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

How Much Vitamin D Are You Taking?


AVR1962

Recommended Posts

AVR1962 Collaborator

Just curious from those who are supplementing, how much vitamin D you are taking in? Have you found a connection to supplementing with vitamin D that has helped with any of your symptoms? Could you specify which symptoms? I think I may have found a link for myself and just curious. I recently increased my D and I actually think it is helping my ataxia. This has been an issues for 7 months now.


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



Celiac.com Sponsor (A8-M):



maximoo Enthusiast

I believe it has to do with your weight, and how deficient you are. My DD who weighs 78 lbs takes 1000 a dy whereas my DS takes 2000 and he weighs 118 lbs. DD is/was moderately deficient & DD borderline. They both need a recheck in Dec. My best friend who has severe bone issues has to take 50,000 pr day. She is 49 yo and has the bones of an 80 yo.

I think the recommended daily intake is 2000 if your levels are normal. I've read that a vit D deficiency helps contribute to high blood pressure. It is interesting to compare with other folks but it really depends on how deficient each individual is and other problems they may have.

AVR1962 Collaborator

I believe it has to do with your weight, and how deficient you are. My DD who weighs 78 lbs takes 1000 a dy whereas my DS takes 2000 and he weighs 118 lbs. DD is/was moderately deficient & DD borderline. They both need a recheck in Dec. My best friend who has severe bone issues has to take 50,000 pr day. She is 49 yo and has the bones of an 80 yo.

I think the recommended daily intake is 2000 if your levels are normal. I've read that a vit D deficiency helps contribute to high blood pressure. It is interesting to compare with other folks but it really depends on how deficient each individual is and other problems they may have.

Weight and degree of deficiency makes sense, something I didn't think about. I too have bone loss in both legs and spine, age 48. I just upped my vit D to 8000. Interesting what you read about high blood pressure and vit D defienciency. That may explains my high blood pressure back in Feb/March, I had never had high blood pressure before.

pricklypear1971 Community Regular

I took 5000 iu/day for a week, now down to 7800 iu/WEEK.

I was/am deficient by testing.

Since starting d and iron my shaky hands have stabilized.

Remember, I also live in the desert so I will get more winter sun than most other people. I turn on like a light bulb in the sun.

saintmaybe Collaborator

I'm taking 10,000 IU/day. But then, my blood tests were, OMG WHY AREN'T YOU DEAD YET? defcient back in May. I think I was, 12? Very low, at any rate. I feel better- fewer migraines, much less bruising. I don't know what's D and what's gluten free, but I'm erring on the side of being genetically incapable of manufacturing or absorbing this nutrient myself, since I work outside for 10 hours a day.

pricklypear1971 Community Regular

I'm taking 10,000 IU/day. But then, my blood tests were, OMG WHY AREN'T YOU DEAD YET? defcient back in May. I think I was, 12? Very low, at any rate. I feel better- fewer migraines, much less bruising. I don't know what's D and what's gluten free, but I'm erring on the side of being genetically incapable of manufacturing or absorbing this nutrient myself, since I work outside for 10 hours a day.

When are your follow up labs?

Mine are in December....so that will be 5 months on supplements.

captaincrab55 Collaborator

Back in May My Vitamin D was 14.6 and was give a script for 50,000IU once a week... August my D was up to 28 and my Doc issued another round of the same for 12 weeks with 1 refill... As my D level rose, my BP med was cut and now take half of what I was taking in May... I'm due for a lab in 4 weeks to check it again..


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



Celiac.com Sponsor (A8-M):



bny06 Apprentice

My level just came back at 21... (the lab's normal low was 32) My dr said she was going to call in a Rx to take once a week ( i think it was 50,000) she said i'll be taking it once a week for a few months and then the dosage will decrease.. I hope your right - i hope it helps with the ataxia/neuro symptoms!!! What was your level?

rainer83 Newbie

I take a multivitamin and it has 200IU, but when the days start getting shorter here, I take some D Drops because the lack of sunlight really tends to get to me. I find vitamin D mostly helps with my emotional state. I don't feel as moody as I did before, and have more energy when I take some vitamin D.

saintmaybe Collaborator

When are your follow up labs?

Mine are in December....so that will be 5 months on supplements.

Weeellll, that's a bit of a sticky situation. I live in Massachusetts, and they're revamping the healthcare system here again to a global payment system from fee for service. The docs are pre-emptively cutting down on visits and tests in preparation.

My last visit to my GP, I asked her about my hair falling out (and I do mean significantly), and all she said was, "Well, these things can take a while to resolve themselves."

When I told her about gong gluten free and asked her about possible celiac, she was familiar with the testing conditions necessary, but was unwilling to consider further possiblities or testing unless I went back on gluten. I can't.

I am absolutely incapacitated on gluten, and I can't lose my job. I'm in my late 20's, and in that unlucky cohort that's really unhireable right now. Otherwise she said "See you in six months."

What I'm doing now is trying to get in as a patient n an integrative medicine center near boston that specializes in celiac, GI, and metabolic disorders. They do nutrition therapy, metabolic panels, standard western prescriptions if necessary, acupuncture, pain control and pain management. The name is The Rothfeld Center, for any other Bay State citizens or persons living in New England and willing to make a drive. Apparently they are well worth the effort.

They come really highly recommended by a customer of mine who is also Celiac. She noticed I was visibly unwell one day, asked what was wrong, and we had an hour long conversation about nutriton. Celiacs are legion, people!

Skylark Collaborator

Between my multi and extra D3 I'm taking about 3,000 IU of D3 a day to stay over 30 pg/dl. I don't seem to absorb it very well. :(

I feel generally better taking the vitamin D. Less fatigue and run-down feelings.

mushroom Proficient

Mine was recently tested at 49 :) I started out (at 29) taking 50,000 every week, now take 50,000 once a month, with some extra 2000's thrown in during the month when I think about it.

love2travel Mentor

I take 5,000 IU of D3 per day and at my recent follow-up appointment was happy to discover my values are smack dab in the middle of the normal range (after taking them six months).

anabananakins Explorer

I'm taking 10,000 IU/day. But then, my blood tests were, OMG WHY AREN'T YOU DEAD YET? defcient back in May. I think I was, 12? Very low, at any rate. I feel better- fewer migraines, much less bruising. I don't know what's D and what's gluten free, but I'm erring on the side of being genetically incapable of manufacturing or absorbing this nutrient myself, since I work outside for 10 hours a day.

Wow, 12. I was 22 - my doctor was all 'you feel half dead because you are half dead!" (below 50 was too low). I'm glad you're feeling better.

I take 3000IU/day. I'm much less tired - used to feel weak, achy, run down.

pricklypear1971 Community Regular

Wow, 12. I was 22 - my doctor was all 'you feel half dead because you are half dead!" (below 50 was too low). I'm glad you're feeling better.

I take 3000IU/day. I'm much less tired - used to feel weak, achy, run down.

I was 24, range 32-100. Wow, j take minuscule amounts compared to everyone else! I guess we'll see if it works in Dec. Still walking and it's still 92 in Tucson so no lack of sun and potential D.

Reba32 Rookie

I take 1900 IU per day, (when I remember!) with my multi & supplement combined. I have noticed no difference with any of my "symptoms" since I started taking them. I don't know if my vit levels were tested at my recent annual check-up or not. I forgot to ask. I have a new doctor, and she always rushes me and I forget stuff.

saintmaybe Collaborator

Ugh, I still have no immune system to speak of. I'm pretty darn near immuno-compromised. Sinus infections with double ear infections today. I love my life. Last sick day used up to go to the PCP and get some antibiotics, which I detest. I do however, recognize their actual usefulness in real medical situations such as these.

pricklypear1971 Community Regular

Ugh, I still have no immune system to speak of. I'm pretty darn near immuno-compromised. Sinus infections with double ear infections today. I love my life. Last sick day used up to go to the PCP and get some antibiotics, which I detest. I do however, recognize their actual usefulness in real medical situations such as these.

Get a Neti pot. Best thing ever for sinuses and colds. And allergies!

saintmaybe Collaborator

Get a Neti pot. Best thing ever for sinuses and colds. And allergies!

I have one and actually used it today, but it was really acutely painful on the ears especially. I've always been told when that's the case, stop. And run, don't walk, to your nearest doctor. I'm all about GMO, organic, antibiotic free AMAP, but I am also a trained scientist. Antibiotics are sometimes necessary to continuing good health. I'll knock out the bacteria, then rebalance the intestinal flora, which are still a work in progress anyway.

pricklypear1971 Community Regular

I have one and actually used it today, but it was really acutely painful on the ears especially. I've always been told when that's the case, stop. And run, don't walk, to your nearest doctor. I'm all about GMO, organic, antibiotic free AMAP, but I am also a trained scientist. Antibiotics are sometimes necessary to continuing good health. I'll knock out the bacteria, then rebalance the intestinal flora, which

are still a work in progress anyway.

I didn't say not to take antibiotics. Neti pots help the congestion out much more effectively and gently than blowing. It also helps prevent cracking and bleeding in the sinuses since the water moisturizes the sinuses. It also helps reduce allergic reactions during allergy season.

I've found the ear pain is usually from an angle issue during irrigation, or a blockage. If changing positions doesn't help, try again in 30 minutes. Sometimes the blockage (I know this is gross) needs to soften up to move.

If you have an ear infection I'm sure everything is painful.

Hope you feel better soon.

saintmaybe Collaborator

I didn't say not to take antibiotics. Neti pots help the congestion out much more effectively and gently than blowing. It also helps prevent cracking and bleeding in the sinuses since the water moisturizes the sinuses. It also helps reduce allergic reactions during allergy season.

I've found the ear pain is usually from an angle issue during irrigation, or a blockage. If changing positions doesn't help, try again in 30 minutes. Sometimes the blockage (I know this is gross) needs to soften up to move.

If you have an ear infection I'm sure everything is painful.

Hope you feel better soon.

Oh yeah, didn't mean to imply you had said skip the antibiotics (though some people do swear to skip them). And I do plan to try the neti pot again later tonight, after the antibiotics have had a chance to kick in. Right now, I'm going to enjoy me new knickers I bought waiting for the pharmacist to fill my prescription. My new favoritist thing in the world is well fitting clothes. :lol: :lol: :lol:

Kate129 Newbie

I take between 3000iu and 5000iu depending on how I am feeling.. My doctor also told me to take magnesium with it to help with absorption and to take it at night after dinner because it is better absorbed with fat.. He also said don't take it in the am because I am on thyroid med and he said I shouldn't take them together.. Good luck hope you feel great soon!!!

plumbago Experienced

Hello,

I'm not sure if I had any symptoms that I was aware of pre-diagnosis, and before boosting the D.

Now, I am taking 1,000 IUs daily, and one 50,000 IU gel cap weekly. I wish I could tell a difference, perhaps if I knew what to lok for.

(I also give myself Vit B12 injections, and that is it for me, supplement wise)

Plumbago

eatmeat4good Enthusiast

5000 mg a day for 6 months to get just inside normal range on blood tests.

I thought it helped with everything, sleep, digestion, depression, being able to contract my muscles properly, but then again, just being off of wheat for 6 months could have helped all those things too.

hazesdaze Newbie

My doctor prescribed me Drisdol 1.25 Mg (50,000 IU Vitamin D) To take once a week for 6 weeks and then I need to be retested and see him again.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - CJF replied to CJF's topic in Traveling with Celiac Disease
      4

      European travel with Celiac Disease

    2. - Oldturdle replied to CeliacPI's topic in Related Issues & Disorders
      7

      Lymphocytic Colitis with Celiac

    3. - Scott Adams replied to maryannlove's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Yasso frozen yogurt bars - be careful

    4. - Scott Adams replied to cristiana's topic in Traveling with Celiac Disease
      1

      UK Visitors: Award Winning Flapjackery in the West Country (and Chichester, West Sussex)

    5. - Scott Adams replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Frustrated


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,415
    • Most Online (within 30 mins)
      7,748

    CoachJanice
    Newest Member
    CoachJanice
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CJF
      Safely home from my recent trip to the UK. I had zero gut issues while traveling around this pretty country. Our tour leader was very good at making sure the 2 of us with gluten issues on our tour were well taken care of.  We often got our meals before the rest of the group and adaptations to the menu for us were well thought out and very tasty. I just wish restaurants here in the USA took as much pride in making food that everyone can enjoy. Many of the hotels and pubs we ate at had numerous options that were safe for us with wheat/gluten restrictions to eat.  
    • Oldturdle
      I am 73 years old and was diagnosed with Celiac disease, and started the gluten free diet 4 years ago.  This past spring,  I experienced sudden onset diarrhea, which was persistent for several weeks, before I had a colonoscopy.  I was told my colon looked normal, but the biopsy showed microscopic lymphocytic colitis.  I was asked at that time if I was still experiencing the diarrhea, and when I said yes, I was prescribed an 8 week course of Budesonide, which included the weaning off phase.  Budesonide is a steroid, but it is allegedly specific for the bowel, and has very few systemic side effects.  I must say, I experienced no side effects, except a couple little spots of persistent psoriasis went away.  I have one week of treatment left, and other than one loose stool very early in treatment, I have had no further bowel issues.  I was told that 80 percent of people go into an extensive, or even permanent, remission after taking Budesonide.  During the colonoscopy, two polyps were removed, and one was precancerous.  I know that colon cancer risks are higher in people with Celiac disease, so it was recommended that I have another coloscopy in five years.      Like your husband, I probably had untreated Celiac disease for years.  It makes one wonder if the chronic irritation and inflammation could lead to the development of microscopic lymphocytic colitis.  This disease is usually diagnosed in people over 50 years old, and occurs approximately in one out of every 1,000 people.        Incidentally, If your husband is prescribed Budesonide, it can be purchased significantly cheaper by using GoodRX.
    • Scott Adams
      Thanks for sharing this! Talk about frustrating! It is complicated enough to try to keep track of which products are safe, but the concept of the same product sold at 2 different stores--one that is certified gluten-free and one that isn't--that is exactly why having celiac disease is still so difficult, and it is so easy to make mistakes!
    • Scott Adams
      It's great that this business has celiac disease awareness and uses gluten-free oats! I wish more restaurants would make such simple changes, for example if Asian restaurants switched to using gluten-free soy sauce, many (but not all!) risks would be eliminated for lots of their dishes. My daughter works at a Vietnamese restaurant where the owner is keenly aware of celiacs, and he has made the switch to gluten-free soy and fish sauces. 
    • Scott Adams
      It sounds like you’ve been doing everything right—strictly avoiding gluten, managing food allergies, and advocating for yourself—yet you’re still dealing with severe pain, exhaustion, and other debilitating symptoms. The fact that your colonoscopy came back clear after 31 years gluten-free is a testament to your diligence, but it doesn’t erase the very real struggles you’re facing daily. It’s concerning that previous doctors dismissed your celiac diagnosis, and now you’re left fighting for validation while dealing with unexplained symptoms like eye pressure, skin issues, and relentless pain. Menopause and long COVID may be complicating things further, making it even harder to pinpoint the root cause. Are you sure your diet is 100% gluten-free? Do you eat in restaurants...if so, this can be a source of contamination. Trace amounts of gluten over time could explain your symptoms. Many people with celiac disease have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...