Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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):
    GliadinX

    Celiac.com Sponsor (A1-M):
    GliadinX

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My villi are still flat after a year and a half of going gluten free

Susie0402

By Susie0402
in Coping with Celiac Disease

 Share

Recommended Posts

Susie0402 Apprentice
Susie0402
Posted

I had endoscopy Wednesday and the GI guy told me my villi are flat and unhealthy.  I have totally eliminated gluten from my diet and followed his directives at all times.  I was diagnosed with celiac disease in March, 2020.  That was when the pandemic began.  My husband died later on in the year.  I had the endoscopy due to chronic diarrhea issues.  My brother is telling me that I am somehow digesting gluten without knowing it.  My biopies come back in a few days.  Help.  Susie

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Smith & Truslow

Celiac.com Sponsor (A8-M):
Daura Damm

yuluyouyue Contributor
yuluyouyue
Posted
On 10/9/2021 at 8:25 PM, Susie0402 said:

I had endoscopy Wednesday and the GI guy told me my villi are flat and unhealthy.  I have totally eliminated gluten from my diet and followed his directives at all times.  I was diagnosed with celiac disease in March, 2020.  That was when the pandemic began.  My husband died later on in the year.  I had the endoscopy due to chronic diarrhea issues.  My brother is telling me that I am somehow digesting gluten without knowing it.  My biopies come back in a few days.  Help.  Susie

 

I have seen on this forum that for some people oats as well as cassein in dairy can trigger the same AI reaction as gluten. Perhaps you can try to eliminate these (if you haven't already) and also triple check if you are not still consuming gluten. Do you have a gluten free household?  Are you eating out?

Scott Adams Grand Master
Scott Adams
Posted

I agree with @yuluyouyue, also, be sure to go through this article in detail to make sure you're not getting gluten in your diet or via other ways. The most common way is eating out at restaurants, or outside your home:

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):
    Food for Life


  • Member Statistics

    • Total Members
      129,611
    • Most Online (within 30 mins)
      7,748
    Kimberly 1971
    Newest Member
    Kimberly 1971
    Joined
  • Celiac.com Sponsor (A20):
    Skout Organic

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):
    GliadinX


  • Celiac.com Sponsor (A21):
    Holidaily Brewing Co.


  • Upcoming Events

  • Posts

    • Alibu
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Alibu · Posted

      I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive.  I also found out through 23 and me that I do have the HLA-DQ2.5 gene so I thought it would be good to repeat given my ongoing symptoms. Well my blood work came back with a ttg-iga level of 152.6 with a reference range of <15 and my EMA was positive and EMA titer was 1:10 with reference range of <1:5. I guess I'm nervous that I'm going to do the biopsy and it's going to be negative again, especially since I also had an endoscopy in 2020, not to look for celiac but just as a regular 5 year thing I do because of all my GI issues, and they didn't see anything then either. I have no idea how long the EMA has been positive but I'm wondering if it's very recent, if the biopsy will show damage and if so, if they'll say well the biopsy is the gold standard so it's not celiac? I of course am doing all the things to convince myself that it isn't real. Do a lot of people go through this? I think because back in 2017 my ttg-iga was elevated but not a huge amount and my EMA was negative and my biopsy was negative, I keep thinking this time it's going to be different. But this time my ttg-iga is 152.6 with reference range <15, and my EMA was positive. BUT, my titer is only 1:10 and I keep reading how most people here had a ttg-iga in the hundreds or thousands, and the EMA titer was much higher. So now I am convinced that it was a false positive and when they do the biopsy it'll be negative.
    • trents
      Found coffee or coffee pods that contain gluten

      By trents · Posted

      Welcome to the forum, @linnylou73! Are you claiming this based on a reaction or based upon actual testing?
    • linnylou73
      Found coffee or coffee pods that contain gluten

      By linnylou73 · Posted

      Sams club membermark columbian coffee is either cross contaminated or the pods contain gluten
    • KimMS
      Helping child go strict gluten-free and concerns about growth/height

      By KimMS · Posted

      Thank you! Very helpful.
    • Scott Adams
      Helping child go strict gluten-free and concerns about growth/height

      By Scott Adams · Posted

      This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way: It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.
×
×
  • Create New...