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


MommyL

Recommended Posts

MommyL Rookie

I do not have celiac but I recently got my vitamin D tested through Direct labs and was 21.9.

1) How low was your vitamin D when it was tested?

2) How much vitamin D do you take?

3) How long did it take for your vitamin D to go up after supplementing?


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



Celiac.com Sponsor (A8-M):



Dixiebell Contributor

Hi. Mine was 16.7 (range 32.0-100). My Dr. put me on 50,000 units once a week for two months and then I took 4,000 units a day for about three months now I am down to 1,000 units a day. At my last visit she said I was in the normal range now.

Simona19 Collaborator

Hi! I just got back my results yesterday.

I had: Vitamin D, 25-OH, total 31 referance range: 30 to 100

Vit D, 25-OH, D3 31

Vit D, 25-OH, 02 <4

Note: 25-OHD3 indicates both endogenous production and supplementation. 25-OHD2 is an inbdicatore of exogenous souces such as diet or supplementation. Therapy is based on measurement of total 25-OHD, with levels <20ng/mL indicative of Vitamin D deficiency, while levels between 20ng/mL and 30ng/mL suggest insufficiency. Optimal levels are > or = 30 nag/mL.

My doctor told me that I need to take Vitamin D supplement 1 000 units for the three monts, and I should be ok. He would retest me after that.

I hope that this will help you some how.

jststric Contributor

I'm thinking mine was 17. My doc simply had me start taking 4000 units/day. I haven't been retested as it was just discovered in the past month. Is this a normal symptom of being gluten-intolerant? I am also a 51 yr old woman going thru the change. I assumed it was due to that. Maybe a double-whammy? I know my mood seemed to noticeably pick up after starting to take the added D.

MommyL Rookie

I'm thinking mine was 17. My doc simply had me start taking 4000 units/day. I haven't been retested as it was just discovered in the past month. Is this a normal symptom of being gluten-intolerant? I am also a 51 yr old woman going thru the change. I assumed it was due to that. Maybe a double-whammy? I know my mood seemed to noticeably pick up after starting to take the added D.

Glad to hear you all have been tested. I went through Direct Labs for $69 (those of you who are intrested plus you can get 10% off if you search Direct Labs coupon). My understanding is that many people are deficient in vitamin D and it plays an important role in preventing cancers, MS, autoimmune, and osteoprosis. I think those of you who have celiac should really consider checking your vitamin D and everyone else as well as it is an important vitamin.

blissfully-unaware Rookie

Mine is 14.4 (normal range is 30-100).

My doctor gave me a shot of vitamin D. I'll get another test done in 3 months and based on the results, he'll decide if I need another shot. He said that it'll take a long time for my vitamin D level to increase if I take oral tablets... he felt it's best to take the shot.

MommyL Rookie

Mine is 14.4 (normal range is 30-100).

My doctor gave me a shot of vitamin D. I'll get another test done in 3 months and based on the results, he'll decide if I need another shot. He said that it'll take a long time for my vitamin D level to increase if I take oral tablets... he felt it's best to take the shot.

Wow that is low! Glad he gave you a shot. Take care. Enjoy some sunshine :)


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Mine was 17 also (range 32-100) and was put on RX vitamin D 50,000 iu capsules once a week and I am still currently taking this dosage. I was retested at 3 months and it went up to the minimum range. I have had labs over the last 1 1/2 years since I started taking it and I am now at 64.2. My GI, endo and gyn all recommended me staying on it year round and like to see the level between the 50-70 range.

blissfully-unaware Rookie

Wow that is low! Glad he gave you a shot. Take care. Enjoy some sunshine :)

Thanks :D

In fact, I have been going out in the early morning sun after seeing my results!

frieze Community Regular

Thanks :D

In fact, I have been going out in the early morning sun after seeing my results!

i dont think the early morning sun is going to do you overmuch good.....10-20 minutes of FULL sun a day, i think is the idea.....

Linda L Newbie

I agree with Frieze, but it depends where you live. I'm in Maine, USA and I've read that you need direct sun on clean (no sunscreen) skin between 10am and 3pm. Unfortunately, it only works here between May and September (different experts give different time frames). In the winter the angle of the sun prevents the right rays from reaching us. At all. I have osteopinea, so although my Vit D test was 39.5, my PA has me taking 50,000 units weekly for 8 weeks to see if I can get my numbers up because of the relationship between Vit D and calcium absorption. (Some researchers think the "normal" range of 30 or above is too low for optimum health and we ought to be trying for 50+.)

sb2178 Enthusiast

2007 : 15

50,000 IU/ one weekly for 12 weeks

retest: 72

daily: 1200 IU

2010: 32 (and this was when I was doing lots of mid-day gardening, too... bah!)

new dose: daily 3200 IU

blissfully-unaware Rookie

Well, I usually go out in the sun around 8am for 10-12 minutes. I stay in Dubai where we have full sun (no clouds) for 350 days of the year!

I always thought that going out in the sun between 10am and 3pm would increase the risk of skin cancer?

jststric Contributor

Well, I usually go out in the sun around 8am for 10-12 minutes. I stay in Dubai where we have full sun (no clouds) for 350 days of the year!

I always thought that going out in the sun between 10am and 3pm would increase the risk of skin cancer?

It does. I suspect the sun in Dubai is completely different than we are used to here in the States. My doc recommended the supplements over spending time in the sun because she figured in the fact that most people use sunscreen these days (or should, which would lower the Vit. D exposure also. I have to admit I'm surprised at the amounts many people are taking here.

anabananakins Explorer

I do not have celiac but I recently got my vitamin D tested through Direct labs and was 21.9.

1) How low was your vitamin D when it was tested?

2) How much vitamin D do you take?

3) How long did it take for your vitamin D to go up after supplementing?

1) My result was 2. I haven't seen the hard copy so I'm not sure of the range but he said it should be a minimum of 50 and 70 was optimal. So 2 was terrible.

2) He put me on 3 x 1000 IU per day.

3) I don't know yet, haven't been re-tested. He said it takes a long time, a few months at least.

I live in Australia so even if I'm not lying in the beach, I still should be getting a fair amount of sun so I was really shocked how low mine was.

Linda L Newbie

To blissfully unaware: I agree that where you live on the planet determines what time of day is best for getting sun. Doing a little research on the recommendations for your latitude is extra important. The options for those of us living in very northern and southern latitudes is limited to certain months and times of day. The closer you live to the equator, the bigger your "window of opportunity" would be. Certainly 8am could be the safest time of day for you to collect some natural Vitamin D, but do be careful to limit your exposure without sunscreen.

SaraKat Contributor

Mine is 60 and I was just dx'd with celiac by blood test 2 weeks ago. I guess that hadn't gone down yet.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.