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

Should I stop eating gluten after endoscopy before I get results?


randophantom

Recommended Posts

randophantom Newbie

Hello,

I just tested positive for celiac in two different blood panels and have a vitamin A deficiency and was referred for an endoscopy. Does anyone know if false positives are common and do people usually go gluten free as soon as the endoscopy is done? I have a one month wait between the endoscopy and seeing the GI and don't want to be damaging my body more if I have it.

Thanks.


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

False positives are not common but do happen. Yes, if the endoscopy confirms the blood antibody test, you should go gluten-free immediately. It is common for Celiacs to have vitamin and mineral deficiencies, although most of the time the deficiencies are found in the B-complex spectrum. Are you experiencing symptoms appropriate to celiac disease or is the vitamin A deficiency what led to the blood antibody tests for celiac disease?

Edited by trents
randophantom Newbie
5 minutes ago, trents said:

False positives are not common but do happen. Yes. If the endoscopy confirms the blood antibody test, you should go gluten-free immediately. It is common for Celiacs to have vitamin and mineral deficiencies, although most of the time the deficiencies are found in the B-complex spectrum. Are you experiencing symptoms appropriate to celiac disease or is the vitamin A deficiency what led to the blood antibody tests for celiac disease?

I have been have celiac related symptoms and my sister and aunt have celiac so that's why I was tested. They tested for deficiencies after the celiac panel was positive and that's when they found the vitamin a deficiency and high iron levels. 

trents Grand Master

High iron levels? Usually, with Celiac Disease people get anemic if anything. When you speak of high iron levels are you referring to ferritin or hemoglobin?

randophantom Newbie

The labs just call it iron and show that I have low UIBC and high iron saturation. The primary care I saw was thinking that it was either related to celiac or hemochromatosis. 

docaz Collaborator
2 hours ago, randophantom said:

I have been have celiac related symptoms and my sister and aunt have celiac so that's why I was tested. They tested for deficiencies after the celiac panel was positive and that's when they found the vitamin a deficiency and high iron levels. 

(I am in a different field but I would not let my patients dangle for a month before discussing a biopsy result and you might be able to speak to your doctor over the phone but still keeping your follow up appointment for a more detailed discussion.) In any case, If the celiac panel was (really) positive, it is very likely that you will have to go on a gluten-free diet regardless if the endoscopy is positive or negative and therefore it might be a good time to transition to a gluten-free diet. Vitamin deficiency can for sure be related to celiac disease but for that to happen, the intestine has to be severely inflamed and therefore it might not be related to that and must be investigated separately. High iron levels are most likely a separate condition. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,701
    • Most Online (within 30 mins)
      7,748

    MadReg60
    Newest Member
    MadReg60
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Sounds like your doctor is not very knowledgeable about celiac disease and may not be supportive of your efforts to run this down. Unfortunately, there is still a lot of ignorance in the medical community with regard to celiac disease. He/she may not even know what tests to run. Those of us who have been on the celiac journey for sometime have come to realize we need to be our own advocate and need to be appropriately assertive in order to get proper testing done. So, when the day comes for the appointment, here are some recommended tests you should discuss with your doctor that are celiac specific: At the bare minimum, the doctor should or: 1. total IGA. This test checks for IGA deficiency. If you are IGA deficient, then next test, #2 below, will give falsely low scores and may produce a false negative. 2. tTG-IGA This is the centerpiece of celiac disease testing and is the most popular test run by doctors. If  the doc is willing, ask for these in addition: 3. DGP-IGA 4. DGP-IGG 5. tTG-IGG These five tests would constitute a fairly complete celiac panel and give fuller picture. What one test may miss another may catch. Here is an article giving an overview of celiac disease blood antibody testing, the relative sensitivities and accuracies of each test. The one test mentioned in this article I did not include in my list is the EMA which is not used often anymore. It is expensive to run and has largely been replaced by the tTG-IGA. One other thing to be aware of and that is if there are positives in the antibody testing, you likely would get a referral to a GI doc who may want to do an endoscopy with biopsy of the small bowel lining to confirm the antibody testing results. You would needs to still be consuming gluten for this one as well.
    • trents
      I question your terminology. I believe "gluten intolerance" is used as a synonym for celiac disease in most circles today whereas "gluten sensitivity" is used of NCGS (Non Celiac Gluten Sensitivity) though you still see a lot of inconsistency in how the terms are deployed.
    • cameo674
      Because of my brother’s supplement regime and my and my husband’s known gene mutations, all of the kids (26,28,30 - I should not call then kids) take PureTherapro RX Methyl Multi without iron, the MagTech magnesium supplement with 3 forms of magnesium, and D3.  I am still trying to find a Fish Oil supplement for them that comes in smaller size capsules.  I take the Metagenics lemon flavored Fish Oil Epa Dha 1000mg gels and the kids call them horse pills.  They want something 1/2 that size bur don’t have a fishy taste. 
    • growlinhard1
      Thank you for the response. I didn't think of  the things you presented but they make a ton of good sense. I'm in the USA so no stipend for a formal dx. With the added cost of gluten free food, I wish there was some program to help. I bought a loaf of gluten free bread that cost $7.99 and my usual multi grain is $2.57!  I REALLY felt the doctors taking you more seriously comment. That is a huge issue. I just had fairly extensive blood work done, none of which was testing for celiac, and everything came back normal. I felt completely dismissed by my doctor even though my symptoms remained unchanged. As a matter of fact, Celiac disease wasn't even on my regular doctors radar. I think after studying the symptoms and comparing them with my symptoms that should have been one of his top differential diagnoses. I will follow your advice and wait until after the bx to begin eating gluten free. I'm fairly certain of the diagnosis at this point because 4 days of no gluten has made a difference. I feel somewhat stronger, nowhere near as anxious or irritable, urinating every 2 hours instead of every 30 minutes to an hour and much less nausea.  If anybody has any other words of wisdom, advice, really anything, please let me know..I'm kind of alone in this.
    • knitty kitty
      Yes, some people with Celiac do react to quinoa.  I know i do.  Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease. And some of us react to corn (maize) as well. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients https://pubmed.ncbi.nlm.nih.gov/24152750/   P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?  
×
×
  • Create New...