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

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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,414
    • Most Online (within 30 mins)
      7,748

    Jane Margaret
    Newest Member
    Jane Margaret
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.