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Galixie

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Galixie last won the day on December 31 2016

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About Galixie

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  1. Thanks you guys. I think part of my sadness is that, lately, I am seeing items that I used to buy regularly at my local store getting discontinued. I can understand that gluten and dairy free stuff is not a big seller, but it really sucks when your go-to items are no longer available. Dairy is kind of a big deal for me. I'm sensitive to both casein and whey proteins (which eliminates a whole lot of foods that have had their protein content bolstered by milk proteins). I have found that I can handle one meal with significant dairy every few months and be fine, but I can't handle frequent small amounts without it making me ill. Go figure.
  2. I miss being able to find food I can eat. After going up and down the frozen food isle at Albertsons (twice) and not finding any frozen dinners that were gluten and dairy free, I went over to the ready-made counter and asked the attendant if the roasted chicken had any gluten in it. He looked puzzled, so I asked if there was any flour in it. He told me he would check the package. He looked at something in another room, then told me he didn't see anything like that in them. So I bought a piece of chicken and took it home. As I was opening the bag I noticed what was printed on the sticker. ~Sigh~ Lately I find I am getting tired of rice and eggs (the only things I can cook that fit into my schedule). I've started to hate food and all of the trappings that go with it. I'm seriously considering Soylent (which is not certified gluten-free, but would probably be a low enough trace amount that it wouldn't bother me). I realize that giving up on eating is not an ideal solution. The most annoying thing is that I am somehow gaining weight lately (too many potato chips, probably). Grr.
  3. I was watching the news a couple of nights ago and there was a story about a treatment for celiac that is under development. It sounds kind of neat because some researchers have been able to invent an enzyme that doesn't exist in nature that can destroy gliadin. Obviously the goal is to treat people with celiac disease. It sounds like it might also be promising for NCGS too. It might be something that's already been mentioned on the forum, but if not I thought I'd bring it up. It's still in development so probably a long ways from becoming an actual treatment. It's hopeful to hear that progress is potentially being made. This is info about it: http://hsnewsbeat.uw.edu/story/uw-spin-out-seeks-develop-celiac-disease-therapy This is the news story I saw: http://komonews.com/news/healthworks/uw-researchers-developing-cure-for-celiac-disease I wasn't sure where to post this, so if it needs to be moved to a different section that's fine.
  4. I did and I left her a thank you note also.
  5. I suspect, considering how long ago you posted the question, that you have already gotten your answer. I'm sure it's different for everyone. I ended up eliminating dairy (kind of by accident, but I decided to just roll with it when it happened) and the first thing that happened for me was a splitting sinus headache. I think that was within the first couple of days. Right after that my sinuses completely cleared up for the first time in years. I think it took at least a week for me to notice that it was also helping with my gut issues (maybe longer. I don't really recall now). I did go through some withdrawal (cheesecheesecheesemusthavecheese!) but, once I got past that, I stopped craving any version of dairy. I stayed well away from dairy for about a year and I now find that I can indulge in a meal that has dairy once every few months and have no noticeable effects. I went dairy free before I gave up gluten and sometimes I wish I could go back to just being dairy free. It's so much easier than having to avoid both.
  6. If only I had a medical diagnosis... ::sigh::
  7. I had two experiences this weekend. One was unusual and one was not. The unusual one happened at a restaurant. I had ordered a burger on a gluten free bun. We were waiting for our food for a long time and had just begun to speculate on what the hold up was, when our server came over to explain that my burger had been put on a regular bun and she had needed to explain to the cooks that they couldn't just swap the bun out. So they were busying remaking it. It was so nice to have a server who is aware! She was used to dealing with allergy stuff for one of her kids, so she was really on top of it. The not unusual experience happened at a party when someone who doesn't know my whole life story (which is what it feels like I'm trying to explain if I start in about the entire topic of gluten and how it relates to me personally) asked me how I know I need to be off of gluten. The hardest part about that question in that type of setting is that it just takes too long to explain. I really want to have people understand the reasoning behind my choices, but I prefer not to bore the uninterested parties with details they don't care about. In the end I deferred until later and wrote him a long email instead. How do you handle the question of how you know you need to avoid gluten? Do you have different answers for different occasions or social settings? I find that I'm usually at a loss for words because I want to be concise but my story just isn't a concise one.
  8. You'll want to keep an eye on all your vitamin levels, as absorption problems are quite common with gastritis. You've probably already looked it up, but this is the WebMD page on gastritis. http://www.webmd.com/digestive-disorders/digestive-diseases-gastritis It's not the best article as they mention 'treating' it with antacids which is pretty much the opposite of helpful. (https://www.sciencedaily.com/releases/2002/01/020115074441.htm) If the medication they were going to prescribe is an antibiotic, you might want to reconsider. If you have H. pylori, an antibiotic is the only sure way to get rid of it. If you don't get rid of the bacteria, the B12 deficiency will worsen.
  9. You mentioned PCOS and also that you're B12 deficient and that rang some bells with me. Are you getting treated for the B12 deficiency? I ask because I was once diagnosed with 'atypical PCOS' (I had small peripheral cysts on each ovary but normal hormone levels). It was later discovered that my B12 was low and, after several months of B12 injections, my PCOS simply righted itself. Also, B12 deficiency can cause a whole host of neurological problems. I wonder if your doctor included the AGA tests because those are still the only tests that can detect some NCGS people. I only tested positive on an AGA IgA test and it had me going around in circles for a long time, so I understand what it's like to not know for sure. It sounds like you've had worse symptoms than I have. I ended up going off of gluten for almost 4 months, didn't think anything had changed at all, went back on it for two weeks and discovered that my dizzy spells (which I had never associated with gluten) came back within days. In the end, if you feel better off of gluten, it's best to stay off of gluten. If you're taking tablets for B12, you might want to try an injection to see if it works better. Absorbing B12 through the digestive system is ridiculously complex and problems can happen at multiple stages in the process. Some people even have genetic mutations that keep the body from absorbing enough B12. The key is balance. B12 works best when there is also enough folic acid and iron for blood production.
  10. Thank you Boron. So far I haven't been given any recommendations on treatment, but I do think I prefer not to have surgery if I can avoid it.
  11. Yeah, my hemoglobin always seems to be around 13, so it's totally fine. Thanks for all the info! I'm still stumped on my oxygen problem. If my heart and lungs are both fine, then it has to be a blood disorder of some kind. The weird part is that there really doesn't appear to be any anemia going on, so it doesn't make any sense whatsoever. Hopefully my doctor will figure out whatever it really is (and fix it!). Keep your fingers crossed for me.
  12. Yeah, I know it sounds kind of crazy. The really crazy part is that they all came to the idea on their own and I really don't fit any of this: "Risk factors for thalassemia include: Asian, Chinese, Mediterranean, or African American ethnicity Family history of the disorder" I haven't had any genetic testing done. The reason the most recent doctor thought of it is because I have a large pigment gallstone. Unlike the more common cholesterol gallstones, pigment stones have a lot of bilirubin in them. You end up with too much bilirubin in the gallbladder when your body is excessively destroying red blood cells. I was told that pigment stones are a common occurrence in thalassemia. The other thing that made him think it might be thalassemia is that my blood oxygen level drops into the 80's when I just walk up a flight of stairs, or down a hallway. I'm fairly certain it's got to be something else. I'm crossing my fingers that it will be something treatable. As for the food fantasy, I was fantasizing about comfort foods in the way I remember them. Since I also can't have dairy, the buttermilk fried chicken and the rich milkshake are both out of bounds also. I know that gluten ataxia can cause permanent damage (I do usually remind myself of that when faced with temptation). I've just been kind of miserable lately and crave the comfort foods I remember. Unfortunately none of the foods I grew up with are safe for me now. I hate that. In my weaker moments (and especially at times when I'm dizzy) this point that is made in the 'what is gluten ataxia' article springs to mind and makes me start doubting everything: "Gluten ataxia symptoms are indistinguishable from symptoms of other forms of ataxia." The doubts that circle my brain sound like this: 'What if the lack of dizzy spells while I was off of gluten was just a coincidence? What if I'm forgoing foods I love based off of a mistake? I did test positive for antibodies once, but that could also have just been a fluke and I'll never know because I can't ever get that test redone.' There is really no conclusive way for me to resolve my doubts. Even if I decided to reintroduce gluten to see if it made me dizzy again, I would first have to resolve whatever is making me ill/dizzy currently. So I remind myself that it is better to be safe by staying away from gluten than to be sorry. It's just a frustrating mental exercise in restraint. Have you ever used a pulse oximeter when you're cycling? Do you know if it shows a drop below 94%?
  13. Do you ever feel like cheating when you're sick because you already feel miserable and it couldn't really make you feel worse? 'Cuz that is how I feel currently. So far I've managed to resist the urge, but the longer I feel unwell the harder it is becoming. Last night I was fantasizing about fried chicken, sourdough bread, and a milkshake. In the past month I've had a ridiculous number of tests done on me starting with a CT scan to see if I had a blood clot in my lung (thankfully I don't). While I so far have no answer for what is ailing me at the moment, one truly odd thing has occurred: In the past 5 years I've now had 3 different doctors - all independent of each other - come up with the theory that I might have thalassemia. That's a fairly rare disorder and certainly not the first thing that is going to pop into most doctor's heads. At this point I'm so confused I don't know whether I should worry about it or not. (I'm confused because my Hb A and Hb A2 were tested 5 years ago and - like all of my tests, always - came back perfectly normal.) Not knowing what's wrong is stressing me out. (Not being able to breathe is also stressing me out...) I guess I just feel like whining a bit. Sorry.
  14. Thanks Cyclinglady. I think you are right that the woman in the article probably didn't have celiac to begin with. Hope spring eternal that I'll someday stumble upon something that lets me go back to a semi-normal way of eating. (Life would be easier if I could have soy sauce.) Gallstones seem to run in my family also. Oddly, though multiple people in my family have had them, only one great aunt has had to have hers removed. I'm scheduled for an ultrasound tomorrow, although I'm not too clear on what that would show as far as the health/functionality of my gallbladder. I guess I'll find out tomorrow. Was your surgery laparoscopic? I fear that, if I have to have surgery, my stone is so large that laparoscopic won't be an option.
  15. It turns out that I have a very large gallstone (think golf ball sized). I know it's been there for over a year because it was spotted on a CT scan that was done in January 2015 as well as one that was done two weeks ago. As far as I know, I've never had a gallbladder attack. (I'm guessing I would know if I had.) One of my friends suggested that maybe I'd be able to reintroduce the gluten and dairy that I currently have to avoid if I had my gallbladder removed. I thought that seemed doubtful, but I decided to see what I could find online about that topic. I found one article about a woman who was able to go back to eating gluten after gallbladder removal, but by far the majority of the articles all seemed to mention that there is a link between celiac and gallbladder disease. I have, so far, not seen any of the research that backs that. I'm kind of terrible at online searches, so I am willing to assume there really have been studies. It brings up a few questions for me: 1) Some of the articles seemed to indicate that gallbladder disease without stones was more likely in a celiac patient. Does the association only apply to gallbladder disease without stones? 2) My sensitivity to gluten is odd because the only real symptom I've ever pinpointed was gluten ataxia, and gluten ataxia is generally more associated with celiac, which I have never tested positive for. Is the combination of gallstones and gluten ataxia enough to point to it being actual celiac rather than gluten sensitivity? (I realize that, for practical purposes, the answer to this question shouldn't matter. I can't help wondering though.) 3) Does anyone know if it's possible to get rid of a large stone without having to have the gallbladder removed? I'd kind of like to avoid surgery if possible. 4) If I do have to have the gallbladder removed, do I need to be concerned about not absorbing fat soluble vitamins? I've read things that say a person doesn't *need* a gallbladder, but the people I've talked to who've had it removed all seem to have issues from not having one.