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


detritus

Recommended Posts

detritus Apprentice

I just got blood tests back that show I'm extremely deficient in Vitamin D. I started doing a little research on the internet about vitamin D, and found an interesting study about vitamin D and MS. They mentioned that Vitamin D helps the body to differentiate between "self" and "enemy". Since between the Celiac's and my RA, my body is definitely attacking itself, I found this very intriguing. Has anyone else come up vitamin D deficient?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I did. I think a lot of us have. Take your supplement and feel better. I know of people who are deficient and don't have celiac disease. We don't get it in our diets and we don't go in the sun without sunscreen. Also, in most of the US and Canada the sun isn't intense enough many months of the year.

Looking for answers Contributor

Unfortunately, yes. I began becoming interested in this years ago, thanks to Dr. Mercola. He has written a lot about the connection between Vitamin D deficiency and autoimmune disorders, cancers, etc. I believe this contributed a lot to my health problems...not that it causes gluten intolerances, but it may be enough to trigger or "activate" the gene if you have it. Same with RA, MS. Check out mercola.com....you'll probably become as fascinated by it as I did.

kayo Explorer

I live in New England where the sun is sometimes more absent than present. I'm outside soaking up vitamin D (and freckles) whenever that orange globe makes an appearance. Despite my attempts at getting natural vitamin D and taking supplements I've struggled with vitamin D deficiency for years and the only advice my RA doc gave me was 'take vitamin D'. I had a range of 11-20 for years despite taking 1000mg of D daily. Normal range is 25-80. I think he was under the impression I wasn't taking it. You'd think that he would have been clued that something was going on, right? Sigh :angry: It wasn't until I saw the celiac specialist did she make the connection. She put me on 50k units weekly for 8 weeks. That's over and I now take 2000 mg daily. My level is now a healthy 36. :) This a great clue that the diet changes are working. I still have some things going on that are unknown (maybe fructose intolerance, maybe bacterial overgrowth) but I'm healing.

Roda Rising Star

I've been told by my endocrinologist, gyn and gi doctor that my vitamin D level should be a minimal of 50 and optimal at 70. When I started supplementation about 1 1/2 years ago my level was around 17. It is up past 60 now. I have been taking prescription 50,000 iu of vitamin D since then and all my doctors said for me to stay on it year round.

tictax707 Apprentice

I can't remember what my levels are, but they were also pretty low. I have osteopenia, but it's not just celiac related... I am also an endurance athlete, and some days I'll burn more calories in a workout than I do in a typical day. It's hard to keep on top of the caloric outgo versus income. My doctor also put me on supplements, but the ones that were really high in vitamin D also gave me wicked gas. :( So I am trying to keep on top of it with my old caltrate supplement, soymilk, and time in the sun. I get about 1700-1800 daily. It's been less than a year since I found out about the osteopenia, but I am not sure how long it would take to turn the vitamin D levels around.

frieze Community Regular

Vitamin D is measured in IUs (international units) the prescription ones, the little kelly green gel caps, are D2--- not the better of the two commonly available forms. What you really want is D3 which you can get at the health food store, and probably the grocery. The dosage i have seen suggested is 1000 units per 25# of body wt, daily, until levels are up where the need to be.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I don't believe 1700-1800 is a day is enough to start with. That's a good maintenance dose though.

The way my rheumatologist described it to me, if your gas tank is empty, you don't put in just one gallon - that will barely get you to the next gas station. You need to fill up your tank first, and then keep it topped up, otherwise you are always running on empty. So I was taking 50,000 iu every week initially, and now every month (of D3). 50,000 iu seems to be the normal kick-start dose.

detritus Apprentice

I don't believe 1700-1800 is a day is enough to start with. That's a good maintenance dose though.

The way my rheumatologist described it to me, if your gas tank is empty, you don't put in just one gallon - that will barely get you to the next gas station. You need to fill up your tank first, and then keep it topped up, otherwise you are always running on empty. So I was taking 50,000 iu every week initially, and now every month (of D3). 50,000 iu seems to be the normal kick-start dose.

Yes, that's what I was given-the 50,000, iu one per week. I'm supposed to take it for 8 weeks. I'm wondering if eventually my body will be able to extract the vitamins it needs naturally, once my villi are healed. Also, my RBC count is low, but my iron levels are ok......what would I take to increase my red blood cells?

Thanks for all the responses, by the way:)

quincy Contributor

Yes, that's what I was given-the 50,000, iu one per week. I'm supposed to take it for 8 weeks. I'm wondering if eventually my body will be able to extract the vitamins it needs naturally, once my villi are healed. Also, my RBC count is low, but my iron levels are ok......what would I take to increase my red blood cells?

Thanks for all the responses, by the way:)

my endo doc put me on 50,000 iu's twice a week for 6 weeks, then a re test of my levels. I wanted the D3 but she told me it wasnt available in this dosage. once you get your levels up then you can do maintenance at 2000 or so a day with D3.

it is also recommended to get a bone density test and to take calcium plus D twice a day. my bone density test revealed osteopnenia in my right hip bone and I am a male who works out and runs... it was quite a shock.

red meat is good for red blood cells and so is spinach etc.

sb2178 Enthusiast

RBC: possibly folate or B12 (or both)

You'd have to have your dr look at the size of your RBC (it helps if you have a baseline) or other bloodwork.

Yeah, I've been deficient/low now and previously despite OTC supplementation. And no, I don't wear sunscreen but I do live in the cold dark north. It's fairly common. The high dose did bring me back up to normal, but then my levels drop again... I'm now just on 4,000 IU/day endlessly.

The connections btwn D and autoimmune diseases are interesting, but given the length of time needed to study the development of AI diseases, it's difficult to clearly establish a causal association rather than a correlation (present!) in humans.

  • 1 month later...
anabananakins Explorer
I've been told by my endocrinologist, gyn and gi doctor that my vitamin D level should be a minimal of 50 and optimal at 70.

My endocrinologist (I'm insulin resistant) called me today with my results and gave those exact ranges. And mine was 2! And I live in Australia! I was so surprised but now that I've been reading about it, I'm freaked that more people aren't aware. I can't work out what my dosage is compared to yours, but I'm supposed to take 3 tablets and the bottle says the recommended dosage is only one.

This will bring me up to a nice round 20 (various) pills to take each day. Packing for 4 weeks away is going to be fun...

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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.