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.

  • 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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

    • Total Members
      132,914
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.