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 Needed This!


Jess Harper

Recommended Posts

Jess Harper Newbie

Hey everybody! I'm a new user and could not be happier to be able to talk to people about being gluten free. I seriously needed a place to ask questions, vent, and just plain learn that I'm not the only one who's suffering around here! I have been gluten free for going on 9 months. It has been a struggle with many ups and downs. This is just a post thanking you all for being there. Willing to support and encourage each other. This is a blessing!

God Bless


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

Hi and welcome. I'm glad you found us. There are plenty of ups and downs for all of us and we're all here to share the good and the bad. My six month mark is next Saturday so I'm still kind of newish to this but thanks to everyone here I was able to get pointed in the right direction and am doing pretty well compared to a year ago.

DogWalkerNYC Apprentice

I'm new too and also glad to have a place to come for answers to my questions and concerns. I've found such conflicting points of view on different websites and it's great to find all the info I need in one place. I have an appointment with my doctor on August 16 for a routine colonoscopy and endoscopy (I'm 64) and will discuss my symptoms, all of which are responding to being gluten free. I know you have to be glutened to be tested but I can't stand the pain and feeling so sick, so I guess I won't be tested. A while ago I read a post from a doctor on another forum. She said one of the most accurate ways to determine gluten intolerance is to go gluten free for 3 months and then assess your symptoms. If you feel better it's a pretty good indicator and you should eat accordingly. If I go back on gluten just to be tested and the test comes back inconclusive or negative I would still stay away from gluten in order to feel better. I read that the doctor can biopsy a piece of the intestine that's healthy, while other parts of the intestine may have damage, so testing can be inaccurate. So is it really necessary to be tested? My doctor diagnosed me with mild gerd 2 years ago and I think he was wrong because when I stay away from gluten there's no acid reflux. In this case I trust my experience more than my doctor's education. If gluten hurts me and I avoid it and feel good isn't that enough?

sharilee Rookie

Welcome!

nvsmom Community Regular

I feel the same way, Jess! Most people won't understand what a switch this diagnosis is, and to be honest, most people do not want to hear about it! It is wonderful to come here and experience the support that comes from a common experience.

Thank you from me too! :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748

    tdouglas2901
    Newest Member
    tdouglas2901
    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.