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--Poll

PainfulSpaghetti

Recommended Posts

PainfulSpaghetti Newbie
PainfulSpaghetti
Posted

I am curious as to how many of us have Vitamin D defiencies. Mine was severe, and I struggle to raise my count, and have been all year. Anyone else?

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

Celiac.com Sponsor (A8-M):


tictax707 Apprentice
tictax707
Posted

Me too. I had a vit D deficiency that was spotted 2 years ago. I was tested again just recently and it revealed that I was just below normal. I was all excited and happy but the screener just hollered at me for being low - she didn't know my history. Hopefully next time I will be in the normal range. :)

PainfulSpaghetti Newbie
PainfulSpaghetti
Posted
  • Author

I would be SO excited at being just below normal levels too! Thanks for your response!

mushroom Proficient
mushroom
Posted

I have gone from the low 20's all the way up to 49 :)

PainfulSpaghetti Newbie
PainfulSpaghetti
Posted
  • Author

Good Job Mushroom!! That's awesome! I found this article online: Open Original Shared Link

Wow! Does the defiency make your legs itchy and then hurt?

kellynolan82 Explorer
kellynolan82
Posted

I'm Vitamin D deficient too! Unfortunately I don't spend too much time in the sun but I also don't know about how safe getting Vitamin D capsules is (especially if I would overdose - which apparently is easy to do)... :o

PainfulSpaghetti Newbie
PainfulSpaghetti
Posted
  • Author

OOH! And this one, too!

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


PainfulSpaghetti Newbie
PainfulSpaghetti
Posted
  • Author

The Doctor had me on 50,000 IU a week, and then I was supposed to take 1,000 a day on top of that. That seemed excessive to me so I backed off of the 50,000 a week, and now the symptoms are returning. A doctor has to monitor it, and unfortunately I don't have health insurance. So, I take 2,000 a day. Hopefully it will work itself out!

StephanieL Enthusiast
StephanieL
Posted

I know absorption is an issue with Celiac BUT MOST people are low to very low in Vit. D.

quincy Contributor
quincy
Posted

I am curious as to how many of us have Vitamin D defiencies. Mine was severe, and I struggle to raise my count, and have been all year. Anyone else?

My first reading was 16, then after a few months on 50,000 IU's and a full summer of sun it dropped to 11 !!! So my doctor put me on 50,000 IU's twice a week for 3 months

and it finally, after a year of trying, went to 52. It took a year of healing and persistence with the supplement to get my numbers up. and I have osteopenia. I go to the Celiac Disease Center at Columbia University by the way so my doc is a celiac specialist....

take your vit D level very seriously, and its best to take your supplement w some type of healthy fat, either a salad with some olive oil or a almond butter etc.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Mine is extremely low. Pre-gluten-free, I used OTC supplements but my levels went down... Only gluten-free 6weeks, and reacting to my cc'd OTC D, and my doc doesn't want to give rx 50,000iu's. So frustrating, because I did notice it helped my bone pain before I had to stop taking it. I have more OTC on order now, but still! Bleh.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Mine was high at 66, but I've been taking a suppliment for a couple of years.

tarnalberry Community Regular
tarnalberry
Posted

I am curious as to how many of us have Vitamin D defiencies. Mine was severe, and I struggle to raise my count, and have been all year. Anyone else?

Yes, but I've been gluten-free for ages, and I'm fairly certain it wasn't that at all.

I live in the pacific northwest and most of us (if not significantly supplementing) are either deficient or borderline.

quincy Contributor
quincy
Posted

The Doctor had me on 50,000 IU a week, and then I was supposed to take 1,000 a day on top of that. That seemed excessive to me so I backed off of the 50,000 a week, and now the symptoms are returning. A doctor has to monitor it, and unfortunately I don't have health insurance. So, I take 2,000 a day. Hopefully it will work itself out!

when I was first diagnosed and found out my Vit D was 16, I went to an Endocrinologist and she wanted to put me on 100,000 IU's a week immediately.

well I too balked at those amounts and went against her instructions and just did the 50,000 once a week. well as I said earlier, by the end of the summer

I dropped to 11. After several more months I climed to 18 and then to 23. Finally, my celiac doctor up'd me to 100k a week so I realized that the Endocrinologist was correct all along.

The bone pain subsided with each time I took the dose. Some bone pain has returned to my right hip so I can tell I need to be consistent after dropping off from taking my 2,000 IU's a day now... so be vigilant and don't second guess your doctor with dosages with very low Vit D.

also, I don't know what doctor would not prescribe the vit D if your levels are very low. taking an OTC supp of 2000 a day with very low levels will not get you to where you need to be and in the meantime your bones could be losing density.... not to be an alarmist, but after years of lifting weights, to find out I had osteopenia, I don't mess with what the doctor tells me, IMHO

Roda Rising Star
Roda
Posted

My vitamin D deficiency was detected Jan. 2009 and it was at 17. I have been taking 50,000 iu weekly since. My last level was 60.

quincy Contributor
quincy
Posted

My vitamin D deficiency was detected Jan. 2009 and it was at 17. I have been taking 50,000 iu weekly since. My last level was 60.

thats great progress Roda, are you on maintenance now? if so, what are you taking daily?

viviendoparajesus Apprentice
viviendoparajesus
Posted

i too had vit d deficiency.

GottaSki Mentor
GottaSki
Posted

Mine was 16 when diagnosed two years ago...it improved to 38 at a year gluten free with supplementation - thanks for the reminder that it's time to get it checked again :)

mushroom Proficient
mushroom
Posted

If it is just D that is low, that one can consider latitude or not enough time in the sun. If other things are low, like B12, folate, A, iron/ferritin, etc., that it is probably lack of absorption.

PainfulSpaghetti Newbie
PainfulSpaghetti
Posted
  • Author

Thank you all so much for your replies. I will definitely go back in and have it checked again. Good luck to all!

Roda Rising Star
Roda
Posted

thats great progress Roda, are you on maintenance now? if so, what are you taking daily?

I'm still taking the prescription vitamin D 50,000 iu/weekly. I was told to stay on it indefinately. I get my vitamin D levels checked about every 4-6 months.

Edited due to typo

Schatz Apprentice
Schatz
Posted

I haven't gotten my test result back yet.

pondy Contributor
pondy
Posted

I am curious as to how many of us have Vitamin D defiencies. Mine was severe, and I struggle to raise my count, and have been all year. Anyone else?

Just had mine re-tested last week. Doctor said it's up to "40" - 40 what I don't know. All I know is that 6 months ago it was something like a 15.

I take 2000 IU per day.

zentex Newbie
zentex
Posted

During my last physical (a year prior to going gluten-free), my doctor said my levels were low. How low, I don't know because I didn't think to ask. He told to me to start taking 2000IU's a day and get re-checked in a year.

That was in April of 2010. I haven't been back, nor have I been very good about remembering to take the stuff. I don't suffer from any symptoms that I know of, but I've never looked them up either.

It's funny/strange to me how many of these posts I read that mention something that I have or have gone through. This gluten intolerance had a lot of rammifications that I NEVER expected.

lcarter Contributor
lcarter
Posted

I also tested Vit D deficient, so my doctor put me on an extra 1 mcg of Vit 3 daily. But, now am only borderline in the normal range.

We live in Panama a good part of the year which is much closer to the equator than the US, so the sun is much more intense. Unfortunately, because of skin issues, I have to wear total coverage sunscreen + wear a sun hat or carry an umbrella whenever in the direct sun. Even with all this protection, I have a tan line - so you would think that I would be getting enough vit D from sunshine.

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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

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

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

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

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.