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

Dd Had Scope Done This Morning


ptkds

Recommended Posts

ptkds Community Regular

My 14 month old dd had her scope and biopsy done this morning. They had to poke her 4 freakin' times to get the IV in. I was fine until the 3rd try, then I just started crying along with her.

Anyway, the dr saw ulcers in her stomach. We even got pics :unsure: .He said her intestines look somewhat ok, but he is pretty sure she has Celiac disease. He told me to put her on a gluten-free diet right now. So we should know something for sure from the biopsy in about 2 wks. My MIL is still saying it might not be Celiac disease, but I think it is just wishful thinking and she needs to accept reality! :P

On a sidenote, we stayed at the Ronald McDonald house last night since the hospital is nearly 2 hrs away from our home. Let me tell you, it was wonderful. They were the sweetest ppl, the place was wonderful, and they had TONS of food, though not 1 thing was gluten-free. So if you ever need to stay in one, don't hesitate. If you can afford to, donate to them. What they offer is fabulous. They had a bulletin board covered in pics of preemie and sick babies whose parents stayed there. It was very touching. And we saw 1 little girl who had a feeding tube in her nose. I don't know what was wrong w/ her, but I do know that it was a blessing for her and her family for them to stay so close to the hospital. Just my 2 cents!!

ptkds


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
My 14 month old dd had her scope and biopsy done this morning. They had to poke her 4 freakin' times to get the IV in. I was fine until the 3rd try, then I just started crying along with her.

Anyway, the dr saw ulcers in her stomach. We even got pics :unsure: .He said her intestines look somewhat ok, but he is pretty sure she has Celiac disease. He told me to put her on a gluten-free diet right now. So we should know something for sure from the biopsy in about 2 wks. My MIL is still saying it might not be Celiac disease, but I think it is just wishful thinking and she needs to accept reality! :P

On a sidenote, we stayed at the Ronald McDonald house last night since the hospital is nearly 2 hrs away from our home. Let me tell you, it was wonderful. They were the sweetest ppl, the place was wonderful, and they had TONS of food, though not 1 thing was gluten-free. So if you ever need to stay in one, don't hesitate. If you can afford to, donate to them. What they offer is fabulous. They had a bulletin board covered in pics of preemie and sick babies whose parents stayed there. It was very touching. And we saw 1 little girl who had a feeding tube in her nose. I don't know what was wrong w/ her, but I do know that it was a blessing for her and her family for them to stay so close to the hospital. Just my 2 cents!!

ptkds

I am so glad that it is over for you. It is so strange for me to know that a 14 month old can have ulsers. But, an so glad that you have some answers.

I have a friend who is in Washington DC, who heads up the McD's Houses and has been a help to another family here at Celiac.com. It's good work and they are dedicated. It is hard sometimes to imagine what is behind closed doors sometime.

They are a wonderful group for support.

Archived

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

  • 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):
  • Who's Online (See full list)

  • 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.