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

Did Your Vitamin D Levels Go Up?


1desperateladysaved

Recommended Posts

1desperateladysaved Proficient

I have tests only from a year back, so I think I am due.

 

October 2012:  30

June 2013  33  (have gone  up more by now)

 

Going up 3 points isn't very impressive to me.  Anyone else have some scores?

 

Dee.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

What units are you using?  If it's ng/mL, your levels are good, if it's nmol/L not so good.

Open Original Shared Link

 

My last values were in the normal range while a year after diagnosis I was deficient.

nvsmom Community Regular

My D was at the low end of normal before diagnosis, when I was taking 2-3000 IU per day.  After 2 years gluten-free, and taking 10,000 IU per day my D is still at the low end of normal.  :rolleyes:  I blame some of that on living in Canada. LOL

1desperateladysaved Proficient

Hmmmm I seem to have lost a post so I am sorry if it is here twice.  My 33 was within normal, but it was on the border.  My nurse felt I should be midrange.  I am not sure what units were being used, perhaps later I can look it up.

 

Dee

FruitEnthusiast Enthusiast

My ND told me to take 5000 iu per day as a minimum. The sun is supposed to be the best source of D. I live in So California so 10 minutes a day is the recommended time here. I haven't been consistent about doing it. The time needed depends on where you live, and the sun being out of course. Seems like even getting occasional sun might help if the supplements aren't doing it.

 

I don't know if D is one of those supplements that need to be taken with enough of something else for full absorption?

1desperateladysaved Proficient

I would like to know the answer to Fruit Enthusiast's question whether vitamin D is better absorbed with anything in particular.  I am having more doctors analyze how much I should be taking.  I guess it somewhat would depend on whether my levels have risen.  I guess I got my sunshine today!  All winter, though, I only stuck my face in the sun.  If one could get it through the windows that would be nice.  It is too cold in MN to venture out many days, but often the sun shines in through the window, but I have heard that you can't get vitamin D through glass.

HavaneseMom Explorer

Mine was 19 at diagnosis, and was up to 29 at my 6 month follow up. My doctor said I should try to get it up to somewhere between 50-60 for optimal benefits. I had been taking 3000-5000 IU a day for 6 months, and it only went up 10 points. It must be a slow one to rise for some people. I am in Michigan and get very little sun too.


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



Celiac.com Sponsor (A8-M):



NatureChick Rookie

I find it practically impossible to raise my vitamin D levels using supplements alone. I have both 5,000 I.U. and 1,000 I.U. and take them interchangeably with full meals that have a variety of food types but they don't seem to make much difference. Sorry, but I'm not sure where my latest test results are to see the numbers but I think I remember them only changing by about 2 points in six months the last time I had them tested. Of course, I don't take supplements every day, but I probably manage to remember 40-50% of the time because I still need to get my numbers up another 20 points or so.

But I tend to back off of taking supplements when I think that I'm experiencing side effects and vitamin D does have some serious ones when taking the higher-level doses or even lower-levels for too long. So I end up living in a "damned if you do, damned if you don't" sort of limbo. 

I keep trying to make a concerted effort to just get more rays but it is tough. I'm outside all of the time except in the winter, but normally in the shade.
 

sweetsailing Apprentice

My level started at 17, which was actually before I was diagnosed, but one more clue confirming that I likely have celiac.  I started taking 5,000 I.U per day and 6 months later my level was up to 43.  I stopped taking the supplements and just had another level drawn, so we will see if I back slid at all once I stopped the supplements.

FruitEnthusiast Enthusiast

I don't even know what my D level is. I haven't had it checked. I was taking 1000 I.U. daily as recommended by my GI, then my Naturopathic Dr. told me to start taking 5000 I.U. without getting my D checked first (I wonder about her sometimes). I'm not aware of any adverse affects, but I'd really like to get opinions about whether my D level is something that I should have checked. It sounds like most of you are testing your D levels on a somewhat regular basis?

 

It seems to me like a good idea to have any vitamin/mineral levels checked that can be dangerously low or high. When I ask my ND about checking them, she doesn't seem as concerned as I am (?).

 

Also, I do live in sunny So CA, but I'm a redhead and the sun actually hurts my skin when it's too intense, which is practically always in the summer. So, living in a sunny place isn't always the answer either :)

dilettantesteph Collaborator

I didn't take my supplements with anything and my D levels went up.

1desperateladysaved Proficient

That is interesting.  Did you get out more, or anything?

GottaSki Mentor

Mine was 18 at diagnosis...slowly increased...holding steady in high forties...annual retest is October.

dilettantesteph Collaborator

That is interesting.  Did you get out more, or anything?

 

I don't think so.  I've always spent a lot of time outside.  I lived in that same northern city that whole time too.   I think that healing the damage caused by celiac disease probably helped with my vitamin D levels too.

GottaSki Mentor

Should add that I did supplement for the first couple of years post diagnosis, but haven't been able to tolerate supplements for about three years now and my D numbers have continued to increase -- no change in outdoor activity -- I've always been an outdoors person as long as I am vertical ;)

1desperateladysaved Proficient

I asked my nurse if vitamin D needs to be absorbed by the small intestine.  She didn't think so, it went right to the blood stream.  Maybe one needs more vitamin D when they have celiac untreated?  Any other ideas?  Why would levels go up when one isn't supplemented? 

GottaSki Mentor

I asked my nurse if vitamin D needs to be absorbed by the small intestine.  She didn't think so, it went right to the blood stream.  Maybe one needs more vitamin D when they have celiac untreated?  Any other ideas?  Why would levels go up when one isn't supplemented? 

 

All nutrients are absorbed better once the digestive system begins to function properly.  How is the supplement getting directly into the bloodstream?

1desperateladysaved Proficient

I was referring to vitamin D made the best way, by the sun!

GottaSki Mentor

I was referring to vitamin D made the best way, by the sun!

 

Ah...still don't understand that mechanism because I was in the sun everyday with very few exceptions over the 43 years I was undiagnosed...had low Vitamin D for at least 10 years prior to Celiac Disease diagnosis -- likely a lot longer than that, but it wasn't a test that was run on me in my early years...only know I was anemic since I was 18 -- again was likely anemic earlier but 18 was my first blood test.

kareng Grand Master

I asked my nurse if vitamin D needs to be absorbed by the small intestine. She didn't think so, it went right to the blood stream. Maybe one needs more vitamin D when they have celiac untreated? Any other ideas? Why would levels go up when one isn't supplemented?

If you had Celiac, Levels would go up as you heal and can absorb it better from foods. It's spring/ summer - so you would get more from the sun. In the winter, the angle of the earth makes the sun very weak up where you live and harder to get any D through your skin.

Here is an explanation of how that works. It has to do with the skin and the liver.

Open Original Shared Link

GottaSki Mentor

If you had Celiac, Levels would go up as you heal and can absorb it better from foods. It's spring/ summer - so you would get more from the sun. In the winter, the angle of the earth makes the sun very weak up where you live and harder to get any D through your skin.

Here is an explanation of how that works. It has to do with the skin and the liver.

Open Original Shared Link

 

Thanks Karen :)

1desperateladysaved Proficient

Did you lose any weight?  I haven't.  My weight is in the acceptable range.  The article sighted seems to be saying that fat cells can occlude its usefulness in the body, if I get it right.  I tried to read the whole article, but it kept returning me to page 1.  I did note that sunscreen blocks out the rays that our body makes it from.  I haven't used sunscreen for years and rarely get burned.

 

Dee

dilettantesteph Collaborator

Celiac disease affects all sorts of systems in the body.  I wouldn't be surprised if it is found to affect vitamin D production as well as absorption.  Perhaps that is why vitamin D levels go back up upon removal of gluten from the diet.

thepeach80 Rookie

I was 19 Dec 2010. Took 10000IU daily for a while, didn't get retested until May 2013 and it was 26. Went gluten-free in June and a year later I'm at 32. I have been slacking on Vit D supplement though. 

thepeach80 Rookie

Depending on where you live, getting Vit D from the sun isn't easy to get. Here we have only 3-4 months where the sun is at the right angle etc for absorption. The other 8-9 mos supplements are needed.

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. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

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

      how much gluten do I need to eat before blood tests?

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

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

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748

    MauraBue
    Newest Member
    MauraBue
    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

    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
×
×
  • 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.