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

Sensitivity Levels Among Us


SuperMolly

Recommended Posts

SuperMolly Apprentice

When I was diagnosed with celiac disease 2 years ago I was told I was "lucky" because I can feel the effects of gluten when I ingest it. My dietician told me there are many celiacs who have no symptoms from gluten and that can be even more dangerous because it still damages the body.

What are your thoughts on this?

How come some with Celiac Disease react to trace amounts of gluten and others don't?

Do we all have the same amount of damage in our bodies because we all have the same disease, regardless of our varied reaction levels?

There is so much I still don't know.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Latent or silent celiacs can be suffering just as much damage to their bodies as those who have raging GI symptoms. Not everybody expresses their intolerance through the digestive tract. Some have only neurological symptoms and have migraines and gluten ataxia and are diagnosed even with MS. Some just end up with Hashimoto's thyroiditis or diabetes. Some of us have milder digestive symptoms that are dismissed for a lifetime as IBS and we end up with such things as psoriatic arthritis (me) and it is too late for a gluten free diet to reverse it.

Those with GI symptoms are more likely to recognize a reaction to trace amounts of gluten, but GI reactions vary greatly in their intensity. Those whose symptoms are not expressed that way do not get that sharp warning. That is why you were told you were lucky. It is not possible to quantify the amount of damage to our bodies caused by gluten, because we are still learning the ways in which gluten damages our bodies. There is so much still to know.

dilettantesteph Collaborator

I wonder the same thing. I am sensitive to the 20 ppm acceptable limit. Does that make me more or less likely to have hidden damage?

DougE Rookie

Hi SuperMolly,

Thanks for asking this question. I am one of those with Celiac who does not experience significant symptoms. I rely on others to tell me if certain products are safe. Otherwise, I have no way of knowing. For example, I am told that 90 percent of Celiacs can eat gluten-free oats, but I do not dare try them. How would I know if I am sensitive to them?

I do know that regardless of symptoms I still am damaging myself by eating gluten. This has raised another question in my mind... Are symptoms and damage even related? What about all of those who do experience symptoms when eating gluten? If they eat small enough amounts that they do not experience symptoms, does that necessarily mean that the amounts are low enough that they are not doing damage?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      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
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      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
      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.
×
×
  • 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.