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

Want to get diagnosed, but unable to eat gluten without becoming violently ill for days


seebeeeeeeeeee

Recommended Posts

seebeeeeeeeeee Newbie

Hello all,
So, long story short, in 2011 I started getting really really sick, with no discernible cause.  Violent vomiting daily, rapid weight gain (40 pounds in one month) unbelievable exhaustion, depression, social anxiety to the point of not being able to leave the house, hives, acne, rashes, brain fog, and my LEAST favorite, the all-over bruised body feeling you get when you have the flu (that horrible bone deep aching that makes it uncomfortable to move at all, and any clothing touching you hurts.)  Oh, and monstrous swelling of my face and stomach.
I wound up figuring out through elimination of certain things in my diet that what was doing it was gluten and dairy.  So, over the years I've cut them out (at first, after I cut them out, I was still getting horrendously sick, just less often and it took me too long to realize CROSS CONTAMINATION WAS A THING)
So fast forward to now, I'm able to function like a human again by being INCREDIBLY strict with my diet and making almost all of my food myself and NEVER taking any chances with anything that was "processed in the same facility with..." etc etc
I've also recently started going back to school, which means I have to be EXTRA careful, or I won't be able to attend classes or study because my brain, and my body just don't function when I've been exposed.
However, I've always been a do it yourself girl, so after having endoscopies and colonoscopies years ago, and having a doctor tell me I had "acid reflux" (way to diagnose the symptom, not the cause, ya jerk) and having no doctors know why I was getting so sick, and eventually figuring it out myself, I never was tested for Celiac's Disease.
So obviously, I'm scarred for life, and terrified to death of gluten and I was wondering; does anyone know of some way that I could be tested for it WITHOUT exposing myself to it?
Thank you so much in advance


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



Celiac.com Sponsor (A8-M):



RMJ Mentor

Researchers are working on some future tests for those not eating gluten, but right now you have to eat gluten to get accurate test results.

cyclinglady Grand Master

While I was diagnosed five years ago with celiac disease, my hubby went gluten free 17 years ago per the poor advice from 2 medical doctors (poor meaning not getting tested).  The diet worked.  He refuses to do a challenge.  Why do you want to get tested now when it is obvious that gluten is making you sick?  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,232
    • Most Online (within 30 mins)
      7,748

    NAA
    Newest Member
    NAA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small...
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
    • Betsy Crum
      I don't have health insurance so I have never had any testing done. I always thought if I stay away from gluten Ill be fine but I suppose that isn't enough anymore. I will look into getting an allergy test. Thank you for your input! 
    • trents
      I remember reading an article summarizing testing done by Gluten Free Watchdog on several brands of dried lentils. They were all heavily cross contaminated with wheat and the commentary was to the effect that dried lentils in general were the most heavily cross contaminated product category in their testing data base. So, I would definitely not use any dried lentil product that was not tested to be Gluten Free (<20ppm of gluten) or Certified Gluten Free (<10ppm of gluten).
    • Scott Adams
      While spices, lentils, beans and chickpeas are naturally gluten-free, the main concern with any brand is cross-contamination during processing and packaging. Since Suraj doesn't appear to certify their products as gluten-free or use dedicated gluten-free facilities, there is some risk of trace gluten exposure, especially with their corn flour which could be milled on shared equipment with gluten-containing grains. For absolute safety, I'd recommend looking for brands that are certified gluten-free by organizations like GFCO - good options include McCormick for spices, TruRoots or Bob's Red Mill for lentils and beans, and Anthony's for corn flour. That said, if you need to use Suraj products, be...
×
×
  • Create New...