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):



    Celiac.com Sponsor (A1-M):


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

Confusing results


Mmar

Recommended Posts

Mmar Newbie

Hello! I have been Celiac and following a strict gluten-free diet for over 20 years. I recently had an endoscopy/colonoscopy for chronic diarrhea that I’ve had for about 6 months. I was diagnosed with microscopic colitis. However, my doctor is also concerned that the endoscopy showed villous atrophy in my small intestine. This is confusing because my ttg-iga was 6.7 a few weeks ago! My doctor is sending me for more thorough labs, but I am wondering two things: 

1. is it possible that I am ingesting gluten with a ttg that low? I am very diligent, but the doctor implied that the finding was due to me ingesting gluten. 

2. Does anyone know of other things that can cause villous atrophy? I was under the impression that the ttg antibodies were what caused it, but if mine is low, what could be causing the atrophy? 
 

thank you!


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

 

Edited by trents
Scott Adams Grand Master

If you eat out at restaurants you might be getting gluten in your diet. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

  • 2 weeks later...
Wends Rookie
On 8/9/2024 at 12:24 AM, Mmar said:

Hello! I have been Celiac and following a strict gluten-free diet for over 20 years. I recently had an endoscopy/colonoscopy for chronic diarrhea that I’ve had for about 6 months. I was diagnosed with microscopic colitis. However, my doctor is also concerned that the endoscopy showed villous atrophy in my small intestine. This is confusing because my ttg-iga was 6.7 a few weeks ago! My doctor is sending me for more thorough labs, but I am wondering two things: 

1. is it possible that I am ingesting gluten with a ttg that low? I am very diligent, but the doctor implied that the finding was due to me ingesting gluten. 

2. Does anyone know of other things that can cause villous atrophy? I was under the impression that the ttg antibodies were what caused it, but if mine is low, what could be causing the atrophy? 
 

thank you!

Hi. Yes villous atrophy can be caused by something else. In children it is well known to be caused by milk protein and soy protein as well as gluten, in those susceptible. It can also be caused and temporary to a gut infection in some. In the context of celiac disease it’s possible you may be unknowingly ingesting gluten - and that’s always what doctors will first suspect, it only takes tiny amounts and depends on your individual sensitivity. If you eat any packaged gluten free food there was a study showing levels of gluten are present in them at varying amounts but most within the “gluten free” Codex allowance of 20 parts per million; but some above. Depending on sensitivity this may or may not be a problem for most celiacs. But for some that rely on packaged foods the dose can add up over time - think gluten-free cereal for breakfast, gluten-free sandwich for lunch, gluten-free pasta for dinner etc. Also if you’re a coffee drinker this could be a source of cross contamination of gluten - instant coffee, or coffee from an outlet depending on handling and what the machine has come in contact with. Alternative milks such as oat can be problematic in this situation. There’s cases in the UK of “glutening” because non gluten-free oat milk was used before on a machine 😳 .

If gluten free is strict and it’s not likely unknown ingestion, The other possibility is cross reactive foods. The body can recognise similar proteins/peptides similar to gluten. Casein in milk and dairy is known for this, approximately 50% of Celiacs are reported to react to milk like gluten. Then there are approximately 20% of celiacs that react to non-contaminated certified gluten free oat cereal as if gluten. There is also a study from Mexico showing maize / corn prolamins can be recognised by some celiacs as if gluten. It can be a bit of a rabbit hole and really depends on genetic susceptibility and ancestral history. The research shows different gluten peptides react with different genes (DQ2 for example is the highest risk and likely because there are far more reacting peptides than compared to DQ8 or rarer alleles).

Hopefully you are guided by your doctor to figure it out. If you consume dairy? There are a few case reports of celiac children reacting to milk as well as or instead of (milk intolerance) and villous atrophy remained until the dairy and or gluten was eliminated. Most were also asymptomatic on the gluten free diet and it was only because of repeat endoscopy and blood testing they investigated. 

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    2. - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    3. - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    4. - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

    5. - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,278
    • Most Online (within 30 mins)
      7,748

    Pinkwells19
    Newest Member
    Pinkwells19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
×
×
  • Create New...