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 Leve - 4.5 -!


carolinamom

Recommended Posts

carolinamom Newbie

Hi there,

I recently had labs done because I had been feeling awful, skin eruptions, tired, sore all over and gaining weight rapidly ( I gained 23 lbs in a month) despite lots of escercise and strict adherence to my gluten free diet ( I have celiac disease and also osteoporosis). They had avoided retesting the vitamin D which was a 9 when I was first disgnosed saying I must be cheating on my diet. Topday they call me and say OMG your level is 4.5 we've never seen on this low where someone was standing....you need to start the 50,000iu therapy today.

I'm frustrated that they ignored me and tried to say the weight gain must have been my fault.

Anyone ever been on this therapy.....any thinsg to look for....I took the pill about an hours ago and I have a it of a head ache and indigestion.

:((


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



Celiac.com Sponsor (A8-M):



carolinamom Newbie

Just to clarify....yes, the level is 4.5 ...

Its under 5.0

o.O

Mother of Jibril Enthusiast

I'm sorry it took so long for your doctor to respond!! :angry:

This website has really great information about vitamin D, plus links to research on just about every aspect of vitamin D you can imagine:

Open Original Shared Link

carolinamom Newbie

Thank for your reply. I still dont get why docs in this day and age are so apt to say you must not really be sick, ya know?

Any other advice to help me cope would be terrific...or sharing your experiences or links to info on vitamin D.

Oh...I do have osteoporosis and zinc, and A deficiency as well.

Blah. Some days, I swear.

Roda Rising Star

"you need to start the 50,000iu therapy today"

My vitamin D is not as low as yours but i think it was around 17 ish. My Dr. put me on 50,000 iu of vitamin D also. I take one pill once a week. I personally have not noticed any problem with taking it. I don't follow up with either my gi or endocrinologist until April so I am assuming I am to keep taking it this way till then. I have not had a bmd done so I can't say if I have any osteopenia, etc or not. I am also overweight by about 20lb and haven't had any luck taking it off. I am starting to feel better with less fatigue, so I'm hoping when the weather gets nice to do some biking.

pele Rookie

I was diagnosed with "osteopenia" about 12 years ago and told to eat Tums. Thanks a lot, doc. In 2007 a NP tested me for Vit D. It was below normal but not as bad as yours. I started supplementing and have been retested several times. My Vit D level did not increase until I started lying in the sun in my Vitamin D suit. Fortunately I have a very private garden.

I also read here on this site that cod liver oil will get your levels up. I use about a tablespoon per day in addition to my regular 5000 units and call it sunshine in a bottle.

I hope you will get back to us in a few months and tell us about your success.

bakingbarb Enthusiast
Hi there,

I recently had labs done because I had been feeling awful, skin eruptions, tired, sore all over and gaining weight rapidly ( I gained 23 lbs in a month) despite lots of escercise and strict adherence to my gluten free diet ( I have celiac disease and also osteoporosis). They had avoided retesting the vitamin D which was a 9 when I was first disgnosed saying I must be cheating on my diet. Topday they call me and say OMG your level is 4.5 we've never seen on this low where someone was standing....you need to start the 50,000iu therapy today.

I'm frustrated that they ignored me and tried to say the weight gain must have been my fault.

Anyone ever been on this therapy.....any thinsg to look for....I took the pill about an hours ago and I have a it of a head ache and indigestion.

:( (

I just got done with that dose of D. My levels were not as low as yours, just the same the treatment seems to be the same. I doubt there are any side effects either.

I had no issues with the D and checked the ingredients and they were fine. My biggest issue was when I ran out. Quite frankly the D made a huge difference in my life and how I felt, the difference was amazing. Until I ran out. After 2 weeks of not taking it I went and bought a 2000 iu, I take 2 a day and feel much better.

For sure check out that site that was listed, Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



carolinamom Newbie

Now I'm starting to get angry...why do docs let things go for so long trying to prove something else.

All the research I am seeing says once you get to like 12 its dangerous. I'm 4.5 . 4.5!!

Sorry....I'm just not coping well. It caused rapid weight gain 24 lbs in a month and the doc tried blaming it oin my eating habits, which includes completely strict diet and a 1 to 2 mile run per day.

:((

lizard00 Enthusiast

My vitamin D was low, too; like most others, though, not as low as yours. I started taking 2500iu a day, and I saw a remarkable difference in 1 week. No other side effects. So, take the mega dose and just concentrate on getting your level back up to a healthy range.

Sometimes I think doctors have a hard time believing that we might actually know what's going on with our bodies, especially if this is not satisfied by their answer and we keep pressing for more. I always try to remember that while someone had to graduate at the head of the class, someone else barely made it through. And some choose to keep up with new information moreso than others. It doesn't make it right, it's just the way it is.

It's a pain, but if you're not happy with this one, find another one. That's what I've done-twice. It's my health, not theirs.

I have wondered, though, if doctors are increasingly being asked for rx's because of the pharm companies advertising their drugs, and telling you to ask your doctor if it's right for you without even saying what it's treating. We are a society of seeking a fix in a pill. So, for those of us who legitimately have problems and we're asking for specific tests and the such, they may see us as just another person seeking a quick fix. (That's just me playing devil's advocate. Take it for what it's worth.)

flowerchild Newbie

Hi Carolinamom

I feel your frustration.

My vitamin D level measured 5 about 8 months ago and I was put on the 50,000IU prescription twice a week plus 1000IU a day d3. 5 months later my levels rose a bit (to 15) but not into the safety range and the doctor wanted to increase it to 3 prescription pills a week plus 1000/ day.

I didn't want to do that because the prescription is so expensive (and I was already under pressure from my husband to get off it) so she told me to go to a specific pharmacy and ask for a 5000IU non-prescription D3 which they (and many) pharmacies keep behind the counter. She also said it was more absorbable than the prescription and a lot of her patients did better on it than the prescription. (so why even prescribe??)

You might ask your doctor about it. It's D3-5 cholicalciferol by BioTech. If you have a small mom and pop type pharmacy, or one attached to a hospital - they'd be more likely to carry it than a chain pharmacy.

I took the 5000IU every day for a month and now take it every other day and as of a week ago my D level had risen to 30 and I'm starting to feel wonderful - much less tired and actually energized when I exercise - something I hadn't felt for a very long time. My blood pressure and weight are both dropping and the muscle cramping and heart palpitations are almost non-existent. My hair has stopped falling out and my nails are growing in strong again. I don't know which of my symptoms were attributable to the D deficiency and which to other deficiencies caused by malabsorption, but something is definitely working. I also had low levels of calcium and B vitamins, all of which have come back up with supplementation and a gluten-free diet.

Hang in there, you'll get there. It won't happen overnight but positive things will begin to happen.

JerryK Community Regular

I just noticed this thread. My identical twin brother (who refuses to go Gluten Free) has been diagnosed with Fibromyalgia. He claims he hurts so bad he can't work some days (office job!). The Dr. has put him on Lyrica....Amtriptaline (sp)...and various other stuff trying to

help him. I keep telling him it's the Gluten in his diet....

Dr. finally decides to test his Vitamin D levels and it is less than 4. We've both had to have all our teeth crowned.......

I think now he is starting to believe me. He's taken 50,000 IUs of D per week, for a couple weeks now and says his

pain is 95% resolved.

I'd made a connection between what happened to my teeth and Gluten, but it never ocurred to me that it was vitamin D that could be

the culprit. We live in the Pac NW....where we maybe get enough sunshine 5 months out of a year, to make D, if it's sunny.

I keep on learning....

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

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

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.