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

Vitamin Deficiency Testing


Merika

Recommended Posts

Merika Contributor

I have noticed a lot of folks on this board say they are deficient in vitamin x or y. How did you all find this out? Where did you have tests run?

Other than for B12 (shots) what can be done other than time and gut healing for better nutrition? Did you find it was worthwhile?

Thanks,

Merika


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Merika,

I was wondering the same thing. Is this a standard test or what? I've only had my B12 checked. I asked my doc about vit/min screening last week and he didnt know...said he had to look it up.

-Rachel

KaitiUSA Enthusiast

The doctor can do blood tests to check for vitamin and mineral deficiencies.

If you are deficient, like I was, I found that liquid vitamins worked well because of the way they are absorbed. Also, certain supplements can help with gut healing too.

I chose a different route then B12 shots. I took sublingual B12 vitamins.

Merika Contributor

So is this just a regular MD doctor who tests for b12? Is it a blood draw into a test tube type of test?

Kaiti, how long did you take the vitamins for? Did you retest and find yourself in the normal range later? Are the sublingual vitamins of a modest portion of the USRDA of vitamins - like 10-100% or are they like health food store vitamins which often contain 2000% of a vitamin?

Thanks,

Merika

KaitiUSA Enthusiast

I'm still on vitamins and will continue to take them because I think they help boost my immunity but my levels went back to normal after getting on vitamins for a few months.

Pre gluten free I was deficient in pretty much everything except B12 because I took them sublingually before.

I got retested last August after going gluten free in January of 2004 and all my levels were back up. I was also tested again in January of this year and my levels were still good :D They still like to monitor it every now and then.

I just got a regular blood test to test for the vitamins...they may have other ways to but I got mine done through a blood test and my regular doctor ordered it done.

I am not sure of the amount of what's in the B12 vitamin but I can check..it's very small and it has a good flavor and you just keep it under your tongue till its dissolved(although I tend to chew it after it's under my tongue for a few minutes)

I guess if you are super low then shots would make sense though until you can get them up.

Let me know if I can help you at all with info.

drewsant Rookie

My Dr ordered blood tests to check for any deficiencies when he ordered the blood tests for Celiac. He knew that one of the indicators for Celiac is being deficient in vitamins/minerals. I am low in folic acid, so he put me on prenatal vitamins--which I haven't filled yet because I can't afford to until I get paid next week--hopefully they'll help to make me feel better. :(

Rachel--24 Collaborator

What is wrong with my doctor???? I've asked him for this test 3 times now and he just looks at me blankly. He has no clue what this test is...keeps saying he needs to look it up. I told him its a standard test...any doctor can order it. He said its not a test hes ever heard of. Now suppossedly he's going to ask the nutritionist about it. I'm so angry with my HMO...they cant seem to get anything right. I've seen lots of doctors and this guys actually the BEST I've seen...how sad is that! He also ordered the wrong tests for celiac disease last year and because of his mistake I never got the full panel done + he said it was ok not to be on gluten at time of testing. Anyways I'm getting out and finding a real doc ASAP. Sorry just needed to vent...anyone else having trouble getting the vit/min test?

-Rachel


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



Celiac.com Sponsor (A8-M):



emeraldskies Rookie
What is wrong with my doctor???? I've asked him for this test 3 times now and he just looks at me blankly. He has no clue what this test is...keeps saying he needs to look it up. I told him its a standard test...any doctor can order it. He said its not a test hes ever heard of. Now suppossedly he's going to ask the nutritionist about it. I'm so angry with my HMO...they cant seem to get anything right.  I've seen lots of doctors and this guys actually the BEST I've seen...how sad is that!  He also ordered the wrong tests for celiac disease last year and because of his mistake I never got the full panel done + he said it was ok not to be on gluten at time of testing. Anyways I'm getting out and finding a real doc ASAP. Sorry just needed to vent...anyone else having trouble getting the vit/min test?

-Rachel

<{POST_SNAPBACK}>

I've been having a similar problem. I've wanted my vitamin and mineral levels to be tested for quite some time, but since I haven't found anyone who will perform the tests for me, I've been leaving my body in a horrible state where I am avoiding taking any vitamins because I don't want to mess up the tests. So, I continue to get worse. Before I was diagnosed, I at least had a daily multivitamin and B-complex (and occasionally calcium and vitamin E). I feel since I have had legitimate disorders that have been repeatedly blown off, and since my body tends to have an extreme reaction to little things (for example, when I had appendicitis, I had pain in all of the expected areas, so they went ahead with the appendectomy. When the surgeon saw my appendix, he was sure it was actually healthy, so he looked around in my abdomen for our possible causes of the vomiting and pain. When they did the pathology report, they saw that I did have appendicitis, but it wasn't obvious from just looking at the organ. Also, I've had severe reactions to half the starting dosage of many meds), I need the test results to be off the scale so I will be taken seriously and believed. If I take the vitamins, I may end up not being deficient on the tests, and everyone will say, "See, we told you that you were making it up."

I am not getting any help at all, though, and in fact, I am feeling worse and worse, so I can't neglect this any longer. I researched the tests, and I found ones that I am going to order myself. I have taken several tests from this organization before, and it is pretty convenient to do so. They have an agreement with one or more clinics in many cities in each state (this is in the US) where you can go and have your blood drawn, and you can have the results e-mailed to you. There are many tests that they offer, and there are many more not listed that you can call them about to see if they have them if they are not listed on the site. Things that you should definitely have tested are the vitamins A, D, E, and K, all B vitamins, magnesium, and calcium (and maybe iron). There are also other suggestions on the site for celiac disease (such as CBC, CMP, etc, which are very common tests that doctors order all of the time for non-celiacs. It seems like your doctor is just being difficult. Doctors treat me the same way everywhere I go). Here are the recommendations for celiac disease: Open Original Shared Link

Also, here are the tests for malnutrition: Open Original Shared Link

After I get the test results back, I will start taking my vitamins again. This probably won't mess up my future bone scans because my bones are obviously curved and that's not going to change until I get treatment.

Rachel--24 Collaborator

Emeraldskies,

I'm glad you found a place to get these tests done. Hopefully you can get the results back soon so you can start to feel better. I hope you're not letting yourself suffer just so you can prove something to your docs though. Were you taking vitamins before and did you feel better? I was taking supplements but was getting worse...they had gluten and that was one of several things that led me to get retested for celiac disease. I just dont know what I need to be taking right now or if I need to take anything at all. I had to call and complain about my doctor and this usually gets some results...at least he called me back. I don't think he's trying to be difficult I just think he really does not know very much at all which is kinda scary since he IS my doctor :unsure:

Thanks for the links...I'll probably have to end up printing something out and giving it to him so he knows what tests to order. I've had to do this in the past with him. If my Enterolab comes back positive my doc will accept that as a diagnosis...I'm thinking the GI doc probably will be less enthusiastic though.

I'm sorry you're going through so much right now...hopefully you will get better soon!

Thanks again

-Rachel

Nevadan Contributor

Regarding tests and labs, I too find Labtestsonline.com to be a good source of information on specific tests. Also if you have a Quest Diagnostics Lab, Inc nearby, they have an affliate, Questest, that provides patient ordered testing in most of the states they operate in. You can view the available tests at Open Original Shared Link

George

emeraldskies Rookie

Whoops, Lab Tests Online has a lot of good information, but I meant to refer to Health Tests Direct, where you can order tests: Open Original Shared Link. Sorry about the misinformation.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,536
    • Most Online (within 30 mins)
      7,748

    EKM
    Newest Member
    EKM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Morgan Tiernan
      Hi all! Ive been away for a while navigating this new illness and also studying at university. But im back with so more updates and info, thank you all for your help and support.    Update: I suffered with an infection of my dermatitis herpetiformis a month or so ago. This resulted in a trip to a&e with an extremely swollen face, and a 2 week dose of doxycycline. Of course the infection went down but my dermatitis herpetiformis still remains to pop up every now and again. However, I’m coming up to almost a year being gluten free and I can honestly say the outbreaks are less often and more mild. But I’ve been eating extremely strict on a gluten-free diet (not much eating out and very cross contamination aware), so fingers crossed this continues.  As I am UK based, I have finally got through to dermatology and rheumatology in the NHS (no more private appointments which is great!) She was amazing and agreed on what sounds like dermatitis herpetiformis. However, she has also diagnosed me with chronic urticaria (hives) which will explain the swelling of my face, eyes, lips, and even sometimes tongue! So might be an allergy on the case, or perhaps another autoimmune condition due to the undiagnosed coeliac until this year. A skin biopsy has now been arrange for next month which is positive (there’s talks of me eating gluten for a day to activate the rash also, scary but they will have medication on site!)  Currently, I’m feeling more positive about my diagnosis and am so thankful to my hospital for the ongoing support I wasn’t able to get from my GP.  Things are looking up!
    • Morgan Tiernan
      Hi there! This is something I’ve often wondered too! I’m still going through the process of getting an official dermatitis herpetiformis diagnosis, however I’ve been battling for 3 years and the dermatologists are pretty certain it’s dermatitis herpetiformis/celiac disease with it’s classic appearance and symptoms (it’s nasty stuff!) About 2 years ago before dermatitis herpetiformis was on the cards, I suffered with a terrible episode of seb dermatitis, it was absolutely everywhere and was probs left undiagnosed for months before I could get in with a dermatologist! I used ketaconazole and it seemed to do the trick. However, knowing what we do now, the dermatitis herpetiformis was definitely aggravating/causing this and I found that it was the use of too many steroid creams (they thought I had eczema) and heavy moisturisers bothering my dermatitis herpetiformis.  Since being gluten free for a year, I haven’t really suffered with an episode of the seb dermatitis for a while. Just trying to navigate the dermatitis herpetiformis outbreaks now.  But definitely feel there could be a correlation! 
    • leahsch
      I have had very mild rosacea on my cheeks for years. I also am celiac abd have recently been diagnosed with rosacea in one eye. I have been prescribed eye drops during the day and a gel at night. 
    • JD-New to Celiac
      Although diagnosed with celiac and dermatitis herpetiformis, I was curious about the celiac genetics and had that testing done on my own. Unfortunately, the lab does not explain the results and any doctor I have asked said I would need to see someone specializing in genetics. I was hoping someone out there might help me understand. Here is what came back and although I understand the HLA DQ2 and HLA DQ8, I wasn't sure what the variants mean and why they repeat twice. Someone said it was a double marker meaning both of my parents gave me copies. I also read having this combination makes my celiac potentially much worse. HLA DQ2 - Positive | HLA DQ8 - Negative HLA Variants Detected: HLA DQA1*05 and again HLA DQA1*05 HLA DQB1*0201 and again HLA DQB1*0201
    • JD-New to Celiac
      Understanding that normal is <15, I started off with 250+, then using the same lab it took two years to get to 11, the last test was 3. So, it jumped back up for some reason which is why I suspected gluten in my diet somewhere. I do not do dairy, eggs, oats, or soy. I am vegan and gluten free, and take numerous supplements with the help of this forum.
×
×
  • Create New...