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. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,359
    • Most Online (within 30 mins)
      7,748

    Atlanta GF
    Newest Member
    Atlanta GF
    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

    • SilkieFairy
      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
×
×
  • 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.