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

Back Again (This Time For My 3 Year Old)


nw0528

Recommended Posts

nw0528 Apprentice

I was a member of this group about a year ago when I was being tested for celiac. My bloodwork and endoscopy/biopsies were all negative for celiac. However, there seems to be some level of gluten sensitivity, as when I reduce the amount of gluten in my diet, my GI symptoms (severe IBS) are considerably better.

Now, here I am back again, because my 3 year old son may have celiac.

In November, around his 3rd birthday, he started having large volumes of liquid stool each day (two - four PINTS of liquid stool) and making anywhere between 8 and 20 trips to the toilet each day. We did stool samples for parasites and bacteria (negative), eliminated milk, and then all dairy (no improvement), eliminated all juice and citrus fruits (no improvement) and did bloodwork and an xray. Unfortunately, at some point during this time, my son became slightly constipated and a ped. GI put him on laxatimes, which did not work and he ended up with a complete blockage four weeks ago which we resolved at home with enemas (followup xray shows blockage gone). He is being weaned off the laxatives the GI had him on and we are switching GIs because today, at our ped. appt. to discuss seasonal allergies and the ongoing GI issues, the ped. pulled out the bloodwork results (from MARCH) that the GI had sent him and said, What about this part of the celiac panel that came up positive for celiac??? HUH? the GI told me just last week the celiac bloodwork had been fine/negative. My ped. showed me the report and it said across from one number, "consider patient positive for celiac disease." All the other parts of the panel were fine. Could be lab error - at the very least we will be repeating it (when we get to our new GI).

So right now we are weaning off of the laxatives, and waiting for the new GI consult. If bloodwork again has a section that is positive for celiac, we will be going the endoscopy route to find out for sure.

I am sure I am going to have a lot of questions to be posting in the coming weeks.

Nicole


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.

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

    • Total Members
      133,200
    • Most Online (within 30 mins)
      7,748

    TGE
    Newest Member
    TGE
    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
      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.