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

detritus

By detritus
in Coping with Celiac Disease

Recommended Posts

detritus Apprentice
detritus
Posted

I just got blood tests back that show I'm extremely deficient in Vitamin D. I started doing a little research on the internet about vitamin D, and found an interesting study about vitamin D and MS. They mentioned that Vitamin D helps the body to differentiate between "self" and "enemy". Since between the Celiac's and my RA, my body is definitely attacking itself, I found this very intriguing. Has anyone else come up vitamin D deficient?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I did. I think a lot of us have. Take your supplement and feel better. I know of people who are deficient and don't have celiac disease. We don't get it in our diets and we don't go in the sun without sunscreen. Also, in most of the US and Canada the sun isn't intense enough many months of the year.

Looking for answers Contributor
Looking for answers
Posted

Unfortunately, yes. I began becoming interested in this years ago, thanks to Dr. Mercola. He has written a lot about the connection between Vitamin D deficiency and autoimmune disorders, cancers, etc. I believe this contributed a lot to my health problems...not that it causes gluten intolerances, but it may be enough to trigger or "activate" the gene if you have it. Same with RA, MS. Check out mercola.com....you'll probably become as fascinated by it as I did.

kayo Explorer
kayo
Posted

I live in New England where the sun is sometimes more absent than present. I'm outside soaking up vitamin D (and freckles) whenever that orange globe makes an appearance. Despite my attempts at getting natural vitamin D and taking supplements I've struggled with vitamin D deficiency for years and the only advice my RA doc gave me was 'take vitamin D'. I had a range of 11-20 for years despite taking 1000mg of D daily. Normal range is 25-80. I think he was under the impression I wasn't taking it. You'd think that he would have been clued that something was going on, right? Sigh :angry: It wasn't until I saw the celiac specialist did she make the connection. She put me on 50k units weekly for 8 weeks. That's over and I now take 2000 mg daily. My level is now a healthy 36. :) This a great clue that the diet changes are working. I still have some things going on that are unknown (maybe fructose intolerance, maybe bacterial overgrowth) but I'm healing.

Roda Rising Star
Roda
Posted

I've been told by my endocrinologist, gyn and gi doctor that my vitamin D level should be a minimal of 50 and optimal at 70. When I started supplementation about 1 1/2 years ago my level was around 17. It is up past 60 now. I have been taking prescription 50,000 iu of vitamin D since then and all my doctors said for me to stay on it year round.

tictax707 Apprentice
tictax707
Posted

I can't remember what my levels are, but they were also pretty low. I have osteopenia, but it's not just celiac related... I am also an endurance athlete, and some days I'll burn more calories in a workout than I do in a typical day. It's hard to keep on top of the caloric outgo versus income. My doctor also put me on supplements, but the ones that were really high in vitamin D also gave me wicked gas. :( So I am trying to keep on top of it with my old caltrate supplement, soymilk, and time in the sun. I get about 1700-1800 daily. It's been less than a year since I found out about the osteopenia, but I am not sure how long it would take to turn the vitamin D levels around.

frieze Community Regular
frieze
Posted

Vitamin D is measured in IUs (international units) the prescription ones, the little kelly green gel caps, are D2--- not the better of the two commonly available forms. What you really want is D3 which you can get at the health food store, and probably the grocery. The dosage i have seen suggested is 1000 units per 25# of body wt, daily, until levels are up where the need to be.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I don't believe 1700-1800 is a day is enough to start with. That's a good maintenance dose though.

The way my rheumatologist described it to me, if your gas tank is empty, you don't put in just one gallon - that will barely get you to the next gas station. You need to fill up your tank first, and then keep it topped up, otherwise you are always running on empty. So I was taking 50,000 iu every week initially, and now every month (of D3). 50,000 iu seems to be the normal kick-start dose.

detritus Apprentice
detritus
Posted
  • Author

I don't believe 1700-1800 is a day is enough to start with. That's a good maintenance dose though.

The way my rheumatologist described it to me, if your gas tank is empty, you don't put in just one gallon - that will barely get you to the next gas station. You need to fill up your tank first, and then keep it topped up, otherwise you are always running on empty. So I was taking 50,000 iu every week initially, and now every month (of D3). 50,000 iu seems to be the normal kick-start dose.

Yes, that's what I was given-the 50,000, iu one per week. I'm supposed to take it for 8 weeks. I'm wondering if eventually my body will be able to extract the vitamins it needs naturally, once my villi are healed. Also, my RBC count is low, but my iron levels are ok......what would I take to increase my red blood cells?

Thanks for all the responses, by the way:)

quincy Contributor
quincy
Posted

Yes, that's what I was given-the 50,000, iu one per week. I'm supposed to take it for 8 weeks. I'm wondering if eventually my body will be able to extract the vitamins it needs naturally, once my villi are healed. Also, my RBC count is low, but my iron levels are ok......what would I take to increase my red blood cells?

Thanks for all the responses, by the way:)

my endo doc put me on 50,000 iu's twice a week for 6 weeks, then a re test of my levels. I wanted the D3 but she told me it wasnt available in this dosage. once you get your levels up then you can do maintenance at 2000 or so a day with D3.

it is also recommended to get a bone density test and to take calcium plus D twice a day. my bone density test revealed osteopnenia in my right hip bone and I am a male who works out and runs... it was quite a shock.

red meat is good for red blood cells and so is spinach etc.

sb2178 Enthusiast
sb2178
Posted

RBC: possibly folate or B12 (or both)

You'd have to have your dr look at the size of your RBC (it helps if you have a baseline) or other bloodwork.

Yeah, I've been deficient/low now and previously despite OTC supplementation. And no, I don't wear sunscreen but I do live in the cold dark north. It's fairly common. The high dose did bring me back up to normal, but then my levels drop again... I'm now just on 4,000 IU/day endlessly.

The connections btwn D and autoimmune diseases are interesting, but given the length of time needed to study the development of AI diseases, it's difficult to clearly establish a causal association rather than a correlation (present!) in humans.

  • 1 month later...
anabananakins Explorer
anabananakins
Posted
I've been told by my endocrinologist, gyn and gi doctor that my vitamin D level should be a minimal of 50 and optimal at 70.

My endocrinologist (I'm insulin resistant) called me today with my results and gave those exact ranges. And mine was 2! And I live in Australia! I was so surprised but now that I've been reading about it, I'm freaked that more people aren't aware. I can't work out what my dosage is compared to yours, but I'm supposed to take 3 tablets and the bottle says the recommended dosage is only one.

This will bring me up to a nice round 20 (various) pills to take each day. Packing for 4 weeks away is going to be fun...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,050
    • Most Online (within 30 mins)
      7,748
    Rima
    Newest Member
    Rima
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
×
×
  • 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.