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

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

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

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

mushroom Proficient

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

PainfulSpaghetti Newbie

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

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

OOH! And this one, too!

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



PainfulSpaghetti Newbie

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

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

quincy Contributor

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

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

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

tarnalberry Community Regular

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

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

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

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

i too had vit d deficiency.

GottaSki Mentor

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

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

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

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

I haven't gotten my test result back yet.

pondy Contributor

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

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

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.

  • 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. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    2. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

    • Total Members
      132,834
    • Most Online (within 30 mins)
      7,748

    SamAlvi
    Newest Member
    SamAlvi
    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

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.