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

Celiac Gene and NCGS

ktyler44

Recommended Posts

ktyler44 Contributor
ktyler44
Posted

Is it possible to have the celiac gene and be non-celiac gluten sensitive? Or if you are reacting to gluten and carry the gene, does that give an indication of celiac? My son's blood test came back negative, but the doctor wouldn't do an endo biopsy because she said he didn't have celiac. But if he carries the gene and had symptoms, wouldn't that be a red flag? Or could he carry the gene, have symptoms, and still just be NCGS?

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
On 5/6/2018 at 7:16 AM, ktyler44 said:

Is it possible to have the celiac gene and be non-celiac gluten sensitive? Or if you are reacting to gluten and carry the gene, does that give an indication of celiac? My son's blood test came back negative, but the doctor wouldn't do an endo biopsy because she said he didn't have celiac. But if he carries the gene and had symptoms, wouldn't that be a red flag? Or could he carry the gene, have symptoms, and still just be NCGS?

Yes, he could have the gene and still be NCGS.  But did you know that some celiacs are seronegative?  Did you know that some celiacs never get a positive on the TTG (like me)?  Is he IgA deficient?

Ask for the full panel.  Then consider pushing for the endoscopy because something is wrong.  My niece had a celiac full blood panel and an endoscopy.  Turns out she has Crohn’s that was found by a pill camera.  

I do not know you full situation, but as a mother, we know when are kids are sick.  Push for answers!  Be nice and research like heck!  

chrissy-b Apprentice
chrissy-b
Posted

My sister has the gene but tested negative for celiac. She was diagnosed as NCGS so it is possible. I'm not sure what you do in that situation as far as testing goes other than to ask them to continue testing for other things as well. 

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,370
    • Most Online (within 30 mins)
      7,748
    Redred1
    Newest Member
    Redred1
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      Negative, although I had most of the symptoms of celiac disease. I now eat as if I had a diagnosis.
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      What were the results of the test?
    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • Create New...