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mrsry

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About mrsry

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  1. While I was at Whole Foods last night, I thought I would try to see if I could get something like cake to eat on my birthday later this week. I went up to the bakery counter and asked if they had anything gluten-free resembling cake, and immediately heard a couple next to me saying loudly, "Could you imagine?" "Wouldn't that suck so bad?" "I would rather kill myself." They were almost snickering. And it only got louder when I was told that my only option was pie. By then I was so angry at that couple that I turned down the pie and walked away. I wish I had gotten up the courage to turn around and say to them that yes it DOES suck once in a while, but do I look like I should die? What kind of thing is that to say in front of someone? If they think not being able to eat cake is the worst thing that can happen to you... Anyways, I have a lot of options! I have some gluten-free cornbread mix; I might make some mini-muffins with maple butter. Or I could get a Korean rainbow rice cake, which has beautiful stripes and would look great with candles. The Korean tradition is to eat rice cake on one's birthday instead of cake.
  2. I'm not as knowledgable as I should be on lactose/casein, so I can't help you rule that out. But the pain that radiates to the back is definitely something I've had before. It really baffled my doctors, who tried treating me for different things but it just wouldn't go away. Finally, after I started being more conscious of gluten, I noticed that it happened during a particularly miserable glutening. Now that I am more careful I am free from that kind of pain, for the first time in years.
  3. My sister in law is having a bridal shower with cupcakes as the centerpiece for each table! I mean, does it have to be that much in our face? I almost wish I hadn't been invited so I wouldn't have to make the choice of going and getting sick, or just not going and looking bad. How can I go to a party that revolves around cupcakes? I refused an invitation to go to her home recently, knowing it would be a gluten-fest. Sure enough, my husband went and said they gave him brownies.
  4. I just loved my MIL's response when we went out for lunch once. "Can't you just get a sandwich and eat the insides?" Meanwhile, they go to great lengths to accommodate their son's lactose intolerance (and he's able to take pills for that!). I'm also expected to interrogate restaurants about whether they've ever used their cookware with shellfish.
  5. I'm sure this has been hashed over many times on this board, but I needed to vent a little about people who really don't care about what you can and can't eat. More specifically, my in-laws. At other family gatherings with my own family and my cousin's in-laws, people really made an effort to make sure there was something I could eat or that they cooked something suitable for me. They understood and didn't want me getting sick. On the other hand, my sister-in-law dropped off two boxes of Entenmann's carrot cake, fully knowing I couldn't eat it or even open the box! I went to brunch with my husband's grandfather over the weekend and his first choice was IHOP. When that didn't work out, he took us to a deli. I ordered vegetable soup, which was the only thing on the menu that looked promising...until I got it and realized that it contained mashed up barley and pasta! Then the grandfather and the waitress gave me a guilt trip for not eating it. I started having cramps after trying to fish out a few pieces of vegetable. Whenever we go to dinner at his parents' house, his mom insists on ordering take-out without regard to whether it has gluten or not. They expect me to eat with bagels and sandwiches all over the table. We are at a point where we're just saying that if we they invite us over we'll eat before we go.
  6. Well, I didn't want the fried rice in the first place--I had actually ordered white rice for myself and the fried rice was for my dad and husband. She just did that after talking to me about my level of tolerance. So it was up to me whether I wanted to try it or not. You're right that even a tiny amount of soy sauce can make some people very sick. For some reason, that's not one of the things I react to as long as it's used in small amounts before cooking--although in my own home I prefer to just play it safe. I got the impression that if I had told her I could not have any soy sauce at all she would have gotten the message.
  7. While visiting family recently, I had dinner at Fat's Asia Bistro. If you're from the Sacramento area at all, it's part of the Frank Fat line of restaurants. I'm always afraid to ask about gluten-free options, but the response I got from the server stunned me. At first she mentioned steamed vegetables being a safe option, but then she explained why many entrees may not be safe. I guess I've been looked at like I was growing a third eye so many times that it was a revelation for someone to talk to me about gluten without me having to explain it. She then asked me how sensitive I was, because apparently there are a few dishes that many people are able to tolerate without getting sick. Since I do seem to be able to eat some food with traces of gluten, I tried the mango ginger chicken, which was good and more complex than other versions of mango chicken that I've had. The server also requested that our fried rice be made with less soy sauce in case I wanted to eat it. I appreciated that she thought of that, and was able to eat it just fine. We actually thought it tasted great that way. My husband and I ended up going back a few nights later for New Years Eve and would highly recommend it!
  8. I started having a headache on Thursday (4 days ago) that I thought was a migraine coming on. I had aura symptoms such as flashing lights and weakness in one hand that I very rarely get with migraines. I waited for the headache to go away and focused on taking care of my husband, who had a stomach virus. By the end of the weekend I noticed that I had not had an appetite that whole time, and I was starting to have D. This was in addition to the bouts of nausea that I had when the pain from the headache got worse. This morning I found that it is manageable if I lie very still, but when I get up and walk around the pain gets unbearable, I feel hot and cold, and the nausea comes back. When I try to eat, I end up having to go to the bathroom again. I've tried calling my neurologist's office as well as my primary care dr, and neither one has returned my call, so I feel like I'm on my own here! Usually when I'm glutened I just have a lot of cramps and having to go to the bathroom. Does this sound like a glutening or do you think I'm just sick with a bug? (Or something else like a migraine that won't die?)
  9. I guess I'd have to say I'm self-diagnosed; after having a lot of improvement when I ate gluten-free I went to my gastroenterologist. He was very skeptical and said I wasn't "classic for Celiac". All I could think was, "huh?" I had GI symptoms as well as headaches and a rash that doctors said wasn't eczema or dermatits. My only guess is that he said that because I'm Asian. So I did the blood test but he wanted me to do a host of other tests as well. The lab screwed up the bloodwork and canceled the test, so after he told me to go back I said no way. Eating gluten again was making me so sick! It took 3 weeks after I stopped eating gluten again to feel alright. If I ever really need to have proof, I guess I'll go with Enterolab.
  10. They were telling me to block off at least 4 hours for the test, and I know there are always delays at that hospital. So I'd have to take an entire day off.
  11. I saw the doctor earlier this week and was very disappointed with my experience. I laid out the facts for him--that I tried eating gluten-free and it improved my symptoms dramatically, but they came back when I tried regular food again. He was not convinced. He tried to tell me that I'm "not classic" for celiac, and doesn't think I have it. Hello? I have cramping and diarrhea when I eat anything with even traces of wheat. My severe migraine problem disappeared when I went gluten-free. He didn't even talk about gluten or celiac with me, just said he didn't think I have it. He also told me that after I gave 7 vials of blood, the lab canceled my bloodwork for celiac and did something else for my Topiramate levels. He told me he wanted me to do a breath test for SIBO, but explained nothing about the condition, why he thought I might have it, or anything. He also wants me to come in and do a barium x-ray. Again, absolutely no explanation of why he'd want to do that. I don't have the luxury of taking two days off from work for tests that I don't think I need, especially when he won't justify doing the tests. How is this guy the chief of gastroenterology at Penn? I have the breath test scheduled, but I think I'm going to cancel it, because I don't want to go back to him. I spent some time going through a lot of tests with him last year and in the end he didn't even follow up with me--he left me stranded after my endoscopy wondering what to do. At this appointment I noticed that he tried to avoid discussing the fact that he couldn't come up with a diagnosis or treatment back then. Amazingly, he lists celiac as one of his specialties on the Penn Health website. Do you think it is reasonable not to go through with the tests he wants? I just don't want to waste any more of my time with him, and there are consequences at the school where I teach for taking days off. He's not worth it.
  12. Looking at the lab orders, I'm having all of those. Thanks for letting me know!
  13. I talked to my husband because he goes to the same specialist. He told me to call the doctor's clinical nurse, so I got ahold of her and told her what was going on. She explained to me that he is out of the office until the day of my appointment, but got his approval to order the tests so that the results would be ready for us to discuss at the appointment. Since I've gotten some of the worst pain and discomfort under control, I think I'll go back to work tomorrow and have the bloodwork done after work. I've noticed that because my doctors are part of a university hospital, the primary care doctors are often residents, and they know that their patients have access to better specialists. So rather than deal with liability for things they don't know yet, they just shuffle us off to someone else. The specialists in turn have such a long waiting list of patients that their clinical nurses handle most of their work. It's no wonder I've had to come up with my own diagnosis.
  14. I am so frustrated with the medical system right now that I want to cry. I have been waiting months for an appointment with my gastroenterologist so I could get tested for Celiac. I can't remember how I first made the connection between my symptoms and gluten, but once I eliminated it from my diet, my life changed completely. I have had a severe migraine problem that has put me in the hospital a few times and my neurologist hasn't been able to do anything for it, but it has pretty much disappeared. For years I have had stomach pain that doctors couldn't explain. My skin also cleared up. Everything felt better. As I got closer to the appointment, I tried to add gluten back so that I wouldn't get a false negative on the blood panel. It has made me feel so ill, though. I can't believe I used to feel this way. It's no wonder I used up all of my sick days each year; I had to take today off too. So I called the office and asked if they had any cancellations today or this week, and they refused to let me come in a week early to talk to him or take the test. My primary care doctor has long since refused to discuss anything related to my digestive system. I just can't keep eating gluten anymore--test or no test--and if he says to try again later so he can do a test I will be upset. He is supposed to be one of the best gastroenterologists in the area, so why do I have to go through this?
  15. I'll try that. The salad may be more worthwhile than eating the insides of a sandwich anyway. On a somewhat related note, I had brunch with the in-laws today and asked for my food WITHOUT the toast, and of course the food showed up covered with toast! I said something about it, and they all looked at me like "what's wrong with you?" I felt like if I asked them to do it over, they would just pull it off and give it right back to me. I'm pretty sure about the peanut oil, because my lips and mouth tingled the second I put them in my mouth. Also happens with Five Guys, which also uses peanut oil.
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