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About CarolynV

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  1. Hi Everyone, I'm newly diagnosed and have some questions. The main symptoms I have are neurological. Mostly what I experience is immense fatigue to the point where I need to be in bed most of the day. I have burning sensations and just muscle pain when I exert myself. My tongue even hurts at times. My doctor says that I am experiencing this because of the malabsorption. Do any of you here experience this sort of pain? Do you think that there is something else going on? I'm on a really strict diet that is obviously gluten free but also surgar, dairy and casin free. It's basically a diet for leaky gut. If this is just celiac disease, how long before I start getting better? My dr. also put me on the medication Lyrica to help me deal with the pain. I think it' helping some, but not much. I'm just so sad that I've lost my live. I have three young children and I really miss them. I can't even care for them anymore. Any advice would be appreciated. Thanks. CarolynV
  2. Hi, I'm newly diagnosed too but still not sure since I had already been on a gluten free diet. So, I started looking into celia specialists and found one in La Jolla. I haven't gone, but I'm going to try to call tomorrow. This is actually a research center for celiac. It's called the Wm. K. Warren Medical Research Center for Celiac Disease. Not sure how good they are, but the web site is pretty good from what I've seen so far. Good luck.
  3. Wow, Rpm999, I hear you when you say that you feel bad staying home and going out. I just had to watch my husband take our kids to church without me. I just hate this. The last 4 months have been aweful and it seems like no one seems to really understand the pain I'm in. Bobbi, I would love to read your blog. You sound like you've had as much done and maybe more than me. And, I'm so new to this whole thing (just diagnosed last Thursday, but it was only 60% specific since I had already been on a gluten free diet for about a month-had no idea I was celiac, a friend just recommended that I go on the diet since it can help with all kinds of disorders). Anyways, how can I find out where your blog is located? Thanks so much. Good luck to everyone here and I hope that everyone starts to feel better very soon. CarolynV
  4. Hi, I just found this forum and am so glad. I tested positive for celiac disease last Thursday after almost 4 months of strange neuological symtoms. My neurologist did every sort of neuological test he could think of and found nothing so he referred me to a very well respected rheumatologist in my area. The rheumatologist is the one who found me positive. I was shocked because I never had considered having celiac and asked her if that was the reason for all my weird symptoms (immense fatigue, muscle pain and twitching). She said that celiac could absolutely cause all my symptoms. The problem is, when I started researching celiac, it said that needed to be on a regular diet in order for the results to be accurate. About a month ago, I had started a gluten free diet which was recommended by a friend. I actually called my GP and my neurologist and asked if it was OK to do this and they both said it wouldn't hurt me. My rheumatologist knew that I was on this diet when she tested me, so she did a complete celiac panel on me. So, the positive result came back in the IgG Antiliadin which I've now found on the internet is not very specific. My IgA results were negative (which is more definitive). So, I'm not quite sure what to do. The rheumatologist was so convinced on Thursday that I had celiac disease that she said she didn't even need to see me again. She said that I just needed to stay on the diet that I'm already on. I do know that I will place a call in to her tomorrow, but I just wanted to know what you all thought. I've also read on line that a positive result for celiac disease is not only a blood test, but a biopsy. Have any of you done both? Also, have any of you seen a nutritionist? Thanks for any thought that you have on the matter. If this is what I have, I actually consider myself lucky, since I was tested for so many other worse things. CarolynV