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

I'm So Bummed


lc1333

Recommended Posts

lc1333 Apprentice

i'm so bummed. i had a positive biopsy, but negative bloodwork, my stupid doc told me i don't have celiac, but maybe i have a gluten sensitivity, she made it out to be no big deal, she even said, it's better because you don't have to be so stringent. i know she's just dumb and that i do have celiac, but part of me wanted to believe her. so, i've been gluten free, and feeling 10,000 percent better, my stomach was calm and it was really weird to eat and NOT feel that burning pain an hour later. then night before last we went to Panda Express, i thought, i'm not eating any wheat or anything, so it should be fine, i didn't eat anything breaded, just chicken and mushrooms and white rice, i thought i was safe, but no, the next day everything made me sick, dinner gave me the usual bad cramps, not full on D, but crampy and the burning was back. i just looked at their website and saw that what i ate had wheat in it, they don't offer any gluten-free foods other than white rice. today my gut is settling back down, but now i know i must be vigilant, not just non-chalant about not eating blatant wheat foods. i feel like i really do have celiac and i am so bummed, i thought maybe i was just being paranoid of hypochondriac-ish or something, but no, i really do have to be careful...i'm so bummed...

:(


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

You're right--your doctor is DUMB and you have celiac. Thank goodness, you're smart!

YoloGx Rookie

By all means tell your doctor about your reaction. Maybe the fool will learn something. Good for him or her to know in case you ever get stuck in a hospital for instance or you need special accommodations on a cross country airplane trip. Or if you need special gluten free medicine. Plus it might help the next person down the line.

Bea

Metoo Enthusiast

By all means tell your doctor about your reaction. Maybe the fool will learn something. Good for him or her to know in case you ever get stuck in a hospital for instance or you need special accommodations on a cross country airplane trip. Or if you need special gluten free medicine. Plus it might help the next person down the line.

Bea

Ditto this! I would tell her. Print out information about diagnosing celiac for her, and how biopsy IS a diagnosis of celiac. She needs more information clearly.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,681
    • Most Online (within 30 mins)
      7,748

    Donna Ybarra
    Newest Member
    Donna Ybarra
    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

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.