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

Maybe I Had A False Negative?


MinKat

Recommended Posts

MinKat Newbie

I have had an ongoing list of Celiac symptoms for the last 14 years, and 6 years ago a Kinesiologist performed a muscle strength test... he declared me allergic to wheat, and told me to only eat what "my ancestors" would eat... nuts, fruit, veggies, meat... That seemed like just too much for me to handle at that point (I was 18)... However things have gotten progressively worse, and I felt like I was going around living with all these issues, that there was no concrete reason for.

My doctor tested me, via the blood tests for Celiac, even after I had told him I had been gluten free for 6 weeks. My results came back negative... He said the antibodies would still be present, and that if I had it it would be positive. Why would our bodies keep making an antibody it didn't actively need?

I feel like, although my husband is super duper supportive and has thrown himself into being as gluten free with me as possible, that maybe I am "forcing" him to do all this, for no reason. Is there any chance of this being a false negative, or am I just being too hopeful?

Help please!!! <_<


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
I have had an ongoing list of Celiac symptoms for the last 14 years, and 6 years ago a Kinesiologist performed a muscle strength test... he declared me allergic to wheat, and told me to only eat what "my ancestors" would eat... nuts, fruit, veggies, meat... That seemed like just too much for me to handle at that point (I was 18)... However things have gotten progressively worse, and I felt like I was going around living with all these issues, that there was no concrete reason for.

My doctor tested me, via the blood tests for Celiac, even after I had told him I had been gluten free for 6 weeks. My results came back negative... He said the antibodies would still be present, and that if I had it it would be positive. Why would our bodies keep making an antibody it didn't actively need?

I feel like, although my husband is super duper supportive and has thrown himself into being as gluten free with me as possible, that maybe I am "forcing" him to do all this, for no reason. Is there any chance of this being a false negative, or am I just being too hopeful?

Help please!!! <_<

The blood tests for Celiac are not as reliable as we would like. There is some talk these days that the ranges that we consider positive is too narrow.

Many here are self diagnosed and feel quite comfortable with that conclusion. A dietary response is also an accepted diagnosis. You can test yourself by being as close to 100% gluten free as possible for a couple months and then do a gluten challenge for a couple of weeks. You may find your answer.

My husband does not feel deprived since I cook gluten free. He has his bread, cereal and pasta and I have mine. We eat well. ;)

Archived

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

  • 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
      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.
    • Scott Adams
      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.