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

Still Here Lurking, Still Waiting, Still Terrified, Still On Emotional Rollercoaster, But Monday Its Over


MsCurious

Recommended Posts

MsCurious Enthusiast

Hi everybody,

I've been popping in every few days, keeping tabs on how everybody is doing with testing, etc... and trying to get through the waiting period. I'm starting to feel a little anxious, and scared about all the changes coming down the pike. Testing is on Monday, so just a couple more days of waiting, and then I will go gluten free.

That is something I have been sort of "ignoring" because it doesn't seem real yet, but I know I should start cleaning out the cupboards and getting ready for the change. I'm a little terrified... still... of the biopsy and of course the results, and even more terrified of my dad's health situation. He's such a great guy and my mom takes such good care of him, and they have been through so much trying to deal with all that he's going through, but sadly I believe, much of it stems from undiagnosed celiac disease for decades... probably a lifetime. His ataxia is so bad that he fell four times last week, and its so hard for my little mom to be trying to get him up off the floor. I've suggested to her that he be tested, since his symptoms are so pronounced, but I think they are so tired of testing, and so fearful of more bad news, that she doesn't even want to hear what celiac disease is. It makes me so sad, because, he could at the very least stop the progression of the sypmtoms and possibly reverse some of them.

Ugh... so much on my mind, and really nobody to talk to about it. I just sit here with tear filled eyes, wondering if all this testing and waiting will give me answers, for both me and my dad... and a few other family members. I have been trying not to post, because it all is so repetative. Everybody's stories are so similar, and I feel so much compassion and empathy for everybody and what they have gone through, and continue to go through. I only hope I can stay as strong and positive as so many of you have.

It's funny... I'm normally such a strong and positive person, and this whole thing just terrifies me so much. I'm not sure why... because I know I can go gluten free and I'll be fine. I think its just that my dad's health is going downhill so fast, and I feel like I know something that would help him, but I "won't be heard"... its like having my hands tied while I watch in vain.

Anyway, sorry to unload, yet again... just feeling the need to talk with people who understand. Thanks for being there for me... I don't know what I would have done thus far without the support of the wonderful people here. Hope everybody's journeys to answers are going well. Sorry for the mini-meltdown.


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



Celiac.com Sponsor (A8-M):



Igg postive Rookie

MsCurious, We have gone through so much together. I think we started on the forum about same time. You really have been encouraging to all of us and the articles you have found really changed my life. Remember you have a big family here. Keep us updated you your situation.

MsCurious Enthusiast

MsCurious, We have gone through so much together. I think we started on the forum about same time. You really have been encouraging to all of us and the articles you have found really changed my life. Remember you have a big family here. Keep us updated you your situation.

Thanks so much Igg... its been a rough day. Yeah, we have been going through a lot together, haven't we? There are several of us who started this testing process about the same time... and it seems like such a long time ago. I'm so happy that I could make things even a little easier for you... not that any of this is easy by any stretch of the imagination. Sweet of you to respond... I don't feel so alone... thanks for that. I'll be sure to let you know what comes of the testing on Monday.

Thanks again... for your kind words. They sure gave me a little lift, and I really needed that today. Its amazing, how little effort a kind word takes... and what a difference it can make in someone's day. :)

goodnews Apprentice

You are definitely not alone...and you are down to the homestretch. Monday is right around the corner. I just had my endoscopy Wednesday and should hear back today or Monday with the results. I started gluten free yesterday...it was bittersweet. Excited to start and possibly feel better but mentally was a little harder than I thought it would be grocery shopping. And I am suddenly going through doubt that it will help at all. But today is a better day. Good luck to you Monday and glad you are a part of this group and that we can be here to support eachother and be there for eachother through our emotional rollercoasters!

MsCurious Enthusiast

You are definitely not alone...and you are down to the homestretch. Monday is right around the corner. I just had my endoscopy Wednesday and should hear back today or Monday with the results. I started gluten free yesterday...it was bittersweet. Excited to start and possibly feel better but mentally was a little harder than I thought it would be grocery shopping. And I am suddenly going through doubt that it will help at all. But today is a better day. Good luck to you Monday and glad you are a part of this group and that we can be here to support eachother and be there for eachother through our emotional rollercoasters!

Thanks a bunch goodnews. We're just about at the same point... I will be gluten-free on Monday... and yeah, I think its already starting to sink in... that bittersweet feeling. It's odd, how some days there's no doubt at all, and some days you just wonder... I guess its because it seems so odd that something that causes so much trouble can be fixed with a change in diet. That sounds so easy, but in reality its a big adjustment. I guess we have to be just glad its an easy fix compared to some things. I think my emotions are so up and down right now because of so many things, but I'll get through it just as you will...and hopefully in a month we will look back on this time, and think... it wasn't so bad after all. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,682
    • Most Online (within 30 mins)
      7,748

    Amber1rose
    Newest Member
    Amber1rose
    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.