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teebs in WV

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About teebs in WV

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    West Virginia
  1. Happy birthday and may God bless you today!

  2. If I were you I would ask for another biopsy. Even though you are gluten-free, it can take a long time for it to get completely out of your skin (as you mentioned). I was diagnosed via skin biopsy in Oct. 2005, immediately began gluten-free diet and started dapsone at the same time. I have tried many times to go off of dapsone but I still break out after a few days.
  3. Thanks Dee. I found the PBCers website and actually found a doctor that is in the same GI group that I go to. I am going to ask to be referred to him. I have never been tested for any vitamin deficiences or osteoporisis. I asked once and was told I was too young to worry about it (AAAAAAAAAAAHHH). I have done so much research on my own on PBC and based on what I have read I definitely need to find a specialist that has seen this disease before. I am curious - have you had the itching that is common with PBC? I have been going crazy itching again and have blamed it on Celiac Disease - until I found out a few months ago that it is very common with PBC. My hands and feet have been itching like crazy, and for the past few days I have itched everywhere - to the point I am ready to lose my mind. I know there is medication they can give to relieve the PBC associated itching, but of course my GI didn't give me that. He did give me Ursodiol and I started taking it on the 2nd. I am so glad that I have someone else that I can talk to about this!
  4. I made a huge batch for Christmas. My great-aunt always made Chex Mix for Christmas (her own special concoction) so it has been a family tradition for years. I took over the duty when she passed away in 1993. Last Christmas - my first being gluten-free - I didn't make it. This year, I decided I would try and bought the corn and rice crunch 'ems that everyone else has mentioned. I added peanuts, glutino pretzels, barbecue seasoning (dried powder), and a little sugar (my aunt always used Life cereal and that was my favorite part - I always used to pick out the Life and just eat that!). EVERYONE that ate the mix that I made this year loved it and had no idea that it was gluten-free. It was my greatest accomplishment this Christmas season and it felt so good to be able to revive an old tradition.
  5. Based on my personal experience, a knowledgeable dermatologist is a must. I was very lucky that my derm took one look at me and was very certain that I had DH before he even did the biopsy. I had no GI symptoms at all - just the itchy blisters. I suggest searching the internet for dermatitis herpetiformis + dermatologist + your state and see if you can find one that way. Or if you provide the city or state someone may be able to offer more suggestions. Hope this helps.
  6. Would you mind sharing the name of the resort/hotel where you stayed? Thanks, Tracy
  7. I honestly do not know why - that is what I have read in my personal research. Someone else on here may know. Anyone???
  8. Everyone is different - I am sure someone out there has DH that is not symmetrical - but it typically is (mine is). The biopsy needs to be beside a lesion - not an actual lesion. My biopsy was taken right beside one on my elbow and came back positive. Good luck - I hope you figure out what your issue is. Although if the gluten-free diet has helped you I would definitely stick with it! It really isn't that bad after you get used to it - I try to look at it like "it could be worse".
  9. Happy Birthday Judy - best wishes for a great day (what's left of it anyway!) Tracy
  10. Thanks for posting. I always like to watch anything on TV that mentions Celiac Disease - let alone a whole 20 minutes! Thanks, Tracy
  11. Dee, Thanks for your input. I had the biopsy and the diagnosis came back as Primary Biliary Cirrhosis. I have been gluten-free for over a year and my enzymes kept rising, so it doesn't sound like what worked for you is going to work for me. I was given Ursodiol 300 mgs 3 times a day but haven't started yet because I got the flu. I didn't want to take it until I got rid of this bug. Do you belong to an organization for PBC? I don't know where to go from here. I am not sure that my GI has dealt with this before and I am thinking of asking for a referral. Any advice would be appreciated! Tracy
  12. Christmas

    Silver Bells is my all-time favorite - although there many very close runners-up. I listen to Christmas music beginning on Thanksgiving and don't stop until New Year's Day. We have a local radio station that starts playing Christmas music the Friday after Thanksgiving 24/7 through Christmas. We have another station that plays it all day every weekend between Thanksgiving and Christmas. I love Brad Paisley and bought his new Christmas album. There is a song on there that he wrote when he was a little boy. At the age of 13 he performed this song at Jamboree USA at the Capitol Music Hall in Wheeling, WV. The Jamboree used to be broadcast live every Saturday night on WWVA, but I don't know if they still do this. Anyway, on the album the song begins with the recording of his performance at age 13, and then switches to Brad singing it today. It gives me goosebumps every time - it is a traditional Christmas song about the the birth of Jesus and it so sweet. Sorry for such a long answer to a simple question! Tracy
  13. For those of you in the Columbus area (and Mamaw over in PA), I was at the new Raisin Rack store yesterday. The shelves are not completely stocked yet - there were boxes in the aisles with employees working feverishly to complete the task. I wiped out some of the Tinkyada they had on the shelf (they had more in boxes though) . It feels much more spacious than the old location across the road. The best part was the deli - I didn't check it out the last time we were at the old store. My fiancee was hungry from not eating anything all day (he was at the hospital with me) and while I was loading my cart with Kinni-toos, Tinkyada and Ener-G Papa's Loaf, he went to the deli to get a sandwich for himself. He tracked me down - so excited - that they would make a sandwich for me on gluten-free bread! This was the first time that I have ever eaten a gluten-free sandwich away from home! Wow - what a feeling! It was pretty good too! Tracy
  14. Nature's Path are really good, but all of the places that I used to buy them have stopped carrying them. I am glad you guys posted online places to buy them. Thanks! Tracy
  15. ooooooooh - this sounds good! I always loved pink cakes! Thanks for sharing. Tracy
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