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

Cd For Life?


jams

Recommended Posts

jams Explorer

I am wondering if someone can give me some insight on celiac disease.

I struggle with people not understanding that celiac disease is for life. I recently had my gallbladder out. I cannot even tell you how many people (not drs) tell me that I should now be cured!! It took a while to try to explain celiac disease to my friends/family and now I am starting all over again.

Does anyone have a way of explaining that celiac disease is for life? I also have people asking me if I will go into "remission". They figure since mine (at least symptoms) was brought on by pregnancy that it should go away after a while. I get so frustrated that I give up on an explaination. That is not good either. People need to understand what it is.

Any help would be greatly appreciated!!

Thanks!


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



Celiac.com Sponsor (A8-M):



stef-the-kicking-cuty Enthusiast

Yes, celiac disease is for life. There is no cure. I mean other than sticking to the diet.

A few days ago Kaiti explained very good to some of her friends, that she can't eat the pizza by puring something over it (i think it was cleaner or something) and then scraping it off. Just like her friends did with the cheese on the pizza. And then she offered them the scraped of pizza to eat. I found this quite funny. I think it's a good way of explaining this, because "normal" people can't eat cleaner for life :P , just like we can't have gluten. So this would be a good explanation. I always ask people, if they can have rat poison. I they say no, I say: "See, this is what gluten is to me."

tarnalberry Community Regular

Have you tried explaining that it's genetic? Perhaps that will make it easier for them to understand that it's permanent.

KaitiUSA Enthusiast

As Stef said..I did a visual for my friends that seemed to work quite well. So if you talk until you are blue in the face and they don't get it then try a visual.

Let them know this is an autoimmune disorder and you were genetically predisposed to this. Let them know there is no cure and gluten will tear up your intestines and if you choose to ignore it then you knock yeard off your life and pose a threat to get serious illnesses.

pmrowley Newbie

The other thing you might want to try, is describing the exact nature of celiac disease.

Check out this topic; there's a very succinct description that another member uses to explain her condition (and now I do too!) With that description, people tend to realize that it's a serious condition, and that it doesn't just go away.

Open Original Shared Link

-Pat

Archived

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

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

    • Total Members
      133,204
    • Most Online (within 30 mins)
      7,748

    JaymeC
    Newest Member
    JaymeC
    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.