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

I Am Confused And Looking For Opinions


jstopka

Recommended Posts

jstopka Newbie

Hi...

I had posted on here about three weeks ago about having a blood test that showed certain levels, along with a low vitamin D level, requesting that I get a biopsy to confirm if I have celiac.

Well, I got the biopsy and the results were negative, along with no anti-flamatory symptoms that come with celiac.

I spoke with my primary care physcian and he said that I should assume I have celiac due to the blood test and that the biopsy only takes a part of my intestine so he may have missed it.

So then I called the doc who did the biopsy and he said he believes I really don't have it....

so my wife and I are very confused....we have gone about for the past two weeks changing my diet and such, and don't know what to believe anymore.

Is the blood test more accurate than the biopsy, cuz everyone that I have spoken with said the biopsy is the best way to test for celiac.......is there any other explanations out there....I just don't know who to believe....

I want to do one more blood test which would mean going off the diet and hammering th wheat again to get a decent blood test, or should I just assume I have it.....

My wife and I have two contradicting reports and don't know what to think.......

If anyone has heard of a similar experience, or has any opinion that would be awesome!!!!!

thanks for your time

jeremy


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hi Jeremy,

I certainly understand your confusion. Consistency is new to the medical world regarding Celiac and it's associations.

I don't recall your blood work results, but if you doctor considered it positive, that in itself is a diagnoses. A biopsy can confirm that diagnoses or establish a diagnosis. Neither are as accurate as we would like at this time.

If your blood work was positive and you have a positive dietary result, I would remain on the diet and consider yourself to have a diagnoses of Celiac Disease. As your doctor mentioned, biopsies can be hit or miss.

Hope this was helpful.

jstopka Newbie
Hi Jeremy,

I certainly understand your confusion. Consistency is new to the medical world regarding Celiac and it's associations.

I don't recall your blood work results, but if you doctor considered it positive, that in itself is a diagnoses. A biopsy can confirm that diagnoses or establish a diagnosis. Neither are as accurate as we would like at this time.

If your blood work was positive and you have a positive dietary result, I would remain on the diet and consider yourself to have a diagnoses of Celiac Disease. As your doctor mentioned, biopsies can be hit or miss.

Hope this was helpful.

Yeah, either way I am prepared to deal with a new diet and all...here were my blood test results....

IGA, Serum 669H

Gladin Antibody IGA 38 H

Vitamin D 17L

where as my TTG Antibody, IGA was <3 which put me on the negative range for that part of the test

My doctor who saw the test said the low vitamin D was another indicator...so I am just wondering where to go from here......am I in the early stages so I should act accordingly, or should I just go back to the way I was and see what happens? I am just confused.......I hope those numbers made sense

thanks again to anyone who has an opinion on this

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,476
    • Most Online (within 30 mins)
      7,748

    Wen2626
    Newest Member
    Wen2626
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fabrizio
      Dear Scott,  please check the link https://clinicaltrials.gov/study/NCT05574010?intr=KAN-101&rank=1 What do you think about it?
    • Scott Adams
      KAN‑101 is still very much in development and being actively studied. It has not been dropped—rather, it is advancing through Phases 1 and 2, moving toward what could become the first disease‑modifying treatment for celiac disease. https://anokion.com/press_releases/anokion-announces-positive-symptom-data-from-its-phase-2-trial-evaluating-kan-101-for-the-treatment-of-celiac-disease/ 
    • knitty kitty
      Thiamine interacts with all the other B vitamins.  Thiamine and B 6 make a very important enzyme together. With more thiamine and other vitamins available from the supplements your body is absorbing the ones you need more of.  The body can control which vitamins to absorb or not.  You're absorbing more and it's being transported through the blood.   It's common to have both a Thiamine and a Pyridoxine deficiency.  Keep taking the B Complex. This is why it's best to stop taking supplements for six to eight weeks before testing vitamin levels.  
    • badastronaut
      Yes I took a supplement that had B6 in it, low dosage though. I've stopped taking that. B1 doesn't affect other B vitamin levels? 
    • knitty kitty
      Have you tried lip balm made from tallow?  It's been used for thousands of years and works better than those with waxes. I prefer Vintage Traditions brand tallow balm products.  
×
×
  • Create New...