This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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.
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...
I knew this was a questionable area and haven't located an exact answer on the forum here, but I just found out a little bit more tonight at a sushi restaurant in Bellevue, WA.
Awhile ago, I discovered there is a rice vinegar that contains a gluten ingredient. I can't seem to find that now, but will keep looking.
In the meantime, this restaurant wouldn't let me get nigiri sushi (on rice) because they use mirin to make the rice. I can't find a mirin with gluten in it so far, but what they told me is that they cut it with soy sauce (or it comes that way?). It gives it more flavor and mirin is expensive, so it reduces cost. The manager said 99 percent of sushi restaurants use mirin and not rice vinegar. I'm not sure that's accurate, but it gives me pause and it explains why some people get sick when they eat sushi.
I don't know if that means they always cut mirin with soy sauce, but I found evidence of this method with this recipe here: http://www.streetdirectory.com/food_editorials/cuisines/asian_food/how_to_make_inari_sushi_at_home.html
(oops. Correction. This recipe is not for sushi rice, so I'll still be looking for more evidence that this is the case)
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.
I'm pretty sure I've now been glutened twice by Trader Joe's products that were made in shared facilities. How can I know what products I can try? I really don't want to be so vigilant. Once, I marinated chicken with their Romano Caesar dressing. SICK. Very sick. Then, I ate their black bean chili... also made in shared facility with wheat. Again... SICK... and on my birthday too.
How do you decide? I want to stop being cross-contaminated, but making everything from scratch is hard with my schedule.
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...
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...
I've been reading and searching and asking since I've started ditching stuff from my household and this is one topic I can't seem to get a straight answer on.
What IS the deal with this stuff? I read on the forum somewhere that one of the moderators/admins said he didn't think vitamin e from wheat would be a problem (although don't quote me on this) - something to do with the process? I read in many places I should be worried. Cosmetic companies don't seem to know where it comes from half the time or whether it's been CC'd. I also find it's in a LOT of stuff.... cause vitamin e is awesome. I saw that the amount per gram of vitamin e in wheat is way more than other sources, thus probably easier to get?
What are you all doing about this? I've discarded hundreds of dollars in kitchen and bathroom stuff with wheat and cross-contamination. Several of the things not yet discarded have nothing else but tocopherol/tocopheryl acetate in them. Trying to save my last $10 so I can buy a loaf of gluten-free bread.
I don't have Crohn's, but have a couple friends who do. They tend to eat gluten free when they're having flare-ups, but said that honestly, when they're having a flare-up, it doesn't matter what they eat, it doesn't get better. And when they're NOT having a flare-up, it ALSO doesn't matter what they eat. Seems frustrating. One of them used to take the medication, the other one currently does. The meds can be dangerous though as I'm sure you know.
Have you tried taking glutamine and probiotics regularly? They could help you heal and stay healthy. My doc has me doing both right now since I've just finally gone fully gluten free. I would think it would help with healing from Crohn's as well.
If you're being gluten free, I would think you may have another sensitivity/intolerance. Consider: soy, other grains/corn, dairy, eggs. Do your symptoms correlate to ingesting any of these or other foods?
I'm going to keep Dr. Wangen in mind. Currently my insurance covers 100% in network, but that is going to end next year at which point, it may not be that much different to see someone out of network. I'll wait and see.
I keep hoping there's a Peter Green type doc here, but it doesn't seem there is.
I'm glad you mention this! Particularly for young girls to read. It really is true. I think someone who's been your boyfriend/husband for awhile and is persistently not accepting your needs on the Celiac front is a candidate to be kicked to the curb. But I think as we all know, it's hard to accept some of the requirements of this disease... even for ourselves, much less for someone who's never been sick from gluten, much less anything. The idea takes some getting used to and a lot of science talk that isn't very sexy. I'm definitely not going to require a date to be Celiac. If I limited myself to that, I'd die alone. It's hard enough to find a guy that I'm compatible with.
Another thing people who have been in relationships for awhile have forgotten is that when you have only a few dates with each other, there's not much to go on... and you've already been high maintenance around meals and kissing, the prognosis can't look good from the other person's perspective. It's hard to see all the great things past all the toothbrushes and it's easy to ditch out for something easier. You're not invested yet.
So, you're right... and this will be especially hard for teenagers and college-aged kids who are insecure by definition... and whose dating prospects are inexperienced and will not 'get it' right away. Even the nicest guy may not get it right off. I didn't. I need to find the right disclosure plan for dating. Perhaps I pick a place to eat where he's unlikely to come in contact with much gluten when first kisses could be the outcome. Something like Sushi where he's unlikely to have breadcrumbs still lingering.
Hi, Does anyone know of a 'real' celiac specialist in Seattle? I know about Driscoll... and he's not what I'm looking for. He told me not to worry about my Celiac because I had a biopsy after a month on GFD last year and it was clear. I had records in my hand from Columbia 2004-2006 (from when I lived in NYC) which stated a Celiac diagnosis (although 'mild' compared to a lot of people here). I used to see Suzanne Lewis at Peter Greene's office, but now that I'm in Seattle, finding someone with that level of expertise is tough. There are many GI specialists who list Celiac in their areas of expertise, but they really aren't. My biopsy was done at Polyclinic and then I saw Driscoll as a backup. The doctors in both of those places told me I didn't have to be eating gluten since it had only been a month on GFD. I need someone who is well-versed on the neuro symptoms because my gut symptoms had faded over the years and all I had was neuro (BAD) when I saw these docs. They really didn't know anything about it.
My primary is a great ND and she seems to know a lot, but I much prefer my experience at the Celiac Disease Center at Columbia. <spoiled>
Any recommendations would be great. Or maybe some great doc can move to Seattle and start a research center!
There is actually this guy here, Dr. Wangen, http://ibstreatmentcenter.com/ - but he doesn't take insurance and I'm hoping to find an MD to compliment my ND.
Everyone here has good answers for your questions. The one thing I'll respond to is about the alcohol. I have no idea for sure, but I have lost my ability to tolerate alcohol. This happened BEFORE I was gluten free though... in the last couple years. I have read that this can happen with leaky gut (which is effectively a damaged gut that allows stuff to leak into your bloodstream that's not really supposed to). This is a likely effect of the beating your intestines have taken. My point though is that I think the alcohol is going into your bloodstream in a different way. I can't find research on this at the moment, but my hope is that when I'm all healed up I'll be able to have a couple drinks without being sick for the next 2 days.
Oh. And the guy is really nice so far - I think he is understanding-ish... but when you're not attached to someone, wouldn't you rather date someone who doesn't have a thing like this? Like he doesn't drink because he's in AA... and I'd probably rather be with someone who doesn't have that, right? It's just hard to drop bombs on people you're new to dating - and 'brush your teeth before you touch me' is kind of a bomb to drop. It sounds like I'm being uptight and frankly crazy. I don't know... maybe this guy would ask me to brush my teeth after having alcohol.
I am finding there are a TON of people who have never even heard of Celiac which surprises me.
So, since I didn't have any gluten, do you all think I probably got the stomach ache from the guy's 'filthy' mouth?
How do you know what's causing issues for you when there are other variables like foods or cosmetics that may be giving you problems?
Do you think people who don't get symptoms in the same situation are just not as sensitive or not as aware of what's happening in their bodies? My only GI issues were stomach cramps and bloating, but it's been many years since that was a regular occurrence. My Celiac got bored in my intestines and went for my brain and adrenals.