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

Blood Test And Gastroenterologist

CGally81

By CGally81
in Coping with Celiac Disease

Recommended Posts

CGally81 Enthusiast
CGally81
Posted

I went to a gastroenterologist, but I admit: I freaked out at the idea of having to eat gluten in order for any of the tests to be accurate. I asked what I could do instead of eating that poison for weeks before taking an endoscopt, and he suggested a I take a blood test instead.

I did, and he called me to say that the results came back normal, except for one thing that was slightly off, and my DNA test results are not back yet. I asked if the reason I didn't have any anti-gluten antibodies (because I tested for that), was because I'd been gluten-free so long. He said that was a possibility, and said that after my DNA results get back, he'll want to talk to me again and maybe recommend me to an immunologist, to get more conclusive results.

I really don't like the fact that you basically have to be eating gluten and letting it damage you in order for test results to be really accurate. My "hungry all the time" feeling is slowly starting to wane, and is getting better week by week, and could be gone within a month. No way do I want it to spike up again because I had to eat gluten to make my test results accurate!

I don't know... I'm going good at staying off gluten and repairing the damage done to my body, taking digestive enzymes before any remotely questionable meal or any big meal, and taking Pioneer's gluten-free vitamin/nutrient/mineral mix every day, which people have claimed helps with the hunger (it may or may not be making a difference, but my hunger is definitely going away faster). I definitely know I have celiac, or if not, then something celiac-esque. Gluten is the enemy, as I know from the times I've eaten it by accident. I'd just hate for every test to show up inconclusive, or worse, negative. Once a cure/treatment is available, not being properly diagnosed would make it difficult to convince my insurance to pay for it, even if I could convince my doctor (who believes me) to write me a prescription for it.

Well, waiting on the DNA test results and I guess I'll learn how immunologists work.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,202
    • Most Online (within 30 mins)
      7,748
    Nana Susie
    Newest Member
    Nana Susie
    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

    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.