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Member Since 14 Jul 2013
Offline Last Active Jun 10 2014 06:08 AM

Posts I've Made

In Topic: How Do You Deal With Waves Of Depression Post Exposure?

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 : )

In Topic: I Gave Up Waiting For Insurance Approval...

31 May 2014 - 03:03 PM

I was a beer snob too - although I had mostly stopped drinking it for the free years before I was diagnosed cause it always made me feel sick (mystery solved now, haha)

Congrats on the diagnosis and on finding the health food store! Ordering online is also a great way to go for products you come across or hear about and want to try - often prices are better too. Amazon and vitacost both have lots of gluten-free products.

I don't drink much at all these days, but mostly wine and cider (the aversion to beer from all the sickness it used to trigget is taking time to get over). Redbridge is terrible IMHO, no offense to those who enjoy it. Celia saison and St Peters sorghum ale are the two that are my favorites - even my non celiac beer snob boyfriend enjoys them. Tweasonale (by dogfish head) is pretty interesting if you come across it, though not something I would just knock back with a burger. Greens is pretty respectable, and I also like New Planet and Bards.

I'd caution you against any beers like Omission that are made with barley and claim to be "gluten removed" - I tried Omission and was briefly in heaven thinking I had found a "real beer" again (seriously near tears of joy), but then spent the next day with the most violently ill glutening symptoms I've ever had. There are enough decent options out there made with alternative grains that the risk is just not worth it, for me! And explore ciders - there are a lot of craft cideries springing up over the last few years that make really great, interesting ciders, and getting pushed to explore them more had been a genuine upside of losing gluten : )

For pasta, tinkyada is good, as are quinoa pastas. But my favorite are the bean pastas by explore Asia (mung bean linguini especially). They're a bit different than traditional pastas, but in a way that seems more intentional instead of like it's trying and any failing to be normal, haha : )

Good luck with everything! I hope you feel better, and find some great gluten-free meals soon! You might want to wait on the restaurant until you feel really confident on all the precautions you need them to take for you from your own experience in cooking, so that you know you're giving them good instructions. But we all find our own balances of risk that we're comfortable with : )

In Topic: Just Want To Be Able To Eat Out Like A "normal" Person!

12 April 2014 - 10:36 AM

I totally get this. I've been avoiding restaurants completely for several months now, and I doubt I'll eat at a restaurant again for a loooong time, sadly. I learned that I get just outrageously sick from any gluten contamination, for about 3 weeks, so it is just not worth the risk to me at this point. just knowing that even at a generally safe place, there's always some level of risk, is enough to keep me scared away pretty thoroughly for the foreseeable (unless it's a totally dedicated place - sadly only bakeries where i live, but i'm hopeful some real restaurants might come in soon!).


Right after I stopped going to restaurants I found this gif though - so true and it felt so good to laugh at it, at least : )


In Topic: Menstrual Cycle Becoming Irregular After Being Gluten Free?

12 April 2014 - 10:07 AM

Oh wow, so glad this topic popped up - and interested that I'm not the only one! I always had horrible periods (a bit irregular but crazy PMS involving mostly gastro symptoms - I generally had to avoid eating the whole first day of a period, or spend the day puking, not fun). So I went on a low dose birth control pill that helped to moderate those symptoms a bit (although they didn't go away entirely).


The gynocologist warned me that the pill i'm on can cause your period to disappear - but over a year on it and it never did, until I went off gluten last June. All of a sudden no more periods, except randomly over the past several months they've come back twice and then disappeared again. I emailed the gyn who told me not to worry about it, but I gotta say while missing out on the terrible PMS is not a bad development, and it's not at the top of my list of concerning health stuff, it sure is weird...


I know "unexplained infertility" is a common symptom of celiac in women so I'm sure gluten must mess with hormones etc in some way or other, but I'd be really interested if there's any good research out there on what the connection/effects actually are!

In Topic: Still Feeling Awful. All The Time.

10 February 2014 - 07:54 PM

Thanks guys! i'm having another cold and wobbly day, but at least my brain is sort of working so that feels a lot better. Here's hoping it lasts a little while this time : )


I think i definitely need to try the elimination diet and see what it turns up - I'm trying to find a good nutritionist to work with for it, so once I can get an appointment for it that'll be my next thing to take on.


the mcas thing is really really interesting - thanks for sharing that, shellie! i had a moment of total horror when i saw the "no leftovers" thing (i was like AHHH but I cook everything so HOW????), but then i saw that you can freeze stuff at least and I managed to start breathing again, haha. Some of it does seem like it might fit (the cold sensitivity/inability to get warm - and heat's definitely not my friend either, the gastro stuff, the wheezing and the joint issues...and I don't think i need to mention the brain fog and anxiety). But I've never had hives or any of the typical allergic reactions listed (seasonal/dust allergies, but nothing that bothers me too much most years).


I'm supposed to see the new PCP doc in a few weeks, so I'll print out some of those resources and see if she'll test me for it! And maybe some of that quart of blood she took last week will turn out to have some other answers, too...

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