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 Recommendations?


grey

Recommended Posts

grey Explorer

Hi,

Just had a dexa scan, and sure enough, I have osteopenia. My doctor has ordered me to take Vitamin D, 400 IU, 1-2x/day, retest in 6 mos.

I hoped someone could recommend a vitamin D. I was on prescription vitamin D for a short while; my blood serum levels were really low. Now, however, she's written OTC and I have to find something.

Also, how do I know whether to take 1 or 2 doses? Does the deep bone pain I'm having connect to the osteopenia?

Any other osteopenia recommendations? I knew this was a distinct possibility w/ celiac, but it's still disconcerting since I'm in my early 30s.

Thanks for reading another question from me!


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Ursula knows a lot about this, but unfortunately she's on vacation. I know she says that cod liver oil is the best, and I've read elsewhere that, since vitamin D is a fat soluble vitamin, the non-oil based pills aren't very well absorbed.

It's a popular supplement on this forum so I'm sure you'll get more input. Maybe try the search function at the top of the page.

And just as a reference, I was taking 5000U/day. And I just saw a talk wherein the MD described patients with malabsorption taking 500,000 U/day (no, that's not a typo). So you might want to go with 2x/day.

kevsmom Contributor

Hi Grey,

I take Nature Made brand. Rite Aid and CVS Pharmacies carry this brand. It says right on the label that it doesn't contain gluten.

Cindy

Jestgar Rising Star

From an article that just came out.

Sunlight and Artificial Ultraviolet B Radiation

Sensible sun exposure can provide an adequate amount of vitamin D3, which is stored in body fat and released during the winter, when vitamin D3 cannot be produced. Exposure of arms and legs for 5 to 30 minutes (depending on time of day, season, latitude, and skin pigmentation) between the hours of 10 a.m. and 3 p.m. twice a week is often adequate. Exposure to one minimal erythemal dose while wearing only a bathing suit is equivalent to ingestion of approximately 20,000 IU of vitamin D2. The skin has a great capacity to make vitamin D3, even in the elderly, to reduce the risk of fracture. Most tanning beds emit 2 to 6% ultraviolet B radiation and are a recommended source of vitamin D3 when used in moderation. Tanners had robust levels of 25-hydroxyvitamin D (approximately 45 ng per milliliter [112 nmol per liter]) at the end of the winter and higher bone density as compared with nontanners (with levels of approximately 18 ng per milliliter [45 nmol per liter]).For patients with fat malabsorption, exposure to a tanning bed for 30 to 50% of the time recommended for tanning (with sunscreen on the face) is an excellent means of treating and preventing vitamin D deficiency (Table 3). This reduces the risk of skin cancers associated with ultraviolet B radiation.

Vitamin D Intoxication

Vitamin D intoxication is extremely rare but can be caused by inadvertent or intentional ingestion of excessively high doses. Doses of more than 50,000 IU per day raise levels of 25-hydroxyvitamin D to more than 150 ng per milliliter (374 nmol per liter) and are associated with hypercalcemia and hyperphosphatemia. Doses of 10,000 IU of vitamin D3 per day for up to 5 months, however, do not cause toxicity.Patients with chronic granulomatous disorders are more sensitive to serum 25-hydroxyvitamin D levels above 30 ng per milliliter because of macrophage production of 1,25-dihydroxyvitamin D, which causes hypercalciuria and hypercalcemia. In these patients, however, 25-hydroxyvitamin D levels need to be maintained at approximately 20 to 30 ng per milliliter to prevent vitamin D deficiency and secondary hyperparathyroidism (Table 3).

tarnalberry Community Regular

vit D, which should be in the form of D3, not D2, is not sufficient. a study a while ago found that magnesium was the most important thing for treating osteoporosis in celiacs. you might look into that as well, along with weight bearing exercise.

irish daveyboy Community Regular

Hi Grey,

I take Calchichew - D3 Forte from Shires Pharmaceuticals,

they are quoted as Gluten and Lactose Free.

I take 1 Tablet twice a day.

.

David

Nancym Enthusiast

Open Original Shared Link

I take 2000 iu of oil-based D3, Cholecalciferol (Carlson Laboratories), per day. 400iu is probably not nearly enough based on new research. Avoid Ergocalciferol and only get your D3 that is in gel capsules and is oil based and is not combined with anything else, like calcium. You can look up the reasons why at Open Original Shared Link and search for vitamin d.


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



Celiac.com Sponsor (A8-M):



grey Explorer

Thanks for all the info everyone. I'll talk to my md about upping the amount. I knew there was a certain of vitamin D I should be taking, but vaguely remembered there were other issues about type, etc.

I also have vague memory (I hate not having recall for reading, dratted celiac!) of reading that you should also avoid certain foods before and after taking it. Has anyone run into this?

thanks!

Nancym Enthusiast

You should take it with fat, it is a fat soluable vitamin. It's also good to take it with calcium and magnesium (not in the same tablet as the D3). You might want to look into vitamin K2. That heartscan doctor blog talks about it as well, but basically it causes your body to deposit calcium into the bones, not the heart!

akceliac Newbie

Hello grey,

Since Nov 2006, I discovered that I am borderline osteoporosis. I had a lot of bone and muscle pain. So the doctor finally ordered a vitamin D test as a last resort. I was Vitamin D deficient. D2=8.3 and D3=14.

At first the doctor said to take 800 IU per day. Then later that day she called me to say that she wanted me to take 16,000 IU of vitamin D2 liquid for 3 weeks. Since it was an OTC product and costs $100 per week I decided that I would not be taking more than one week of it. I researched vitamin D at the Vitamin D Council website and found a wealth of information. I have since been taking 5,000 IU of a powdered form of Vitamin D3 and within 90 days my D2=11 and D3=43.

I was having lots of problems with calcium making me sick until I added the mega doses of Vitamin D. Now I can take the liquid calcium without any side effects and I have noticed that the pain has subsided somewhat.

Even though my Vitamin D3 levels are increasing, it it taking time to heal. I suspect it will be a lengthy process. But at least I'm headed in the right direction.

'Hope you are finding the answers you seek.

elye Community Regular

Direct sunshine onto the skin is the best delivery system for D3, by far. Twenty minutes a day is enough. I now make a point of being out in the sun with as much skin exposed as possible (difficult during Ottawa winters!) for my half-hour shift, each day. Much cheaper, as well, than supplements! :)

darkangel Rookie
Any other osteopenia recommendations? I knew this was a distinct possibility w/ celiac, but it's still disconcerting since I'm in my early 30s.

Osteopenia here, too. Cause thought to be two or three rounds of Prednisone.

Following the diet and doing whatever you can to improve your digestion and/or heal leaky gut will help. Also extremely important: weight bearing exercise. A serious weight training program along with regular walking has my bone density improving. And that's without calcium/D supplementation. Not saying you shouldn't supplement, but just to point out the weight bearing exercise plays a key role.

loraleena Contributor

I have read on Mercola .com that Cod liver oil is the best way to get vit d for all but the summer months if you get a lot of sun. Then you can take regular fish oil. Carlsons, or nordic naturals are best.

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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.