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Guest Libbyk

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Guest Libbyk

Hi all-

I got some sort of contamination (could it be bacon? fresh sliced at an upscale grocery?) yesterday, and never got nauseaus, just the inescapable (for me) reaction of the runs and exhaustion and being really emotional. Nothing is really wrong, I am just a little lonely (all loved ones far away for a couple of weeks) and SO TIRED.

I have been bursting into tears since last night, and when I tried to lift my spirits by going for a run, a walk was all I could manage. I just feel like sucha big, freakin BABY. I have been gluten-free for 5 months now, and on the whole, life is wonderful. But these setbacks are are much more difficult more me emotinally than physically.

Have you found any tricks for keeping your head on straight? All I have figured out so far is to lie low and hide until I don't feel crazy anymore. I could use some ideas on how not to become so damn useless for 1-3 days after getting something...

Lib

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Not a lot... Mostly sticking to a routine, and hopefully, when your family returns, if they're understanding, they can help.

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Don't get yourself down - everyone has their days! I know I've had mine!

This probably sounds wierd, but when I get down on myself about something, I find that if I do something for someone else, I fell better - maybe it's the shift from thinking about me to thinking about someone else? Not sure really, but I know it works for me.

And if you feel too lousy to get out and DO something for someone, go on-line and help someone here! Or call an old friend, or make something for someone you love while you're stuck at home anyway.

Hope you're having a better day today!

Smile! :D

donna

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I definitely see a link between moodiness and anxiety in my celiac teen and potassium. She has had trouble maintaining electroltyes for years and just recently was diagnosed celiac. Along with moodiness she gets terrible leg pains. I am not sure if she has trouble absorbing the potassium because of the celiac disease but if I sneak her some exta OJ, cantalope or ohthe potassium rich foods her mood improves.

Can't hurt! Good luck!

Kathy

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Libby,

I think that for many of us, the emotional toll of gluten ingestion is unavoidable. A woman doctor friend of mine told me that she considers gluten to behave as a "neurotoxin" for many of us. I've been gluten-free for 3 years, and if I have a bit of gluten accidently, I'll be on the verge of tears for 24 hours. The woman who sits next to me a work has celiac and she has the exact same experience.

It helps me to know that it's the gluten doing it - it's not my life or my job or my relationships. It's just the dumb gluten. I always drink lots of water on those days , and if it's a work day, I start out the day with caffeine - which seems to counter the dull headedness of gluten.

take care and know you aren't alone!

Laurie

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After an accidental poisoning, I sometimes get really iritable like snapping at people or prone to rage at what are otherwise small annoyances. Gluten can seriously effect my nervous system.

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On Thursday I accidently ingested gluten, and by Friday morning I had my typical reaction, which is the worst headache imaginable, which does not respond to migraine medicine, and violent vomiting every 15-30 minutes, even water, both of which last for 48 hours, like clockwork, very predictable. I did not get out of bed until Sunday, and felt like I had been run over by a rather large truck (probably a gluten containing bread truck) and I still feel pretty bad. I've been gluten-free for 6-1/2 months and every gluten accident is worse than the one before, but this I know: These episodes are only a reminder of how horrible my pre-Dx life used to be, of all the things I missed out on in my kids' lives, of the needless guilt I felt for "making" myself sick, on and on. Except for these occasional lapses, I am the healthiest person I know--full of vitality , strong and happy. And I will be damned if I will let this disease take anything more away from me--a gluten accident is just that, an accident! I just pretend I have the flu and move on. My happy life started the day I went gluten-free!

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Guest LilKLJ

Hey all... I'm a 'new' diagnosee.... been learning to go gluten-free since April 1.

I knew about this board when I was going through all my testing ... and kind of scanned over it a few times... but have recently been changing jobs and getting ready to go back to school in the fall (yikes, it's been almost 5 years!)... so I kind of forgot about it...

I was having a bad morning... (well, last 48 hours or so) and somehow found my way back here...

And I just wanted to say, THANK YOU!!!

To each and every one of you who posts on here... I'm a member of a local support group, but haven't found as much emotional connection to any of them as I have to all of you on here...

Sometimes, it feels like I'm reading something I would have written myself... and right now would probably be a messy bundle of tears, if I wasn't sitting at work. ;)

I'm this strong, independent woman... who's overcome a lot in life... but for some reason... this disease is really hard for me to cope with... I know it could be a lot worse... and I know it's a 'simple' treatment plan... which is what I tell everyone (including my BF who's been a dream through all of this)... when I put on my brave face and my best smile and tell everyone it's not that bad...

But for the most part... when I'm alone and don't have to pretend anymore... I'm scared. And I have the most uncontrollable moodiness... and I'm an emotional wreck.... I just feel so 'not me'. :(

But it's good to know, that I'm not alone.

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Guest Libbyk

thanks for all of your thoughtfull responses. Lil klj, you wrote out my mind. I as well like to consider my self active, robust and energetic, but when I get sideswiped, it all goes to s@#$!@#t.

I don't mind being celiac, feeling crummy was just part of life, so knowing how to change that was nothing but positive. BUT, I get really resentful of these setbacks, because I am trying so hard. I feel like, if I am doing everything right, shouldn;t I feel as great as I want to? All the time? forever?

Lib

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Guest NitaB

Lib and everyone!

I certainly feel for you, and understand a bit of what you're going through. It is so hard to understand, when we are trying to be gluten-free, and something catches us off guard! I'm so in the learning process still, so know I'll make more mistakes.

My biggest problem is family gatherings. They know and seem to understand, and try to help with food products for me. But, it seems as there is a barbecue, meal out, picnic, or other all day activity every weekend, and is posing more challenges than I am good at yet. I know it's because it's summer, and everyone wants to get together, but is so hard for me.

I end up either eating something cross contaminated, or maybe even with dairy, that I'm yet unsure of. I haven't gotten sick, but I end up so tired for a couple of days after. Maybe I'm lucky I'm not so sick, like some of you, but no one understands how tired and down feeling I am. After father's day breakfast out today, I was so tired I wanted to nap at 10:30! I dozed a bit, then took a 1 1/2 hour nap in the afternoon. I would've slept longer, but set an alarm!

I'm beginning to think I'm nearly asymptomatic, as only got very sick after some stress at work. Anyone have any ideas about this??? I finally go to a dietician on Tues. I sure hope she can help me a lot!

Anyone else have much help with a dietician?

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I can totally relate to the mood changes during a gluten accident. I got some gluten accidently during my sons birthday dinner on the 10th. He chose the restaurant from our list of "safe" choices, and I tried something that should have been gluten-free (at least by ingredients) and the waiter seems very confident that my meal would be safe. I figured it must have gotten contaminated somewhere in the kitchen, and ended up sick for the whole weekend. It was awful, since I am an absolute grouch when I get contaminated. I feel awful and end up making everyone else miserable by yelling and complaining all the time. I can't believe I used to feel like that all the time! How did my family ever put up with me?

I had to take off a few days from being here online, since I tend to be a little incoherant and make mistakes when trying to do my moderator duties. I am still dealing with the left over DH rash and the occasional sudden bathroom stops, but my head is starting to clear and the fatigue is starting to let up a little bit. The worst part about it was that I had to continue my life as if nothing had happened, since I had responsibilities and also an extra child for the week. I just tried to pare my daily activities down to the minimum and only do the fun activities I had promised the kids. They ended up running wild around the house while I layed on the bed or couch and the house ended up very messy! I am still not caught up on the laundry or housecleaning. :rolleyes:

I hope the rest of you are feeling better.

God bless,

Mariann

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    • Posterboy, thank you sooooo much. I can’t tell you how greatful I am for your long and detailed answer. I have many additional questions (I asked you few more additional questions in my other post about celiac and reflux) I am just trying to find my underlying condition. I am afraid I’ll have to stay with ppi for two additional months, since I have esophagitis grade b, confirmed with biopsy a week ago. It was first time that I have inflamed esophagus. Last endoscopies showed only nonfunctional LES. I think this inflamarion is because od a panic attack after drinking coffee with a lot of sugar and nausea after that. Some coffees make me sick and some don’t. I would just like to find out what relaxes my LES and what is my underlying condition.  Ppis obviously don’t help, since my problema with bloating and gases and reflux are continuing. Please if you have any additional idea what could it be, tell me!!! Best, aya
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