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upsilamba

Member Since 14 Jul 2013
Offline Last Active Jun 10 2014 06:08 AM
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#918573 How Do You Deal With Waves Of Depression Post Exposure?

Posted by upsilamba on 31 May 2014 - 03:42 PM

So sorry you've between going through this, sincerely. I experience the same type of symptoms from glutening and it's incredibly difficult - honestly it's a traumatizing experience to realize that all of your emotional stability can spontaneously disappear, in a way that you're powerless to do anything about until it passes. My boyfriend tells me it's like he lives with a different person when it's hit me like that - the best way I can describe it to him is that it's like I've been thrown down a well. Everything goes dark and there's no way I can even start to pull myself out of it : (

It's led to me becoming extremely, extremely cautious in avoiding gluten - after riding this lovely ride about once a month for the first 6 mos after I was diagnosed, I'm either irrationally phobic about gluten, or I've rationally decided no risk is ever worth feeling that way, depending how you want to look at it - but since I got super strict it's only happened once (freak contamination accident). It sucks for what it's done to the rest of my life, but it is no question so much better for me to avoid going through that, as much as I possibly can.

In terms of getting through it, here are the best tactics I've found, such as they are:

With the small rational piece of my brain that still works, remind myself as often as I can that this will pass, that it's a physical reaction, and that even though I can't conceive of it in that moment, I'll feel happy and sane and positive again in a few days.

Eliminate all obligations/activities/stress that I can for those few days. Stay home from work if I can, and try not to expect anything from myself until it passes. The only thing worse than having a completely broken brain is attempting to be a productive person or deal with any kind of difficult situations while I'm stuck with it. It took a while (I'm a bit type A by nature) but I try to accept and not blame myself for respecting my limitations when this happens.

Do something mindless, to try to occupy your brain while you wait it out. Seriously, Netflix has been a godsend for me at these times. I find anything I think about while my mind is in that state gets cast in the darkest possible way, and I can end up thinking awful, very upsetting thoughts if I give my brain any rein to wander. So I try to put on a documentary or whatever show I can think of to distract myself, and just keep letting the next episode play and trying to not let myself think about much of anything until I can fall asleep.

I wish I could be more help! I guess the best thing I can say is that it does always pass, eventually, and keeping safe from gluten is keeping my brain on track too : ) I'm normally pretty balanced and upbeat and have lots of fun and joy in my life without gluten - and I've been able to keep in that place pretty well for the last 6 months. I hope you get to a safer, happier place soon too : )
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#895323 We Need To Start A Thread On Stupid Stuff Doctors Say!

Posted by upsilamba on 09 November 2013 - 04:55 PM

My first real experience with a dr (aside from check-ups) was when I broke a finger as a 7 year old and my pediatrician told us it couldn't possibly be broken because I didn't seem to really be in pain, and x-rays "weren't worth it." so I walked around with a broken finger for 6 weeks until we finally went back to see an orthopedist since it still hadn't healed...and I have to say docs have been pretty consistent in disappointing me/meeting my VERY low expectations since then : )

 

I do give a lot of credit to the PCP i went to see who thought to test me for celiac this past after I told her that I was having lots of stomach pains and trying to eat healthy by "eating lots of whole grans," whoops. But minus 1000 points for when the results came back she called to tell me i "tested positive for gluten" and that I should stay away from it for maybe a year and then "I could probably go back to eating gluten again." Thankfully I'm cynical about drs that I asked her to see the actual results, researched the tests online and emailed her back to ask if the tests meant celiac disease, and if so, doesn't that mean for life? She basically answered me back with an "ummm..." and suggested I go see some random GI who could "answer all my questions." I'm trying to get the nerve up to send her a good medical book on celiac with some passages highlighted, and a note on the inside asking her to please not give her patients advice that could kill them, in future... but I know others have had much worse experiences.

 

My slightly uplifting stupid dr story was a few years ago - after going in to an ENT to find out why i was getting constant shooting pains through my nose (not to mention sinus infections, migraines, etc), the very lovely, intelligent dr and had me do a CT that found I had a giant, POINTY bone spur stabbing into the inside of my nose. Unfortunately I moved before I could have him do the surgery to remove it, so I then shopped around 3 different surgeons who all told me that the bone spur couldn't be causing any problems for me, that it was most likely allergies or all in my head or take your pick of condesceding things Drs like to say to 22 year old women.

 

The uplifting part, though, is when I finally did find a doc who was "willing" to humor me and take out the bone spur, and I came back to tell him after how ridiculously better I felt, he looked at me and said, "Huh, maybe I should stop telling all my patients this won't help them." So, progress? Or baby steps, at least? : )


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#879767 New To Celiac - Trying To Plan For 2 Day Meeting Out Of Town?

Posted by upsilamba on 16 July 2013 - 08:36 PM

Thanks so much for all the advice! It's really wonderful to have people who've been there and learned some of the tricks/hazards to turn to while I'm still such a newbie, it's just really comforting.

 

I did end up packing some hard boiled eggs - thanks for that suggestion! Maybe I'll make muffins my goal for next time I travel. I've always loved baking, and I have a whole collection of different gluten free flours to try making blends with, but I've been too intimidated to use them so far. I think I need to let go of all my vanity about it, and let go of all my favorite old recipes, and just accept i'm going to make some things that turn out pretty weird for a while. i do miss baking for other people especially, but I don't want to inflict anything gross on them : )

 

I ended up not going to the dinner for other reasons, so that worked out alright (i ended up with a couple packets of annie's gluten-free mac and cheese for dinner, cooked with water from my hotel coffee maker, haha...hopefully I'll figure out solutions that are a little less sad for next time, but at least i'm not starving!). And I packed a bunch of snacks to supplement the salad buffet offerings here - I thought about getting meat from the sandwich bar at lunch, then watched the guy touching the sandwich bread then all of the meats again and again with the same pair of gloves on and decided not worth it...I have a feeling I'm going to have those moments a lot now.

 

And thanks for the warnings - I've been doing my best to learn all about issues like natural flavorings and "food starch" and "spices" - and doing tons of searching on my smartphone to try to find what's safe to eat (I may need to upgrade my data plan, haha). But it's made me super paranoid now! I just assume everything's unsafe until proof that seems trustworthy that it's OK. I think I need to start focusing on finding more things that I actually *can* eat. It's so frustrating knowing that some things are probably fine, but I haven't done enough research on everything yet to find out, so I'm just passing on a lot of stuff for now. But I'm cooking a lot more and trying new recipes, which really has been nice.

 

Thanks again everyone : )


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