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About Thea_Bug

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  1. Yes--just curious if TTG returning to normal was ONLY a sign of celiac, because even though I realize that gluten sensitivity and celiac really aren't different in terms of the treatment, I wonder with how to approach getting my kids tested. Does anyone know if levels returning to normal always means celiac (as opposed to gluten sensitivity)? I've heard conflicting things. THanks!
  2. I lost a ton of weight unintentionally before my diagnosis. I am continuing to lose weight unintentionally now that I'm eating gluten free. With the gluten free weight loss, I notice that I'm not particularly hungry. My theory is that my body is getting more than it's used to getting, nutrient-absorption-wise, so it doesn't need me to eat as much.
  3. Try Floradix for the iron. It's expensive but it works. It's liquid iron and you can buy it at Whole Foods. I noticed that the pills made me sick, the iron in vitamins wasn't enough for me (probably b/c it wasn't absorbing), and the food wasn't getting enough in me, either. As for the stools, I wouldn't worry. Or, I say that because mine are not at all pencil thin and they seem perfectly fine! But maybe I'm wrong about that one. I always thought they were supposed to be banana size in circumference....?!
  4. That's the weird thing, AzizaRivers - I don't think I'm all that sensitive to cross contamination or trace amounts. But now that you mention it, I'll definitely start paying more attention in the future. I do wonder if it's gluten related for sure because at the height of my gluten related problems, it was really, really bad - picture a mustard colored tongue, all day long, every day.
  5. Amanda, I forgot to suggest liquid iron called Floradix. You can buy it at Whole Foods and probably at other places. It will help get your iron up when your body is not absorbing the capsules. This will help with your energy levels. As for the testing, I'd say to go for it for the peace of mind. I have already had to field a bunch of questions from people (which is why I like knowing *for sure* what's going on), but that's just me. Everyone is different and of course do what you're most comfortable with. Good luck! Thea
  6. Totally random question, I know.... but has anyone here had a yellow tongue? I wonder if mine is related to celiac. Mine had gotten really bad before I went off gluten. It now comes very occasionally. I know that the tongue can be reflective of what's going on in your body (and often specifically with digestion), so I wondered whether anyone else had experienced that. Also, as an avid skier, I've noticed that I can no longer tolerate the altitude! Haven't been skiing this season since going gluten free, but have gone every year for the past several years, and it has been unbearable. It wasn't an issue for me before at all. I know this is random and a long shot, but I'm just curious if the two could be related b/c the onset of my first really bad altitude sickness was right around the onset of my celiac symptoms. Thanks! Thea
  7. Thanks guys! I also forgot to ask earlier: could my situation just be gluten sensitivity (I realize the distinction doesn't really matter but I just want to know)? I've read conflicting things on this board - some say TTG IGA only shows up with celiac (if it's showing up related to gluten issues - that is, excluding the other reasons a TTG IGA test could be positive), and others say TTG IGA shows up with celiac AND gluten sensitivity.... ???
  8. Hmm, lots to think about, not sure how helpful my response will be. I'm unfamiliar with the celiac disease tests you had that were positive....maybe others on here will know more about that? Any chance he can run some other celiac disease related blood tests? Some of your symptoms definitely sound celiac disease related.....the nerve stuff, bowels, fatigue. And then you mentioned your borderline iron. That's a definite sign. I guess the slightly elevated CRP could indicate some other autoimmune response though maybe? Is that the one for lupus or is the sed rate/ANA only for lupus? I would definitely try no gluten for longer to see what you think...of course, as you know, don't do that now or else it will invalidate future blood tests and/or endoscopy. My advice would be to seek out this doc again for more celiac disease blood tests OR find another doc who will give you the full battery of celiac disease tests. Good luck to you! I hope you find your answer soon! Thea
  9. Thea_Bug

    Weight Loss

    Interestingly, I lost weight both before going gluten-free and now that I'm gluten-free. Huge amounts of weight while eating gluten before getting diagnosed and then now that I'm not eating gluten. Weird. I keep half expecting to gain it all back someday, so I keep all kinds of sizes in my closet
  10. Emilee, I second the suggestion above to get copies of your results from all of your doctors. It's so useful to be able to look back years later to piece together a puzzle (if necessary), AND you never know what a doctor may not be telling you, or may have missed. Unfortunately, it has happened to me too many times, so now I always get copies and I keep everything. As for the hair/nails, yes! It's so much better now. However, I'm also taking B12, so I don't know if that's part of the difference. My hair and nails are growing at lightning speed now. You mentioned some of your symptoms. I will say that my gas, headaches, diarrhea and nausea have completely gone away now. It's amazing what going gluten-free has done for me. You may find that that's the same issue for you. Whatever it is for you, I hope that you find your answer. Good luck to you in all of this! Thea
  11. Hi all, Long time lurker, first post here I'm confused about my results & haven't heard back from my GI, who's usually slow about getting back - I just have a copy of the lab results in the mail. My TTG IGA was very high several months ago. I then went gluten-free. I didn't do the biopsy because I was undergoing another surgery at the time and decided not to (I realize the time has passed now that I'm gluten-free). I have been gluten-free now for a while. I had a repeat blood test last week and the TTG IGA is now completely normal (under 1 in fact!). At my follow up, before the GI drew the blood, she said that my positive response to the gluten free diet, plus the TTG IGA, may indicate celiac. She said that the follow up blood test would confirm celiac for sure. My question is this: does this make sense that the follow up blood test would confirm? I get that the false negative rate for the TTG IGA is very low, and is only for a few other conditions like autoimmune stuff and liver failure. So does the fact that it went down to practically zero over the course of several months mean for sure that it's celiac? That would make sense to me, because if it was something else in the first place (e.g. liver failure), a gluten-free diet shouldn't affect that number. But of course, then there's the fact that the biopsy is supposed to be the gold standard. So I guess that's where I'm confused. Isn't TTG IGA a measurement of ACTUAL REPAIR GOING ON TO THE INTESTINES in the first place? Right? Isn't that the body's immune response to damage in the intestines? Or do I have that wrong? So confused right now! Thanks in advance! Thea