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

The Next Few Days Should Be Interesting


Crystalkd

Recommended Posts

Crystalkd Contributor

I wasn't really sure how to title this but I need a little support for one thing and am excited about the other and just wanted to share.

I go to my GI in the morning. This is the first time since the endoscpy that he says came back negitive but due to my diet responce my Internist thinks I do have it plus the blood test came back odd twice. (I'm going to ask for copies of the results so I can see them with my own eyes. I'm concerned about what the GI will think of the internists dx. I'll just have to wait and see I guess.

My other thing is that I'm finally feeling comfortable enough to even enterain spending the weekend more than 5 mins away from my house!! I haven't done this since I first started getting sick in Jan. It may vseem small but for me it's big because I'm getting my life back. I'm taking snacks with me that I can eat but its also comforting to know that there are a few in the group I'll be with that understand my diet first hand.

Just had to share.


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



Celiac.com Sponsor (A8-M):



Eriella Explorer

First of all-- congrats on feeling better! Don't worry about what the test results say, if gluten makes you sick, don't eat it. That is what my GI and my primary care physician told me when my blood results came back with 0 levels. If your physician is worth his or her weight in salt, they will say the same thing too. You may not be celiac, but instead by gluten intolerant (my official diagnosis, although we all have a strong suspicion that I one of those few that don't produce any antibodies, but have the autoimmune aspect), but does it really matter? No matter what the doctor tells you tomorrow, do what makes you feel better. If you can find a doctor who will support you, that's great. If not, then we will support you. A gluten free diet won't hurt you at all, so there is no risk and all gain.

A word from someone who went through this yesterday-- go in with a list of symptoms you had before, what improvements you had, and specific questions to ask (like why am I responding positively if my test is negative? What would be the benefits of retesting?). I have found that if you go in and say that you know the science says something else, but you feel better this way, doctors tend to agree and just want you to feel better.

Good Luck!

Crystalkd Contributor
First of all-- congrats on feeling better! Don't worry about what the test results say, if gluten makes you sick, don't eat it. That is what my GI and my primary care physician told me when my blood results came back with 0 levels. If your physician is worth his or her weight in salt, they will say the same thing too. You may not be celiac, but instead by gluten intolerant (my official diagnosis, although we all have a strong suspicion that I one of those few that don't produce any antibodies, but have the autoimmune aspect), but does it really matter? No matter what the doctor tells you tomorrow, do what makes you feel better. If you can find a doctor who will support you, that's great. If not, then we will support you. A gluten free diet won't hurt you at all, so there is no risk and all gain.

A word from someone who went through this yesterday-- go in with a list of symptoms you had before, what improvements you had, and specific questions to ask (like why am I responding positively if my test is negative? What would be the benefits of retesting?). I have found that if you go in and say that you know the science says something else, but you feel better this way, doctors tend to agree and just want you to feel better.

Good Luck!

This doc is a sweetheart so I think everything will be fine. I just never know these days. I have a physical disability on top of the celiac disease so I learned very early how to handle docs. This is just a doc I haven't figured out yet since I haven't been going to him long.

blueeyedmanda Community Regular

Crystal,

It is good to see you are finally starting to feel better. You have a lot of confidence in yourself, it took me long than just a few months to stay away from my home. That is great! It is nice to see you are getting on with your life. Have fun this weekend. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748

    bailey1023
    Newest Member
    bailey1023
    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

    • 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.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.