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

Just Need An Outlet..no Reply Required!


Di2011

Recommended Posts

Di2011 Enthusiast

I had my first blood test today. Yesterday I cried off & on for about 3 hours. I just know I had a big wheat problem but the look on doctors face when I gave the family history, finishing with the bowel etc cancer, did me in.

I hope to get a positive result today.

I don't want to be sick

I don't want my 8 y/o to avoid anymore breakfasts and packed school lunch.

I don't want to itch myself crazy every evening and night with no relief.

I will go no-gluten tomorrow because despite the potential/official result I think gluten is not good for us (my son or I).

I hope for a positive and then others might play the game, otherwise I play on my own.

Thank you to everyone who adds so much great information to this forum. I can't thank you enough.


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



Celiac.com Sponsor (A8-M):



Mummyto3 Contributor

My daugther was diagnosed last week as celiac disease. She's 9. My husband and I have had our bloods done today. Still trying to decide about my two boys. My family history upsets me too when I talk about it. I have an aunt with IBS, and uncle who died a few years back who had years of problems with his bowels (to point of removing colon), my grandmother lost her fight to colon cancer when I was 5, and my cousin had bowel problems which took her life aged 21. My daughters bowel problems came around Dec last year. I mentioned to doctor after doctor of my family history but no one listened. Then we met a lovely gastro not too long ago who immediately ordered blood tests for my daugher incl. for celiac disease. Thank God for her is all I can say.

Chin up. I know exactly how difficult this is. I'm sure we can all sympathise and empathise with you xxx

Harpgirl Explorer

I had my first blood test today. Yesterday I cried off & on for about 3 hours. I just know I had a big wheat problem but the look on doctors face when I gave the family history, finishing with the bowel etc cancer, did me in.

I hope to get a positive result today.

I don't want to be sick

I don't want my 8 y/o to avoid anymore breakfasts and packed school lunch.

I don't want to itch myself crazy every evening and night with no relief.

I will go no-gluten tomorrow because despite the potential/official result I think gluten is not good for us (my son or I).

I hope for a positive and then others might play the game, otherwise I play on my own.

Thank you to everyone who adds so much great information to this forum. I can't thank you enough.

I really feel for you! I'm in the same boat, though as far as I can tell my boys seem to be okay so far. I'm impatiently waiting for my blood test results because while I know I'm going to stay away from gluten anyway because it makes me feel better, my husband has a very practical and "scientific" mindset. It would make this adjustment a lot easier if the blood test came back positive for celiac. Right now, I don't think he doubts I have it, but I think he thinks I'm a bit of a hypochondriac. :rolleyes:

JaniceS Newbie

I had my first blood test today. Yesterday I cried off & on for about 3 hours. I just know I had a big wheat problem but the look on doctors face when I gave the family history, finishing with the bowel etc cancer, did me in.

I hope to get a positive result today.

I don't want to be sick

I don't want my 8 y/o to avoid anymore breakfasts and packed school lunch.

I don't want to itch myself crazy every evening and night with no relief.

I will go no-gluten tomorrow because despite the potential/official result I think gluten is not good for us (my son or I).

I hope for a positive and then others might play the game, otherwise I play on my own.

Thank you to everyone who adds so much great information to this forum. I can't thank you enough.

I know just how you feel. I'm currently in the waiting stage. I really would like to try a gluten-free diet, but was told not to because it can mess with my test results. I don't want to be sick either, but right now I really need answers, so really any hope of telling me what is making me feel terrible all the time. Hang in there. I know lots of people are probably going through similiar things right now too. I'm just thankful I found this site too.

Archived

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

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

    • Total Members
      133,201
    • Most Online (within 30 mins)
      7,748

    Karen LK
    Newest Member
    Karen LK
    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.