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


MsCurious

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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.


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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. :)

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      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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