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Member Since 08 Jan 2012
Offline Last Active Jun 12 2015 11:32 AM

Topics I've Started

When Having Celiac Is Awesome

30 August 2014 - 08:14 PM

Usually we have our gripes. It's this or that, and in general it makes life at the very least a bit inconvenient for us. I realized tonight though that sometimes it's a small blessing in disguise. I'm getting ready for comic con this week and they don't allow any outside food... except for people with food allergies, intolerances, etc. So, instead of being out of the house for 12-16 hours a day for 3 days and being forced to buy overpriced food from vendors I get to bring all my own food without paying a fortune. Which means I can spend all the money I saved up on cool stuff! So sometimes, just sometimes, having celiac is awesome. B) I saw those food prices at the April con, not something I'd want to pay. A cup of coffee was $3! The food just omg. You'd have to have $75-100 to feed yourself, spend a lot of time hungry or leave and eat off site for three days. :ph34r:

Chobani Flips

24 April 2014 - 09:40 AM

We have a Smith's store by me that has a Free Friday download every week. Which means once a week they have a coupon I can get for a free something. Last week it was for Chobani Flips, and I was pretty excited since I love Chobani. I was less excited when I saw the run with wheat warning on the package. I bought one without gluten ingredients just in case then let it sit in my fridge from Friday until yesterday and finally called the company. I wasn't letting it go without a fight.


I didn't ask them to tell me it was okay to eat, I know better than to ask something so moronic. I asked a simple housekeeping question that I knew should have a simple yes answer. Do they clean thoroughly between runs of different flips products. She was sure they did, but put me on hold to double check and came back confirming that yes they do. I knew it was still a risk because no company is ever perfect, but I ate it anyway. I've always ended up with nearly immediate symptoms when I've gotten hit, it takes less than 30 minutes for me to need a bathroom. It's tomorrow and I still feel fine. So, I will say that this is something that doesn't necessarily have to be avoided if someone doesn't want to. Of course, eat at your own risk because my experience may not be your experience.

Awesome Service Experience

15 April 2014 - 07:55 AM

Yesterday was a day from hell for me. I spent hours on the phone dealing with insurance and social security disability crap. Plus I got stepped on, on my bad foot, by a kid in the social security office and spent the rest of the day feeling like my foot was broken and a step away from tears. And yet, the errands needed to be done, scripts picked up, etc... so I did what needed to be done before going home and collapsing into a useless heap in bed. 


But I made my last stop on the way home the grocery store for some things for dinner and necessities. I was making chili last night and was out of corn meal and wanted corn bread. The store didn't have any Bob's (or any other gluten-free brand) so I checked the regular brands on the shelf out of desperation/curiosity and none were labeled gluten-free. I was about to walk away but thought hell, I'll call on the store brand one because WHY NOT! It was late in the day so I wasn't even sure I'd get a person on the phone but I did. He was super friendly, mentioned someone had asked earlier about the white corn meal and it listed gluten but checked on the yellow and it did too. Then he was all, but it shouldn't, that's stupid, it has no ingredients that should have gluten. I told him that maybe it's a manufacturing thing. He said that when that's the case it almost always said "may contain" not that it does have it. Then he shocked me right down to my toes. He said, maybe it has corn gluten and that wouldn't be a problem would it? He could check with their nutritionist on what's up with the product to see if it's safe and what's up with why it's labeled like that.  :blink:


I couldn't believe some random dude on the phone just said that to me! I waited patiently, but their nutritionists had all gone home for the day. I'll get an email or a call back about it soon. I told him I couldn't believe how helpful he was and how amazing he was. I was so grateful. He told me he has a friend who has RA whose doctor told them to try being gluten-free and it changed their life so knowing all about it is super important to him. I actually teared up a little. 


More of us need friends like him. And more customer service people need to be as knowledgeable as him. He really made my day from hell just a little better, even if I didn't end up with cornbread with my dinner.  :wub:

Party Cake... Peeps!

24 March 2014 - 10:53 AM

I know I promised to be good after I did all those horrible things to my body to get a confirmed diagnosis for my pain. But I was in Wal-Mart last night to do the last of my shopping for my surgery and walked past the Easter candy, because candy, and there were all the Peeps just staring at me. And there were party cake flavored peeps!!! I suddenly had the self control of a toddler and they came home with me.


For anyone who has seen these and thought about getting them.






20 March 2014 - 03:54 PM

I got my confirmed diagnosis today, CRPS. I'm a ball of emotions. For 5 years I've been trying to get doctors to tell me what's wrong. I've had them tell me to take pills for the pain, that a diagnosis doesn't matter. I've had them tell me I'm depressed. I've been told it's all caused by anxiety. I've been told it's somatization. (I won't make you go look that up, it's being so batsh!t crazy you physically manifest symptoms.) Five. Long. Years. In that time it's gone from just my foot and ankle to be two entire limbs. A doctor saw me, in his office once, with my leg swollen so much up to the knee that it was literally rock hard. He wanted to give me meds and send me home, he wasn't worried about what was causing it. I was even once told by a neurologist, a specialist who should be able to diagnose this disease easily that I don't come close to fitting the profile. After I explained to him what both "CRPS" and "RSD" stand for. <_<


I literally feel like the inside of my skin is burning. Every moment, of every day, for five years. And they dismissed me. Doctor after doctor sent me away. I literally went into offices sometimes and begged for help, crying. I just wanted it to stop. And they called me nuts. It is such a relief to finally have a doctor listen, and tell me I have a real, honest to God disease doing this to me. And even though I've wanted this for so long, it's scary as hell to know that I'm facing this forever. The best I can hope for is "good" days with less pain and to prevent it from spreading. It's also difficult not to be mad. I don't know mad at what exactly, but mad because people with autoimmune diseases are prone to CRPS. And I started this road before my celiac was diagnosed, and it was caused by an injury from falling off the curb in front of my house which happened because of my ataxia. From celiac. I'm 36, and i just want to scream that it isn't fair!


I need to go to PT but I need to go to someone who has experience treating PT and can do aqua therapy in a heated pool. And the place my doctor wants me to go to isn't covered by my insurance, so now I get to spend the week before my surgery calling every PT place in the area, then finding which of the ones that can do it is the best for me.


Anyway, mostly I think I'm probably ranting. Although any helpful suggestions are awesome. I know #1 at the top of my list is to get the heck back on my low histamine diet before I go fling myself off the highest cliff in Utah. (at least it would be a beautiful view this time of year :lol:)


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