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

Whats the point of testing?


Bluegrass

Recommended Posts

Bluegrass Newbie

I feel a whole lot better have gone gluten-free. But I don't like the idea of going back on gluten for a few weeks just so I can be tested for Celiac. Is there any reason I should?


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

Well it depends, offical diagnosis can be a damn good reason not to ever cheat, and celiac gluten free is MUCH more restrictive then "Diet" gluten free....we have to have dedicated cookware, dedicated cooking areas, limit where we eat out to places have been trained for gluten free and have dedicated cooking ware/area. Crumbs, flour residue, cross contamination....any bit of it can make us sick.

Many get the offical diagnosis for various reason some can get local government assistance with food, and school plans with offical diagnosis. You know since it is genetic that family needs to be tested. IF you ever get hospitalized having it on record is great....imagine your stuck in a hospital completely out of it and they feed you gluten.

You do not have to...the gluten challenge is much worse once going gluten free. But it is highly suggested....you could always find a good doctor willing to either A. Do a shortened challenge with endoscope if you get get it done in 2 weeks. B if your have obvious and violent reactions like I did. Eat a sandwich/burger in the doctors office and let the results show....
Open Original Shared Link

mom2boyz Apprentice

I'm a nurse, and I pretty much diagnosed myself, I'm not going to test for many reasons.  First because I'm cheap, and I plan on having a nice retirement instead of spending a ton of money on multiple blood tests and endoscopies all so they can tell me to stop eating gluten.  Second, I've worked with countless doctors and it's pick and choose the right day, right time and right person whether they're going to listen to you and take you seriously or make fun of your complaining to the nurse in the hallway after they see you and take your money.  Third, I don't trust the FDA or their supplementation, medication or diet recommendations.  They've been bought out by the big food and big pharma.  Finally,  I think the entire process of diagnosis totally violates the "do no harm" motto.  Going back on gluten would be harmful.  Having an endoscopy, while it may not be harmful, it's not comfortable nor is it a risk free procedure.  It involves medication and it seems a bit over the top for something that's not an emergency.  They need to come up with something better.  I read a study coming out of Norway, and it looks like it may be a one step process pretty soon, and I'm content to wait for that.

Last, in a situation where you're hospitalized, they're probably not going to have your records right there anyway unless you've been hospitalized before, just put gluten under allergies when they ask for it.   I don't think they'll question it, I wouldn't have if I were doing intake.  It's not like the nursing staff is going to be happy about cleaning up after you, nor would they want to risk a lawsuit if they ignore you.  Gluten or any common food allergens for that matter wouldn't be an ingredient in anything they would feed you if you weren't conscious.  However, I could see a long term care facility deciding to be cheap and wanting documentation.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,037
    • Most Online (within 30 mins)
      7,748

    cbattiato
    Newest Member
    cbattiato
    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
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
    • Beverage
      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • 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.
×
×
  • 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.