Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,209
    • Most Online (within 30 mins)
      7,748
    Ashley P.
    Newest Member
    Ashley P.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      Thanks, yes, I've gone back and forth.  There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews.  I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating period.  I'm either going to just going to use what I've learned in these last few months to purposely never cheat again (obviously there is the accidental glutening situations) or test first, and then do that.  I don't need an official diagnosis so much that if I'm doing well I'm going to sabotage that by then starting to eat gluten again. I'm so glad you said this.  Even from what I've read so far, it makes sense to me that this is a misconception.  But growing up with all kinds of allergies, I can see how, as for the general population it's just easier for everyone to simplify it down to a type of "allergy," people would assume this.  It's just how most people look at allergies and diets and gluten avoidance has been painted as both.  I even see it in my journey to date, when I say I want a gluten free selection at a restaurant and I am asked "is it an allergy?" and it is so much easier just to say yes (even if the answer is actually well, no, it's autoimmune).  Because the "yes" answer is the "this is serious" answer.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
×
×
  • Create New...