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About jodikris

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  1. Happy birthday and may God bless you today!

  2. Guys I am not disagreeing with anything you are saying but here is a little info: They have not gotten ONE test postive for celiac. The only reason they even tested me was that Dapsone was the only thing that seemed to cure my skin issue. WIth that being said even the dermatologist is not sure what i have is celiac BECAUSE I have had a gastric bypass and there is a study (ONE) that has found a skin condition that can occur because of this. I had some symptoms of celiac: Frothy foul smelling stools, frequent diarreah.....but then I had an IV of iron and it all went away. HOnestly I have no idea what to believe anymore. I have seen 4 specialists and they all say I do not have celiac just a skin problem that reacts to Dapsone which they CLAIM is not proof of celiac. I have cried and cried about this. No one in my family has any allergies and both my parents have been tested for this also with negative results. I also am not on my first pregnancy. WIth my DD I had the same rash and it was AWFUL. I started with this rash in 2003 planning my wedding. I Had my gastric surgery in 2001. At the time they all said it was stress but it went away...then I got pregnant and the rash was AWFUL. My dd was born full term healthy at 7lbs and has no health issue and no celiac (i had her tested).... This pregnancy has been easy and pain free other then the rash I just got. I am planning to make ONE LAST attempt at a positive diagnosis based one what you guys have said. I ordered a genetic test. If that tells me I don't carry the genes for it then there is NO POSSIBLE way I have it right? Over the years I have popped on here on and off and honestly I have never met a group of more supportive and educated people in my life. I appreciate and respect your opinions but I am sure after reading what I have been through you guys can understand why I am confused..... At one time I thought my skin test was positive but when reading my charts MYSELF i found that the biopsy SUGGESTED celiac (one of FIVE taken) and the rest said NOT CELIAC and take my word for it I had 5 skin biopsies.....I WANT TO KNOW what is wrong. I want to know what to do to cure it....but even when I went gluten free for almost a year...the rash came back without dapsone. This makes me think I do have a skin condition that is caused by a lack of some vitamin from my gastric surgery. I suspect I am not the only WLS patient with this problem but since the WLS is relatively new there is barely any data to support this theory the doctors have.
  3. I am currently 19 weeks pregnant and my DH has come back. I am not living gluten free because after biospies both internal and external 4 doctors have decided I only have the skin problem not the intestinal issues. I avoid wheat but I do eat some on occassion. I haven't had a break out in 8 months and got one this morning. I am scared to take my Dapsone while pregnant. I left a msg with my OBGYN but I wanted to see what you guys thought......
  4. I feel the same way ! I went to a nutritionist this morning. She thinks I may have Gluten Ataxia because I have been having what I can only describe as "spells" of weakness where I can't move my arms and head around. I am offically gluten free almost an entire week. It's a big step for me. She also gave me a ton of tips and label reading lessons. She is so nice. I wanted to cry when I left because I felt like she really understood how I felt. I am so anemic right now I am weak all the time. Hopefully the more time that passes the better I will feel..... Jodi
  5. Thank you guys all for the support. It's day 3 for me officially gluten free. I am still itching. I am pretty miserable. I was back in the hospital last night feeling really weak and disoriented....they STILL are blaming the dapson. I am kinda confused myself now....
  6. Thank you guys both for your support. I was BACK in the ER yesterday. I Passed out at work. I am feeling better today. THey are doing a battery of tests on me. They still are blaming the dapson. I feel like I NEED the medicine because I am so itchy I am miserable. I aruged with the doctor about it but he said he is convinced it is causing the problems and NOT the celiac. I don't know what to think. THe doctors are SO frustrating!!!!!!!!!!! Jodi
  7. Over the past few years I have hopped on and off of this site. I think I am in denial that I have DH and Celiac. For about a year the Dapsone allowed me to live in this denial with only small break outs now and then. When I came to this site I found support and encouragement but I kept leaving. This weekend I was in the hospital getting blood transfusions for what they THINK is dapsone related severe anemia. I was away from my family and really started thinking that Celiac could hurt me. I have even avoided the View so I don't have to see Elizabeth talk about it. Anything to avoid the reality that I have this. My dad has cancer. It's stage 4. I have to run our business on my own. What if I am not here to do all I have to do to keep it going? I guess I am here asking you guys once again to welcome me back and help me deal with this. No one around me gets how this gets me down. They all basically think I just need to eliminate wheat and no problem. It's not that simple for me. I feel so restricted and not normal. Plus I am itching within an inch of my life and look horrible. Any words of wisdom would be greatly appreciated. Jodi
  8. Okay so I have been SORT Of diagnosed with DH over the past 2-3 years. I have been taking Dapsone. I started feeling kinda bad and I went in for a blood test. I was SEVERELY anemic to the point where I spent this weekend in the hospital undergoing blood transfusions. Can you guys tell me if this is from the Dapsone? I am so sad. I can't stop itching now. It's on my nose, chin, under my arms, on my waist, kneecaps, ankles..etc. I have elimnated the wheat again but I am frustrated that no gastroenterologist can tell me if I have Celiac or not....can you have DH and NOT have celiac?? Jodi
  9. There is a lady on ebay selling gluten free pizza...her store address is: http://stores.ebay.com/Madwoman-Gluten-Free-Foods they are FABULOUS!!!!!!!!!!!!! and she is VERY VERY nice and helpful and when I had a shipping problem (a small error) she fixed it and reshipped. SHE IS WONDERFUL!!!
  10. I just got a fax from my dermatologist at my request to SEE my biopsy results...ONE test came back positive ONE came back negative for DH....is this possible>!>!>!>!>! So they are acting like I am crazy to be concerned about this...lets examine this...I am having to change my ENTIRE LIFE for a disease no one can tell me for sure that I have!! WTF!!!!!!! ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Someone tell me its not me! I have a terrible rash on my: knees, elbows, back, waist and hair/chin line I react to Dapsome I have stomach problems my you know what sticks to the bowl.... SO do I have DH or do I not have it? Do I have celiac disease or do I not have it?!
  11. WOW you guys know your stuff. The next time I get on the computer at my house I will send anyone interested pictures of my DH...it gets very bad. Right now I have bloody arms from scratching...how can anyone look at that and not say: SOMETHING IS VERY WRONG HERE! My Dermatologist has been mine for 16 years..and he could NOT cure this! that is what he gave me the biopsy...im actually really mad after reading some of yall went through the same thing! I almost HOPE i have it now so I can say something to him. I would like to say...Okay Doc now how about I tell YOU how to treat me since i had to tell YOU i had celiac disease!
  12. Thanks guys....i really needed to hear these things...if My bloodwork is not positive I am going to go back to the dermatologist and force him to biopsy me again!
  13. There are only 2 groups where I live and he was a member of the biggest group. On thursday I get the results if It says negative I am still going gluten free. If my rash goes away if I stop eating Gluten...then wasn't it the gluten... I did find this article : http://www.obesitysanswer.com/index.php?cid=1371 Maybe this is why I have struggled with my weight my entire life! Thanks for the support guys...I cried the whole way to work from the doctor...I just feel like I am never gonna find out for sure If I have it or not....
  14. Thank you nini....I just felt like a freak for going in there and saying I think I have celiac disease please test me. He was like WHat makes you think that...so I showed him the rash and told him what my biopsy said. So he says...well here is a PAMPHLET on gas (which told me not to eat gassy foods) and let's do a blood test...but I wanna write a paper on you if you have it cuz it would be a first for me. He wasn't rude really just doubting me. I mean maybe I don't have it...but why then do I have DH? Was the biospy wrong? I am really upset about this... Now I am scared the test will come back negative and I will be at square one...still having an itchy rash but no idea why!
  15. Okay so I go today and basically am told since I am fat if I have it its WEIRD so WEIRD he wants to write a paper on me. I did get a positive test for DH....he then told me to go eat a biscuit and not worry about it. I AM NOT eating gluten until I know for sure on Thursday.... IM SO embarrassed!
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