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

Retesting Once On gluten-free Diet


Ladycates

Recommended Posts

Ladycates Apprentice

Hi! My son's GI ( a new one) wants to test for Celiac again since he was never tested besides during his colonoscopy ... but tests were inconclusive. He does test + genetically (my husband has it) BUT he also has Crohn's disease. So, Dr. really wants to make a definitive testing during his next scope in October. He wants me to give my son (6) gluten for the next 2 months and then he will take another biopsy. Is 2 months long enough to get any results blood wise and scope wise? He said that if he does start to show symptoms, he'll scope him immediately, so we can put him back on diet. He's actually a REALLY good Dr and he's spent sooooo much time with us and REALLY wants to give us 100% answers so we can move on.

So.... 2 months .... long enough?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It should be but keep in mind that he can still have a false negative. If he needs to be on the diet I don't think he will last that long though and if he doesn't it is very likely the results would be negative. How he feels and acts when you add gluten back in is IMHO a much better indication of whether he should be gluten free than the tests.

Ladycates Apprentice

It should be but keep in mind that he can still have a false negative. If he needs to be on the diet I don't think he will last that long though and if he doesn't it is very likely the results would be negative. How he feels and acts when you add gluten back in is IMHO a much better indication of whether he should be gluten free than the tests.

I totally agree with you. We plan on staying gluten free regardless of what the rest says. It's more to see if he will test + for it. If he does, then that will give us a different perspective on whether or not he has the Crohn's too (which is rare to have both ... 1 in 150,000) ... not sure if any of this makes sense. I was just curious if 2 months would be long enough to show up in the intestines ... I know it may not take that long .... ;)

Ladycates Apprentice

Well, I guess we won't make it the 2 months. 2 hours after he ate his first meal of gluten, he was throwing up. :(

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      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
      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
      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.