming autoimmunity (2 1/2 years gluten-free so you'd think this would have happened - no other obvious intolerances and yet...).

Anyway, I am on super powdered probiotics and l-glutamine now along with iron, multis, chromium...

I suggest powdered and liquid vitamins if you have an issue gaining vit levels. Next stop for me is d3 injections. My iron isn't low enough for infusions, but seems to at least rise and hold better with supplaments.

So, 50k/week is not unheard of if you've tried the traditional up to 5k/day route. I also get bloodwork every 3 months (gotta love thyroid disease)...so my d levels are monitored.

I can't stop taking d or iron or my levels dive...so I don't understand why you were off d for a month after the 50k. You should have been tested at the end of that month. You may need much higher doses to keep your d up.

IrishHeart Veteran

I can't stop taking d or iron or my levels dive...

 

Why is that Prickly?

could there be something else going on?

 

My dad's iron levels dumped frequently. He had bi-weekly blood transfusions for 8+ years.

But, he had intestinal bleeds (surely, he was an undiagnosed celiac, we now know)

 

I worry about you. :unsure: xx

pricklypear1971 Community Regular

Why is that Prickly?

could there be something else going on?

My dad's iron levels dumped frequently. He had bi-weekly blood transfusions for 8+ years.

But, he had intestinal bleeds (surely, he was an undiagnosed celiac, we now know)

I worry about you. :unsure: xx

We don't know. There's lots of paperwork out there where Hashis patients struggle with d and iron (which are ironically imperative for meds to work). I haven't found a study showing if this is because of celiac disease or Hashis. I did find something about how hypothyroid patients don't transmit nutrients well, which contributes - this is at the cellular feedback level, not absorption. Same way we don't complete our thyroid feedback loop. I know I'm saying this badly...but the point is that it probably goes beyond the gut.

Right now we're trying to boost vit levels to boost thyroid med uptake. Sometimes they get stuck in a loop and something needs to give. Having luck with t3, hoping d and iron go up and help with all of it. Hashis is kicking my butt.

dancinlesh Newbie

Oh my goodness!! Thank you all so much for the info!

 

I was off the 50,000 because the doc who put me on it was a rheumatologist who I only saw once because he was a jerk. I couldn't get in to see my primary before my script ran out and they wouldn't refill the script without retesting my level.

 

I'm not sure what my level was before the 50,000. The rheumatologist, who, as I already said was a jerk, has yet to send the records to my primary doc.

 

Perhaps I should talk to my GI doc about the vitamin d levels instead of my primary. Maybe she would better understand the need to increase the level than the first year resident who is my primary at the clinic I go to.

 

Thank you all again! I never expected so many answers!!

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

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

    • Total Members
      132,697
    • Most Online (within 30 mins)
      7,748

    Nicole Poirier
    Newest Member
    Nicole Poirier
    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

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.