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

Can something besides gluten cause a positive biopsy for Celiac?

skc
 Share

Recommended Posts

skc Newbie
skc
Posted

I've been 100% gluten free for at least 6 years due to "gluten sensitivity".  My bloodwork consistently tests negative for celiac.... in fact my blood work always looks great.  I recently figured out I was iron deficient, and was told to get a colonoscopy and endoscopy.  To my surprise, the biopsy came back as Celiac!!  My question is could there be anything else besides gluten that would damage my small intestine?  I have been gluten free for too long for it to be the reason my intestines are positive for celiac.

 

  • 6 months later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Interesting, and this sounds like a trick question. So if you've been on a gluten-free diet for 6 years, can I assume that the blood tests you did were while you were on the diet? That would explain why they were negative. One must be getting a fair amount of gluten in their diet, and be sensitive to it, to have positive blood tests.

So the hard part is how your biopsy could now be positive if your diet was gluten-free? Was it 100% gluten-free? Are you sure you fully understand the diet and all the hidden ingredients? Do you eat out regularly?

Sorry it took so long to reply!

frieze Community Regular
frieze
Posted

make sure the results were actually yours..

cyclinglady Grand Master
cyclinglady
Posted

Many things can cause villi damage besides celiac disease:

https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

Many celiacs are actually seronegative.  Either you were not diet compliant or something else was causing damage.  Non-compliance is common per this study.  Gluten can be hidden in so many areas.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Posterboy Mentor
Posterboy
Posted

skc,

Cyclinglady has given you good advice.

You might also cut out dairy if you haven't already and see if you feel better... a lot of Celiac's do better at least temporarily getting off dairy for a while.

Here is the research on dairy....

https://www.tandfonline.com/doi/full/10.1080/09540100400003204

If you wan to study more about what else can be causing your villi blunting here is a good  recent study from the Mayo Clinic about this topic.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30892-3/fulltext

I also had problem with my BP medicine.

Here is a thread about it.

https://www.celiac.com/forums/topic/119462-what-else-can-cause-villi-blunting-has-any-body-had-expereince-with-losartan-and-villi-blunting/

Don't be afraid to re-evaluate any medicines you might be taking. . .it is not well known but NSAIDS can also cause villi blunting in some people.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

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):

  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748
    Eliana123
    Newest Member
    Eliana123
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      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
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      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
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      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.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.