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

Screened Positive On 1/3 Antibody Tests

Deb O (UK)

Recommended Posts

Deb O (UK) Apprentice
Deb O (UK)
Posted

I've just been screened for celiac by blood test and was told that I scored positive on 1 antibody - the test looked for 3 antibodies and I was told by doctor that scoring positive on 2 gives a dx of celiac. He has advised me to follow a gluten-free diet and has referred me to a dietician (still waiting). :(

If I've not got celiac disease what does this mean? Does it mean I'm gluten intolerant or is this the same as celiac disease? I have had digestive discomfort for around 20 years and this is why I went to see doctor. However, since reading up about celiac I am amazed at how many other symptoms I have particularly lethargy/ tiredness/ irritability/ prone to low mood / mood swings / aching muscles / joint pain / tingling in fingers / foggy head and probs with concentration.

I feel like I'm in a 'no-mans land' - I know I shouldn't be eating gluten, but am waiting to see dietician.

On a positive note, I'm quite excited about going guten-free as I'm inspired by reading about how many people feel so much better after eliminating gluten :)

I would welcome any feedback

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

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

It could be that you're gluten intolerant, but it hasn't progressed to the serious illness, or celiac stage. It doesn't really matter, just as long as you keep your diet under control your health will improve and it shouldn't bother you.

Chelle15 Apprentice
Chelle15
Posted

I've just been screened for celiac by blood test and was told that I scored positive on 1 antibody - the test looked for 3 antibodies and I was told by doctor that scoring positive on 2 gives a dx of celiac. He has advised me to follow a gluten-free diet and has referred me to a dietician (still waiting). :(

If I've not got celiac disease what does this mean? Does it mean I'm gluten intolerant or is this the same as celiac disease? I have had digestive discomfort for around 20 years and this is why I went to see doctor. However, since reading up about celiac I am amazed at how many other symptoms I have particularly lethargy/ tiredness/ irritability/ prone to low mood / mood swings / aching muscles / joint pain / tingling in fingers / foggy head and probs with concentration.

I feel like I'm in a 'no-mans land' - I know I shouldn't be eating gluten, but am waiting to see dietician.

On a positive note, I'm quite excited about going guten-free as I'm inspired by reading about how many people feel so much better after eliminating gluten :)

I would welcome any feedback

How frustrating! Why can they never tell you what the results mean! I came back with 2 positive markers for Celiac. But still had no idea if that meant I had it or not. It seems that no one wants to commit to telling you what is wrong. I would call the doctor and ask directly, what does this mean!

floridanative Community Regular
floridanative
Posted

Oh my the stupidity of doctors never ends does it.......I had a full Celiac panel run, which was six test/antibodies in all. I had ONE postive result for Celiac. After insisting on having the biopsy (had anemia which came out of nowhere, and some bloating) my results showed severely damaged villi. Boy was that doc's face red when he called to tell me I had Celiac. Of course I couldn't see his face but it was red, trust me. His uncomfortableness eating all that crow was palpable over the phone. I'm sorry to tell you but you probably have Celiac disease or you're gluten intolerant, which you know yourself already. Either way a gluten free diet is the only known treatment. Good luck getting answers.

jabberwife Explorer
jabberwife
Posted

hang in there. I'm in the same boat. I scored negative on blood tests and Enterolab (but I did notice that although both times, my IgA were in the normal range, the blood test showed a 1 unit read, and the Enterolab showed a 6, a year and a half later. Does that mean anything??) I did come up with 2 DQ1 genes (not the major ones for Celiac, but still predisposed) and my sister, brother, and father all have it. So....after visiting my doc, he's told me to go BACK on the diet (I did for almost a month before with some weird results, one really bad result to a bagel, but then when I went off...some IBS troubles but not dramatic problems) for 90 days. So I will. I wonder if a colonoscopy will help...but I can do a diet without having to go through that, so it sounds preferable to me!

Deb O (UK) Apprentice
Deb O (UK)
Posted
  • Author

Hi there

I don't know what DQ1 genes are, there was no mention of this by the doctor (UK) and no suggestion of further tests.

I'm just hanging about now waiting to see the dietician - I suppose I could go gluten-free on my own before seeing the dietician, but I'm kinda anxious about it, I've started to buy in some gluten-free stuff but I'm scared that when I start there's no going back and I'm not comfident that I know what to do yet.

Thanks to all of you who replied to my message! :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

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

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      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...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      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...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

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

      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—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      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 t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748
    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • 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.