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squirmingitch

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by squirmingitch

  1. squirmingitch
    I agree with WinterSong. Cross contamination is cross contamination & it will hurt you. Some people don't get any symptoms but it is still damaging their villi. Heck, there are celiacs who, when they were eating full gluten & didn't know they had celiac disease, had absolutely NO symptoms at all yet upon endoscopy had complete villous atrophy. Loves...
  2. squirmingitch
    I hear that!
  3. squirmingitch
    MGR, If I were you, I would call myself celiac & go with the endo report which says you are & screw the specialist who says you aren't. Who is to challenge you especially if you have the endo report? Sounds like you surely have dh & that's throwing everything off as far as blood panel. The damage in our intestines tends to be patchier than celiacs...
  4. squirmingitch
    Big hugs to you sweetie! (((((HUGS)))))) If they did a celiac blood panel on you --- 60% of us with dh test false negative on the blood panel -- that's b/c the antibodies are in the skin (causing our dh - DUH!). And unless the skin biopsies were specifically looking for dh & NOT done right ON TOP OF a lesion then that's why they didn't know what it was...
  5. squirmingitch
    I don't understand why you have been off gluten for 2 weeks when I told you on Dec. 10th that YOU MUST BE ACTIVELY EATING GLUTEN UNTIL THE BIOPSY OR YOU WON'T KNOW IF IT'S A FALSE NEGATIVE OR A TRUE NEGATIVE. I am afraid you are working against yourself here. You seem to want a correct dx so badly yet you have in essence sabotaged your chances by going...
  6. squirmingitch
    YVW! No worries mate; everyone has to go at their own pace. We're here when you need it.
  7. squirmingitch
    Nora, could you please provide a link or reference for that info.? This is the 1st time I've ever heard the biopsy should be taken far from a lesion or behind the knees or inside of elbows.
  8. squirmingitch
    On the 1st biopsy you had, the derm was checking for cancer & that means he took a biopsy directly ON the lesion. There was no biopsy for autoimmune or dh done so that biopsy doesn't count. The second biopsy doesn't count b/c you had been on steroids. He says he did a test for autoimmune but you had been on steroids --- this will make false negatives...
  9. squirmingitch
    I'm super pressed for time at the moment but will get back to you asap. A couple things for now. IF YOU WANT TO GET AN OFFICIAL DX OF CELIAC DO NOT STOP EATING GLUTEN. DO NOT EAT GLUTEN LIGHT. You will have to be off the oral steroids for about 3 months & the topical for a bare minimum of a month. It's very difficult to get a celaic dx when you have dh...
  10. squirmingitch
    Okay, 1st off, who dx'd you with AS? What kind of doc? What tests did he/she do? And why did you go to that doc in the first place? Can you detail that more for us please? And by AS, you mean ankylosing spondylitis right? Do these places itch BEFORE you notice anything there? You itch & look & there's nothing there????? Then later the "bite" comes...
  11. squirmingitch
    I agree with what the others said.
  12. squirmingitch
    DH can present anywhere on the body. Just ask me. I've had it everywhere except mucus membranes. Bottom of my feet, hands, fingers, upper legs, lower legs, knees, elbows, neck, scalp, in my ears, in my belly button, on my nipples, collar bone, chest, breasts, stomach & pubic area, shoulders, any area of the back, any area of the arms, armpits, ankles...
  13. squirmingitch
    I think I've seen 2 postings on here (the dh forum) where ppl used the topical Dapsone (Actone? or something) & if I remember correctly, 1 said it helped & 1 said it didn't. You can give it a go & see.
  14. squirmingitch
    Ohhhhhh, nooooooo, steriods, topical or oral are no nono !!!!!! Especially the oral!!!!!! They will help a lot but the second the steroids are withdrawn the rash will punish in SPADES!!!!! You don't want to put her through that hell. This stuff is a b%$@#!!!! It can take 2 years or more for the antibodies to get out of the skin. We are all individuals ...
  15. squirmingitch
    I'm having major computer problems (repeatedly crashing) & am trying to fix it so I'll have to be brief. IMO that's dh!!!!! If you had been gluten-free when the biopsy was done then OF COURSE it would come back inconclusive or negative. If the biopsy was taken directly ON a lesion then it was done wrong & OF COURSE it would not be positive for dh...
  16. squirmingitch
    Are you still eating gluten? If so then you could get a biopsy for dh (dermatitis herpetiformis - the celiac rash). Do you get little water filled blisters?
  17. squirmingitch
    My hubs had bladder cancer & every year he has to have a cystoscopy to check for any recur. Now, this Urologist is really, really good at urology; he really is. Okay, so last year we did not know my hubs had celiac disease. We tell the doc he does now. There is always an antibiotic prescribed after a cysto to make sure no infection happens from the procedure...
  18. squirmingitch
    Red food coloring #3 is the one with iodine. Red #40 is fine. That's in the US --- other countries may be different.
  19. squirmingitch
    Continuing the progression of the lesions. These photos were taken today. They were much angrier looking a few days ago --- lobster red, but I could not bear to take photos of them at that point. They have been terribly painful & remain so. I have found the best thing at this point is Vaseline. And ice packs. But one can not spend all day laying on ones...
  20. squirmingitch
    Thanks dear. I doubt a GI has any clue about light therapy. And yes, sometimes you get the flesh eaters where you get 2 or 3 next to each other & then they all grow together to make one huge lesion. Maybe the topical Dapsone..... I don't know. Just have to talk to him & see. My other worry is that if I go the Tetracycline route that I am deathly...
  21. squirmingitch
    Thanks Shroomie. It does suck.
  22. squirmingitch
    Photos taken on 1/19/13. http://farm9.staticflickr.com/8086/8397268918_25a514e824_z.jpg Above is the flesh eating lesions you saw earlier. http://farm9.staticflickr.com/8329/8397268656_f95f1f68df.jpg Below is the underside of my breast. http://farm9.staticflickr.com/8232/8397268718_b204fa28b6.jpg Lesions on my front: http...
  23. squirmingitch
    Since dh can flare at any time until all the antibodies are out of our skin, I thought it would be good to show such as well as the progression of it as it ravages the skin. I have been absolutely strict gluten-free since Dec. of 2011. We have a gluten-free household & eat 99% whole foods. Have not eaten out at all. My dh had improved greatly upon going...
  24. squirmingitch
    DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.
  25. squirmingitch
    I'm really sorry you feel that way. The conversation didn't get squashed; it got moved ---- to here: and it takes a moderator to move it. I am not a moderator. You DO have ideas to contribute, things to discuss, photos to share & I hope you will reconsider your decision. No one said you could not do all those things. They just need to have...
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