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About Lucydesi

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  1. Fully agree with what people have said. Hope you feel better. I diagnosed myself with Celiac disease (which doctors just love )because none of the local doctors where I live even considered it. I had to keep pushing to get referred to great GI specialist who believed me and diagnosed me. I think ER docs for the most part are great, but really want to patch you up and get you out - sad state of affairs because of no health insurance. Hope you are getting more answers.
  2. Sometimes it seems like all I have the energy for is work. I would like to do more but my job is pretty emotionally demanding so it seems like I don't have much energy for anything else. I do fun things on the weekends sometimes, but wish I could swing more of a social life. I wonder if anyone else struggles with the demands of work and energy levels. I have been gluten-free for 3 years and am much better, but I am really cracking down on small amount such as those trace amounts found in lipstick. My house is completely gluten-free. Any tips on increasing energy? Thanks so much.
  3. We all do it but it will become more of a habit to read labels. I really like Align - the probiotic from Proctor and Gamble. You can get it any where but it is expensive. I don't give blood any more although I would like to. It just makes me too tired. Don't induce vomiting . . . you will just have to gut it out if you will excuse the pun. Really try Align and I am not a paid spokesperson.
  4. If you need a great gastroenterologist (sp), Dr. Gregory Sayuk in St. Louis is the best. He believed that there was something wrong and diagnosed me.
  5. I can certainly relate. At lunch when I am eating something "weird" or not having cake for a birthday party, I just try to keep it simple and say "oh, I cannot eat wheat." Sometimes people want more info, but usually I get the look like that says I must be exaggerating. I remember I was that way when a friend of mine got diagnosed many years ago. I didn't understand how a minute amount can wreck havoc. I think I even go into denial although I have read a lot on the disease. At first I think my own dad thought "it was in my head" until he saw the results of the endoscopy. Now he is cutting back on his wheat, and has noticed a improvement in his health. My mom makes me gluten-free things which is very sweet. I have pretty much accepted that people are going to believe what they want. Once they are around you for a while, they notice that you really don't eat the donuts or coffee cake someone brought in. They don't understand how ill this disease has made me and I don't want to go back. I have lead to some people being diagnosed and their lives improving tremendously as a result. That makes me feel good.
  6. Wow, I think that is a great way too put it. My perceptions are changed for a while and it really sucks. People can really annoy me and I would normally just blow it off. I agree about the antidepressants, they can only do so much. Seems like gluten can override their effectiveness. I am really getting careful with everything now including lipstick. Tiny traces of gluten don't seem like a luxury I can afford.
  7. Just wondering how gluten affects your mood. I have been diagnosed with depression for years and take an antidepressant which generally helps. How can I describe this . . . I can tell when I have accidentally gotten gluten because my mood can just go down the tubes. It can take me a couple of days to feel better and happier. Usually I am very fatigued as well because that is how gluten affects me. Just curious how others feel about this.
  8. I have been diagnosed with RLS. Unfortunately it has not gone away. Maybe improved a little. Is there a connection between Celiac and RLS. Never thought of it before.
  9. I am so excited to see this. I went to a ENT and she told me that she thought the sores were coming from my gut. This eventually led to my diagnosis of Celiac disease. I too have been tested for strep throat, given antibiotics, and pain meds because they thought I had the flu. I could barely swallow. They always seemed a little surprised when I didn't test positive for strep. This disease can really make you sick.
  10. I can certainly relate. Like you I still have uncomfortable sensations in my stomach and almost a pressure feeling sometimes in my bowels. I really like the probiotic Align for pain in my intestines if I inadvertently get gluten. Some days I feel pretty good and others I feel tired and depressed. In many ways I feel "lucky" to have this autoimmune disorder but some days I get tired of trying to figure out why I feel like crap. Hang in. We will figure this out together.
  11. Thanks so much for the tips. I am pretty sure MSG is an issue for me, and my mom becomes very ill if she eats it. I don't think I am lactose intolerant because once I quit the wheat/gluten, the burping and bloating went away when eating cereal and milk, and I don't have that if I drink milk now. How did you know that milk is an issue for you? The only way I would say I cheat is that I try to be gluten-free at restaurants, but sometimes you just don't know for sure until later. To the point where I just don't like to eat out any more. Thanks for the encouragement. You know what is weird - the bread isle in the grocery store smells disgusting to me now. Must be a psychological thing. This website is giving me renewed hope.
  12. Yes, I ran a low-grade fever for at least a year before I was diagnosed with Celiac disease. I am not sure why, but once I went gluten-free my temperature returned to normal. If I eat inadvertently eat gluten, I can get the fever back. For me, it spikes in the afternoons and makes me feel lousy.
  13. I was officially diagnosed with Celiac disease about three years ago and cannot begin to tell you how much better I feel not eating gluten. Like many people, over the past 30 years I was misdiagnosed with IBS, diverticulitus (sp), etc. I feel so much better now and have lost a lost of the joint pain, depression, and low grade fever but I find that I still do not feel 100 percent. Granted I am older but I find that despite my efforts at a restaurant, I can feel lousy just a few days later, and it can take me a couple of weeks to recover. I notice my mood is depressed, and my temperature will spike to 99.6 (which is high for me) or so during the work day. I know that Celiac disease has been harming my body for years, and my gastrointerologist said that in my case probably hormones and/or stress exacerbated the disease process, actually making diagnosis easier. I am going to double-check my medications and foods to ensure that I am totally gluten-free, but at my age and having eaten wheat/gluten for a long time, is the damage already done to some degree? I am blessed that I can work full-time but at times it is very difficult. Thanks for your input. P.S. I have been allergy tested and I am slightly allergic to eggs.
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