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

Info Appreciated

katbaloo

Recommended Posts

katbaloo Rookie
katbaloo
Posted

Hello...brand new to the forum. My 15 year old, special needs, Type 1 diabetic daughter has recently tested positive for celiac despite being completely asymptomatic. "gold test" done last week. At the risk of sounding like I've got my head firmly in the sand, can anyone tell me if you've ever heard of blood tests being positive but biopsy coming back negative.

She's already dealing with so much that I guess I'm 'grasping at straws'. Will gladly embrace the gluten-free lifestyle with her if need be but...still curious.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Hello...brand new to the forum. My 15 year old, special needs, Type 1 diabetic daughter has recently tested positive for celiac despite being completely asymptomatic. "gold test" done last week. At the risk of sounding like I've got my head firmly in the sand, can anyone tell me if you've ever heard of blood tests being positive but biopsy coming back negative.

She's already dealing with so much that I guess I'm 'grasping at straws'. Will gladly embrace the gluten-free lifestyle with her if need be but...still curious.

You need to embrace the lifestyle even if the biopsies come back negative. Damage can be patchy and there is a lot of small intestine so it can be easy to miss. There are also forms of celiac/gluten intolerance that can really do some damage to other body systems long before the villi are damaged. No matter what the outcome of the biopsy you should do the diet strictly for at least a few months. Even asymptomatic celiacs have a high risk of many cancers and other autoimmune problems. Gluten is also a neurotoxin that can effect learning and behavior as well as moods.

katbaloo Rookie
katbaloo
Posted
  • Author

Thank-you for such a knowledgeable reply! Based on what I've foind out so far, the gluten-free lifestyle sounds healthier even if you aren't celiac.

We were first told of DD's positive blood test 08/08/06 and I've been doing some 'research' ever since. Only this week did I come across this forum. Thank-you to all who participate. I feel so much less "alone" (if that makes any sense!)

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank-you for such a knowledgeable reply! Based on what I've foind out so far, the gluten-free lifestyle sounds healthier even if you aren't celiac.

We were first told of DD's positive blood test 08/08/06 and I've been doing some 'research' ever since. Only this week did I come across this forum. Thank-you to all who participate. I feel so much less "alone" (if that makes any sense!)

You have found a great place for info and support. You may be surprised at the changes you see after a time. I know I was, I never realized how much was impacted till it wasn't any longer.

Your not alone and it can be overwhelming at first but it is so worth it in the end. The diet has been shown to have a positive impact with diabetics also, just watch the carbs in gluten-free specialty food. I'm type 2, the meds scared me so I am totally diet controlled and haven't had a morning reading over 95 in six months.

Joanne11 Apprentice
Joanne11
Posted

Hello,

Two of my blood tests came back possative, and my biopsy came back negative. I have had a very possative response from the gluten free diet. I am not sure if I have celiac or just have gluten intolerance, but either way the diet is the same. Everyone here is very helpfull and there is tons on information for new people.

Archived

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

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


  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748
    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.