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About flutterby

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  1. I have heard several people mention that their Celiac manifested itself 'after getting the flu'. This was my case ... I had been having problems for months, but it wasn't until after I had a 3-Day fever/flu that I got so sick I was eventually diagnosed with gluten intolerance. Could this be the Flu acting as a trigger? Or could a high fever/flu-like symptoms be part of the body's autoimmune response at its peak?
  2. Agreed. See this video for more info: A lot of the times I have different reactions, depending on what else I've eaten. Even 1.5 years after going 'gluten' free, I felt great but had an episode of getting suddenly sick and having to go to the doctor, who told me ... be more careful with your diet! I was getting a lot of CC, apparently.
  3. I have had these problems too. They got substantially better after going gluten free, but only after a long time, due to the learning curve. Memory/concentration problems are one of my first symptoms of a gluten reaction. However, my doctor also told me that it's important to be careful as Celiac is suspected to be linked to M.S. HOWEVER: Some amount of forgetfulness also normal! Low-blood sugar can also cause these kinds of issues. Lack of sleep. As can caesin (milk protein) reactions. If you are really worried about it, I would suggest trying to see a neurologist. Especially if the problems have gotten worse, it's worth getting it checked out, if even to ease your mind!
  4. Quakers has been known to have cross contamination issues. Also, Quinoa that is not listed as gluten-free may also have cross-contamination. Also, if you have had serious damage from celiac, I think (someone correct me if I'm wrong) that you can feel sick even if you are not 'glutened', because your body is still recuperating. Also, other things can still set you off if your digestive system isn't healed.
  5. That's exactly what I went through! My doctor was at a loss, and either didn't know to test or thought that it wasn't necesary since I improved on the diet. Two years later I am seeing a specialist, who wants to test and make sure and rule out anything else. But I absolutely failed trying to introduce gluten into my diet again, so that's as much proof as I need.
  6. I've had the same experience. My favorite was a vegan acquaintance who said "Oh yeah, dude. Cheer up!!! I TOTALLY know how you feel. I'm vegan, after all." I explained to him as politely as possible that the difference was that he has a CHOICE. The best advice I heard was during my initial diagnosis. A close friend told me about her Celiac friend, and how they would just laugh and laugh and laugh when people said things like "OH! BUT YOU CAN'T HAVE EGG THEN!" It's also important to give kudos to people for trying, even if they don't get it right.
  7. Thanks for sharing Shauna, and everyone else! This is one of the things that I was hoping to find out. It's an obvious problem that doctors don't know to look, or won't listen. With 1/133 people having Celiac, you would think it would be the FIRST THING they'd check.
  8. You know, I was thinking about putting a genetic test AND blood or biopsy option, but they only let us have so many. This is one thing I have noticed ... we are all so different! I feel very fortunate that I have had doctors that listened to me, possibly because they were at a loss for what to do.
  9. With so much talk about the big Diagnosis, I am curious what category people fall under here on the forums! Or, what category do your family members fall under?
  10. Hey Folks, This remind me of something I have had doctors tell me before. Keep in mind that, although it's important to know what's causing your symptoms, a diagnosis of Celiac is not necessarily a good thing, as it may cause insurance premiums to go up or for you to get denied insurance altogether. What's most important in not self-diagnosing, I believe, is to know that it's not something else that's causing your symptoms. A few years ago I was tested for hypoglycemia. The tests came back negative but with some obvious irregularities. The doctor's response? "I can't give you a diagnosis as hypoglycemic. However, I strongly suggest you follow a hypoglycemic diet. Also, you do NOT want a diagnosis of hypoglycemia on your record. But follow the diet."
  11. Thanks, Sophie. Basically, at this point, eating a lot of gluten for weeks or months isn't really an option. I'm not willing to be miserable just to get a positive diagnosis. I've already noticed some symptoms like problem with short term memory ... something I REALLY don't want to mess with. I brought this up with my doctor and he said we'll do the tests, but that they're not the only indicator he uses for a diagnosis, in part because he thinks that reintroducing gluten completely would probably be a bad idea for my health. He's basically THE celiac expert in the country where I live so we'll see what happens. I think he's more concerned with ruling out that it's not something else besides celiac than getting a positive celiac test. That's more my concern, too. I had never heard of the B12 thing ... interesting! I did have my bloodsugar levels tested a few years ago. The doctor said my levels weren't "enough to be considered hypoglycemic" but I should follow a hypoglycemic diet. Go figure. I always knew that it wasn't just SUGAR like they use in the test but sugar combined with wheat that made me get that way.
  12. Hey folks, I started introducing gluten again after the doctor said I could 'cheat' a little before my blood tests. Like everyone else, what this made me realize is that even with negative tests I will remain gluten-free! Anyway, I was wondering if anyone else has experienced the following sensation after getting glutened. I refer to it as 'internal shaking' because it feels like my body is shaking all over, but there aren't any visible signs. After an hour or so, my hands start to tremble and my fingers twitch. It is usually accompanied by disorientation, concentration problems. Sometimes my fingers start to tingle. When I was younger we thought this was hypoglycemia. It got better when I stopped eating "high carb" breakfasts (i.e. wheat, cereal, etc). So now I realize it must be a gluten or wheat reaction!
  13. flutterby

    Brain Fog

    I used to have problems with this all the time, and still do even after going gluten-free. I had thought it was reactive hypoglycemia because it would always happen an hour or two after eating, for example, a breakfast with carbohydrates (read: bread). I would get irritable, confused, unable to think properly, unable to make simple decisions. This weekend I started a challenge diet, and I only lasted two days as all of those symptoms came back. I started forgetting basic words in Spanish (I'm bilingual), the names of organizations, etc! Still, if it is a continuing problem it may be worth talking to a neurologist. MS is apparently related to Celiac Disease and it also causes memory problems.
  14. flutterby

    Dry Bleeding Hands

    I used to have this problem when I was younger ... my hands would get so dry and red and itchy that they would crack open and bleed. It turned out I was allergic to the lanolin in the lotion I was using, so yes, double check ingredients!
  15. I had a similar reaction to a Swiss Miss hot chocolate brand. Caused severe joint pain and some other things. Must be the dairy, but I do have the experience that dairy in other forms doesn't cause the same reaction! You might check to see if there are other ingredients like corn or soy that might be causing a reaction.