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About Galixie

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  1. 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. It's not the best article as they mention 'treating' it with antacids which is pretty much the opposite of helpful. ( 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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%?
  6. 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.
  7. 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.
  8. 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.
  9. I always find myself reading the articles about how to tell if you have a gluten intolerance. I don't know why I read them. This one caught my eye though: It sounds fascinating and I wonder if it works. Unfortunately, it seems to be specifically useful for people who have gut issues (and I'm guessing only gut issues), so I already know it wouldn't be worth my time to try it. I am kind of wondering about something else though. It turns out that I have gallstones (or, more specifically, one really large gallstone). Would having my gallbladder removed have any effect at all on my gluten sensitivity? I'm guessing it probably wouldn't, but wondered if anyone had any experience either way.
  10. Anyone had a reaction to Quorn?

    I tried Quorn a number of (more than 10) years ago. I had a pretty significant reaction to it (bloody D) and have never eaten it again. I'm sure it is fine for many people, but some, like myself, clearly do have a bad reaction to it. I wasn't watching for gluten back then, so I would never have noticed if it had any gluten or not. Gluten alone doesn't give me that kind of reaction so there was something particular to Quorn that my body truly didn't care for.
  11. Need to lose

    I find myself trying to explain this to pretty much everyone, so I'll just explain it here too: I have a couple of forms of anemia. One of them is treatable with B12 injections and the other is largely untreatable. This means that nothing I eat will increase my energy levels. (Neither form of my anemia are treatable through food or oral supplements.) It also means that I never get that 'second wind' that is supposed to happen when exercising. When I overdo my level of activity the fatigue is long-lasting and debilitating. It's a bit like having a bad flu where you are too weak to stand up, except having that weak feeling last for days or weeks at a time. So I have to approach exercise with caution. Currently I have built up to 75 minutes of walking each week. Unfortunately my level of fatigue has also noticeably increased and, despite attempts to cut back on total calories consumed, I have yet to see any progress. Based on the math, this approach should be making a difference. I am not sure why it isn't. I plan to see if my naturopath has any further suggestions for me.
  12. I find this interesting. I had an allergic reaction to something (never did pinpoint the exact trigger but it was between a couple of things I'd never had before and am not likely to ever encounter again). Since that was my first time getting actual hives, it was the first time I ever went to an allergist. They did pinprick tests on the most common allergens and the only one that came back as a definite positive was grass. I had always suspected that I was allergic to grass, but that was my first actual confirmation of it. I don't have a celiac diagnosis, but I do have gluten ataxia and I have also found myself kind of wondering if my grass allergy could somehow be connected to my gluten sensitivity. I have the most trouble when I'm around freshly cut grass.
  13. I'm going crazy

    Vitamin B12 deficiency can also cause anxiety. If you go for more testing, you might want to ask them to check your B12 level.
  14. A link to this page was posted on another forum I read and I found it pretty interesting so I wanted to pass it along here. It's clearly meant for practitioners (in Europe), but the detail is fascinating.
  15. I also agree that repeating the blood tests might be helpful. Something might have changed since the last time you had them run. In addition to the newest tests, you might also ask them to re-run the AGA IgA test that was negative previously, because then you could compare your current result to the previous result. Unfortunately, many labs have discontinued that test so you may not be able to get it re-run. I also wanted to point out that even the newest tests aren't without flaws. The only positive I've ever gotten was on an AGA IgA result. At the time I didn't really question it when I was told that result didn't indicate anything. By the time I thought to question it, the lab had stopped performing that test and I have since never had a positive result on any of the newer tests. It was only by going gluten free for a few months and then reintroducing it that I found out that I did have a reaction to gluten. If you don't want to go for further blood testing, you could do what I did, which is to go completely gluten free for 3 or 4 months and then reintroduce gluten to see how your body reacts. If you decide to do that, I would recommend keeping a food and symptom diary starting from before you even go off of gluten so you have something concrete to look back through and determine what, if any, effect there is.