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Anxiety

BamBam

By BamBam
in Coping with Celiac Disease

Recommended Posts

BamBam Community Regular
BamBam
Posted

Hi,

For the last twelve years I have had lots of stomach pains, diarrhea, accidents etc. I am feeling a lot better now that I am gluten free. But I still get anxious when I travel, or when I know the bathroom is a long distance away. My husband travels a lot with school kids, and I would just love to go with him, but the fear of having an accident keeps me from going anywhere. I will travel with him, but am afraid to travel with other people, having an accident is just so embarrassing. Do we ever get "regular" again?

BAM

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darlindeb25 Collaborator
darlindeb25
Posted
<_< its an irrational fear that you may not ever get rid of--i know i panic when i dont know where the bathroom is or i am where there isnt one and i have been gluten-free for over 3 1/2 years--it's because we have been through so much before going gluten-free and we still dont trust our bodies---its a trust that doesnt come back easily---i do have very good days where i can go without knowing where each bathroom is along the way----maybe with time you will feel safer---it's hard, i know--i live it too--we do get regular, but sometimes that irrational fear will make us panic and then we have to go--its a vicious cycle for us---try talking to yourself and reminding you that you will be fine----i have to do the driving, i can ride with my boyfriend, but only him, no one else--i know i havent helped you, but i have reminded you there are others of us out here that feel the same way----i do have good days--more good then not :lol: deb
MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

I am still suffering from that anxiety. I went to therapy and started anti-anxiety medication after my dignosis. It really helps a lot!

KaitiUSA Enthusiast
KaitiUSA
Posted

I still have anxiety as well. It's alot better then before but it's still there. Once you try things a few times with success you will trust your body more. I went to therapy and they told me it was a fear of what might happen since so many times I have went to do things and started not feeling well and I was just expecting something like that to happen.

I started on medications but I eventually was able to get off of those pills thankfully:)

Good luck:)

Guest Viola
Guest Viola
Posted

Yes ... anxiety is a real tough one to get rid of. I have been gluten free for about 17 years, and still have some of those problems. I think maybe because every time you start to get comfortable you run into a contamination. I think what helped me the most is a few, very close friends getting me out of the house for short periods of time, to start with and then extending the time. They even helped me find the bathrooms :D I am probably more confident than a lot of Celiacs now, but that comes with time and the fact that I'm very careful what I eat for two or three days before an important outing. Well ... I'm always careful, but before an outing I never try anything new and go back to the very basics. Hope this helps some :)

Guest Viola
Guest Viola
Posted

Oops ... I forgot. If it's an un-planned event, and I start getting nervous about it and of course, we all know what happens when we get nervous and tie up those stomach muscles, then I take my old friend "Imodium". It's got me through more than one occasion :lol:

Merika Contributor
Merika
Posted

It is so nice to hear that I am not the only one suffering from this! Before diagnosis, I had a career counselor psychologist (?) say it sounded like i had agoraphobia. At first I thought she was nuts. Then i realized i was nuts, lol.

I found a book at the library that was very helpful with anxiety called "Fearless Living: (something more...)" by Judith Marquart (sp?). It's also available from Amazon. Come to think of it, I think I may check it out again....I'm in need of a refresher :)

btw, does anyone have any advice on how to help dh's deal with this sort of thing? Mine is very understanding, but still....feels limited in going places sometimes, though tell him to go solo or whatever, if i just don't feel well. I may post this over in the "friends of" section...

Thanks,

Merika

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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    • lizzie42
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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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