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

Fixing My Vitamin D Levels

MycasMommy

By MycasMommy
in Coping with Celiac Disease

Recommended Posts

MycasMommy Enthusiast
MycasMommy
Posted

So the doctor called yesterday. I do not know why I am so upset about this.  She told me my vitamin D levels were still really low. I am taking D3 4000 IU every day (spaced out), in chewable form. She wrote a prescription for me for some D2 and told me that it may seem like a lot but just do it.  So i will take it for 2 weeks and then have another test in a month. I just dont know what else I can possibly DO to fix this! I am, thankfully, able to eat dairy and I do so often. I had surgery that removed part of my intestine so absorbing some things is harder, but my Vitamin D levels were below before that too. Maybe a tanning bed?? But i am SO SO white and burn in a heartbeat.. *sighs*  OK.. I really dont know why this is so upsetting.

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

Celiac.com Sponsor (A8-M):


flowerqueen Community Regular
flowerqueen
Posted

Mine used to be low too. How long have you had celiac disease? It can take a while to build yourself up again from a host of deficiencies (vitamins and minerals). I wouldn't advise a tanning bed, these carry their own health risks without adding to what you have already. Supplements are a much safer alternative.

MycasMommy Enthusiast
MycasMommy
Posted
  • Author

Mine used to be low too. How long have you had celiac disease? It can take a while to build yourself up again from a host of deficiencies (vitamins and minerals). I wouldn't advise a tanning bed, these carry their own health risks without adding to what you have already. Supplements are a much safer alternative.

Gluten free for  about 2 years now. There have been accidents here and there along the learning curve and a few accidental incidents. I am just so frustrated. I am afraid to even ask about my folates.  If I want another baby, it will have to be soon (I am 38) and I need these issues FIXED first, for the safety of everyone.

flowerqueen Community Regular
flowerqueen
Posted

I can understand that. I have found that I need to take supplements all the time, as I don't absorb enough if certain vitamins and minerals. Before you get pregnant you should get all the levels checked, and take your doctor's advice on which supplements you can take whilst pregnant.

icelandgirl Proficient
icelandgirl
Posted

I'm sorry...that sounds frustrating! I had my last baby 2 months before I turned 40 so you have time! Do you know what your levels are now and what they were previously? It would be good to know that to see if there is at least improvement. I know that it takes a while for vitamin D levels to go up. I believe mine went up 3 points in 4 months. I'm still supplementing.

Also...As I understand it, you want to take D3 not D2. I believe that D3 is the usable form...someone please correct me if I'm wrong. Although apparently sun exposure is the best source...just enough for your skin to turn pink. I try to do that any day it's warm enough.

MycasMommy Enthusiast
MycasMommy
Posted
  • Author

I have been taking the D3 for just that reason Icelandgirl. My doctor asked and then said Hmm.... and said she wanted to try this in addition. I do not know the reasoning behind it though. I make sure I spend 20 minutes outside in the sun every day at least. I WAS living in Hawaii the past 8 years too and so had much more exposure. Ive only been here in Seattle 8 weeks now. Its too cold to expose much skin.

 

I am fine with taking supplements all the time flowequeen. In fact, I have been taking them religiously.. it just doesnt seem to be working.  I did not get to see my lab work directly so I do not know the exact levels. She called me on the phone and just said that it was still really low and then the new plan. :(

 

Thanks for the baby hope Icelandgirl!

icelandgirl Proficient
icelandgirl
Posted

Aww...it sounds really frustrating... (hugs)...I hope the new plan works quickly!

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

Vitamin D3 is the way to go, take as much of that as your doc gave you a script for the D2.  and get enough fat in you diet, with the D! it is a FAT soluble vitamin.  I don't know any stats on tanning beds...

knitty kitty Grand Master
knitty kitty
Posted

Hi. I had very low vitamin D levels, too. I took high doses of D3. Improvement was slow until I added flax seed oil for its Omega 3's. Progress was much better, but I didn't really feel healthier until I also supplemented other fat soluble vitamins, A and E. Just seemed like common sense, if I'm low on one fat soluble vitamin because of malabsorption, I'm probably low on the other similar vitamins. It's been several months and I'm feeling much better now.

It just seems like common sense to supplement the whole spectrum of fats the body needs but doesn't get with celiac disease.

sunny2012 Rookie
sunny2012
Posted

Mine stayed bad even after nearly two decades of gluten-free eating. I take several times the RDA of D and get plenty of sunshine. My personal theory is that that part of the intestines does not heal as well as others.

It is pretty common among older adults too.

  • 3 weeks later...
blueshades Newbie
blueshades
Posted

My Vit D levels were super low a few years back too. I took a pill everyday for 2 weeks and when tested it barely moved up! I was advised to take 2 pills a day and it improved but not much.

I have tried liquid vitamins recently as they are easier to absorb :) Especially for our weaker tummies. I take lots of multivitamins now and then (women's multivitamins) and found i feel so much healthier when im taking them (and not glutened). Give them a go :) Vit D takes time, just stay focused on it :) 

Archived

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

Go to topic listing

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

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    2. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    3. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

      Severe severe mouth pain

      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...
    5. Scott Adams
      - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      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/
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,912
    • Most Online (within 30 mins)
      7,748
    journaljenny
    Newest Member
    journaljenny
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      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
      Severe severe mouth pain

      By cristiana · Posted

      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
      gluten free cookie recipes

      By Scott Adams · Posted

      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.