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 Deficiency


dube

Recommended Posts

dube Contributor

Any body else here have low vitamin D? Mine is 11.5. Wondering what everyone is taking?

My pharmacist is sending me 5000 to take daily, instead of the prescription...


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I have never had mine tested as I don't have insurance but I do know I feel a world of difference taking supplements. I take a 5000 once a week and one that has 1000IU and K-2 daily. There have been quite a few on the board with low levels on checking so hopefully they will see this and post their experiences.

covebeach Newbie

Both my teens have extremely low Vitamin D. The orthopedist and endocrinologist put them on 50,000 iu weekly for 6-8 weeks with follow up of 1000 iu per day. That helped somewhat, but because of the absorption issues associated with celiac they still need extra calcium and Vitamin D supplements. They discovered the deficiencies after a series of stress fractures, and are still working to get their Vitamin D within normal range (30).

cassP Contributor

just got mine tested 6 weeks ago- and im at a "26". completely makes sense now- as im having horrific muscle spasm pain everyday. ive been taking 4,000 to 6,000 iu everyday. ive noticed less pain & spasms.

ive just been dosing myself since my doctor neglected to tell me anything. i only knew im deficient cause i always ask them to mail me my results.

i cant wait to discuss it with my doc in april, and then test again later.

twe0708 Community Regular

Just had mine tested too and it is 28, so I am taking Natures Made Calcium with Vit. D and Magnesium 2 x a day.

dube Contributor

Pharmacy just sent me 5000 D3, which he told me to take daily. However, he didnt tell me for how long...

frieze Community Regular

Both my teens have extremely low Vitamin D. The orthopedist and endocrinologist put them on 50,000 iu weekly for 6-8 weeks with follow up of 1000 iu per day. That helped somewhat, but because of the absorption issues associated with celiac they still need extra calcium and Vitamin D supplements. They discovered the deficiencies after a series of stress fractures, and are still working to get their Vitamin D within normal range (30).

If the 50,000 was little emerald green footballs, they were D2 not particularly good, definetely go for D3

and do some research, a level of 30 is considered insufficient....


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

Just had mine tested too and it is 28, so I am taking Natures Made Calcium with Vit. D and Magnesium 2 x a day.

there is very little Vit D in these, you will see VERY little change in you levels.

TSA Rookie

Any body else here have low vitamin D? Mine is 11.5. Wondering what everyone is taking?

My pharmacist is sending me 5000 to take daily, instead of the prescription...

Hello, I just found out my vitamin D was <5! My doctor put me on a vitamin D prescription of 50,000 and yes I do mean fifty thousand! I take one pill twice a week. Just started taking it yesterday so I nothing to share at the moment. I wake up with sore hands, knees, back and feet every morning! I'm praying this will help! Tammy

TSA Rookie

If the 50,000 was little emerald green footballs, they were D2 not particularly good, definetely go for D3

and do some research, a level of 30 is considered insufficient....

The vitamin D that I'm taking are little green footballs! What do you mean they aren't particulary good? Whats the difference between D2 & D3? Thanks! Tammy

frieze Community Regular

The vitamin D that I'm taking are little green footballs! What do you mean they aren't particulary good? Whats the difference between D2 & D3? Thanks! Tammy

It is the plant form of the vitamin, not well absorbed. Remember, we are designed to get our Vit D from the sun. not food!...check out the grocery store vitamin section you should ba able to find at least 5000 unit gel caps of D3. check out vitaminDcouncil.org good luck

pondy Contributor

Any body else here have low vitamin D? Mine is 11.5. Wondering what everyone is taking?

My pharmacist is sending me 5000 to take daily, instead of the prescription...

I have a D deficiency also. My doctor has me taking 2,000 IU of D3 daily. I use the brand Spring Valley - they're gluten, wheat, lactose free.

I haven't noticed any improvements in my bone, joint or muscle pain yet - but it's only been about 4 days that I've been taking them.

twe0708 Community Regular

there is very little Vit D in these, you will see VERY little change in you levels.

So after seeing what everyone else is taking, I guess 200 I.U. isn't enough. Do I have to ask my doc about the 5000 and if I am low why wouldn't he prescribe me those in the first place?

sb2178 Enthusiast

5000 IU is available OTC. 28 is low, but you're generally not considered officially 'deficient" until you drop to 16.

If you live someplace sunny, he may also assume it will rise seasonally once you're back out in the sun. Which it likely will.

I'll just caution everyone to not get too carried away. It is a fat-soluble vintamin which means theoretically you can overdose on it. If you're taking a high dose, follow-up blood work is a sensible precaution.

(Me: 5,000 or 10,000 IU per week with a history of both deficiency and low levels while on 1,000 IU per day)

cassP Contributor

So after seeing what everyone else is taking, I guess 200 I.U. isn't enough. Do I have to ask my doc about the 5000 and if I am low why wouldn't he prescribe me those in the first place?

i would ASSUME that 200 is not enough. now- im only ASSUMING, cause my doc didnt tell me a damn thing... ive had to go about this on my own for now. ive been reading advice from members on here, and the D3 supplement i bought from the doctor i whole heartedly respect comes in servings of 2000 iu per capsule. i think the bottle said take 1 or 2 per day. i was taking 2 a day, but when i saw people onhere taking more, i upped mine to 3 a day (6,000 iu).

not sure if what im doing is right, so i will plan to ask my doc in april, and do follow up testing. i HAVE noticed LESS muscle spasms, and LESS muscle pain. i still have muscle aches- but it HAS definitely improved.

julandjo Explorer

When tested soon after my Celiac diagnosis, my Vit D level was 25. My doc put me on 50,000 IU of D3 once a week for 3 months, then dropped it down to once a month dosing. I do take over-the-counter supplements daily. My bloodwork last week has me up at 53 now; it's working!

Igg postive Rookie

Any body else here have low vitamin D? Mine is 11.5. Wondering what everyone is taking?

My pharmacist is sending me 5000 to take daily, instead of the prescription...

My D were very low several years ago, before I ever heard of gluten intolerance. I tried taking the over the counter D3 put I couldn't bring my levels up. Doctor prescribed the little green football pills (D2). With D2 my D levels came up to acceptable levels. I will check out the information on D2 Vs D3. I noticed that since D2 does not absorb as good as D3 so it takes much more of D2 units. I know 50,000 units sound like a lot. Hope your D levels improve! Keep us updated as to your results.

WW340 Rookie

My vitamin D level was 17. I was prescribed drisdol 50,000 IU 2 x week for several months. My levels went up to the 60's. I was told to take vit. D 3 5000 IU per day. I have dropped back down to 39, so I suspect I will have to go back to the prescription med., since I have osteoporosis and they are trying to optimize my vitamin d while I am on forteo.

frieze Community Regular

My vitamin D level was 17. I was prescribed drisdol 50,000 IU 2 x week for several months. My levels went up to the 60's. I was told to take vit. D 3 5000 IU per day. I have dropped back down to 39, so I suspect I will have to go back to the prescription med., since I have osteoporosis and they are trying to optimize my vitamin d while I am on forteo.

NO! no need to go back on prescription D2! you can get D3 in 50000 units now.

and you can simply double/triple the 5000 units caps you already have.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748

    Rockette47
    Newest Member
    Rockette47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
    • Martha Mitchell
      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • 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.