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Member Since 12 Jul 2012
Offline Last Active Sep 29 2012 09:07 AM

Posts I've Made

In Topic: Sushi Rice Sometimes Not Gluten Free

29 September 2012 - 09:07 AM

It's true that a nice restaurant wouldn't use that 'mirin style' stuff. This restaurant is one of the nicer ones around and they use mirin to season their rice, but they cut it with soy sauce. Another restaurant I was at a couple years ago told me the brand of the rice vinegar they use (and it was a nice place as well), but that brand of rice vinegar had either wheat or barley in it. I can't recall that one. I wouldn't be so sure nice restaurants don't cut corners to save money... particularly ones that are going out of their way to make sure they have amazing fresh fish. I wouldn't expect a nice place to use this mirin style stuff, but for me, it was just evidence that there is wheat sometimes in these products... this one obviously has corn in it and is garbage.

I was hoping for more detailed info from others who have talked to restaurants about their rice vinegar.

In Topic: Sushi Rice Sometimes Not Gluten Free

27 September 2012 - 09:56 PM

Ah, here we go. This mirin has fermented wheat protein as an ingredient. (You have to click on the 'nutritional info' link to see the ingredients)
It doesn't indicate why theirs has soy sauce in it, but it's some evidence that it exists. I'm glad I finally found this. Another restaurant showed me this before and a the time I didn't know what mirin was so I couldn't find it again...

In Topic: Trader Joe's Shared Facility?

27 August 2012 - 09:00 AM

I keep thinking it can't possibly be the food from shared equipment because my TTG antibodies were only mildly elevated when they were. And I had three clean biopsies and a fourth that showed mild flattening and broadening of the villi. I can't seem to accept high sensitivity like this when the tests run on me had trouble finding it. I may have to start a new topic on this, but is there any correlation in test results and sensitivity after going gluten free? It just doesn't make sense to me.

I do a lot of planning ahead, but I planned ahead to sometimes eat things that I had decided were probably safe... like this chili. I've seen the comparisons to help visualize 20ppm and I can't quite get how a half can of chili was contaminated by any more than that. I guess I have to practice my acceptance, but I am working through some other food intolerances and I guess I was hoping maybe it was something else... or that I got contaminated from the salad bar at my office. Those were the only things I ate that weren't prepared in my kitchen and I purposely stayed away from the parts of the salad bar that were near gluten foods. I'm 95% positive it was the chili though because every time I get glutened, my stomach starts grumbling loudly after I've eaten the food and then the next morning is when the serious symptoms kick in... many trips to the bathroom, fatigue, dizziness and depression.

Live and learn...

It would be nice to have a database somewhere that we can all report getting cross-contaminated by packaged foods that are supposed to be safe. I guess the manufacturer can change over time though and it wouldn't be a guarantee. I know there must be safe foods though. I'm not quite sure how to find out if the chili is made next to a line that uses flour or whether it's way across the facility in another section. Or, everyone can stop eating gluten for us. :)

In Topic: Real Celiac Specialist In Seattle?

30 July 2012 - 10:24 AM

My issues are severe enough that I'm not sure my ND is going to be enough. I had severe neuro complications. I'm not sure if Dr. Wangen can help me to the degree I need either. Part of me wants a celiac specialist from one of the centers to tell me that what I've been experiencing the past few years can all be attributed to untreated celiac. Even though I've found a lot of evidence, I'm having a hard time being confident that I can control and recover from what has happened in my brain. I keep thinking something else is going to come out as an issue that is undiagnosed.

The other part of me thinks I have to be an example that a research center would want to document and understand... so I'm considering getting an appt and flying somewhere to a research center. Has anyone done that? Traveled to a specialist?

What about Dr. Wangen here in Seattle? Does he know much about the neuro stuff? Or is he just good with the gut? I would go see him even though he doesn't take insurance if I could just get some guidance or reassurance...

UGH, I'm so frustrated right now.

In Topic: What Happened To Me? Could Celiacs Have Caused All Of This?

30 July 2012 - 10:10 AM

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...

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