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JaneWhoLovesRain

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  1. JaneWhoLovesRain

    ARCHIVED Doctor In Upstate Ny

    JaneWhoLovesRain posted a topic in Doctors

    Does anyone know of a good doctor in upstate NY (Saratoga-Troy-Schenectady-Albany area) who is knowledgable in non-intestinal celiac? And by that I mean gluten ataxia and/or DH.
  2. JaneWhoLovesRain
    oh shoot!! I was hoping testing could be done while being gluten-free. I've been gluten-free for two years because it was suggested my problems with vertigo may be gluten related. Over the last two months I've developed an unbearable itchy rash (seems to be bilaterally symmetric) which has been diagnosed as scabies. I have no idea where scabies would...
  3. JaneWhoLovesRain
    I know if one is going to have a small bowel biopsy they need to eat a lot of gluten in the weeks beforehand but does the same go for blood testing? Or will the results of blood testing be the same whether or not someone has had recent gluten? Specifically what blood tests should one be given? Thanks, Jane
  4. JaneWhoLovesRain
    How much iodine are we supposed to eat a day, or should I say not eat? And how does one find the iodine content of food? I didn't realize yogurt was high in iodine. Is there too much for someone with dh?
  5. JaneWhoLovesRain
    I'm a little confused. Isn't maltodextrin on the safe list?
  6. JaneWhoLovesRain
    Yeah, he already thinks I'm looney tunes, that's why I don't want to bring something like this up unless I have a lot of evidence to back it up.
  7. JaneWhoLovesRain
    Yes, I really do need a diagnosis. I need closure and I need to know if I can ever eat gluten again. If I can't, so be it, I won't. But if gluten isn't my problem at all it sure would be nice to know and be able to have a peanut butter and jelly sandwich once again. Jane
  8. JaneWhoLovesRain
    A while ago I updated on my mortified/scabies post that I gave myself the iodine patch test over the weekend and there were no blisters. Well, I took a shower after that post and in scrubbing my arm found I do have a big band-aid sized blister there after all and I scrubbed it open. Does this mean I definitely have dh, or could it possible be a reaction...
  9. JaneWhoLovesRain
    Ugh, my rash is spreading. It's strange, the hip and neck (where it was really bad) are much better. My arms are worse, I keep getting new outbreaks near my knees, and it is creeping up my spine. The itching is still driving me crazy. And now I am starting to worry about getting secondary infections from all the scratching I am doing. Other than knees...
  10. JaneWhoLovesRain
    Oh gosh, I didn't know cetaphil has gluten in it. It's the store brand they used, and anti-bacterial, but I doubt it is for sensitive skin. I'll search to find the cetaphil thread. I have been gluten free for 2 years (for my undiagnosed vertigo/dizzy disorder). However, I am probably only 98% gluten-free. I'm sure there is cross contamination in some...
  11. JaneWhoLovesRain
    Hey, it's me again. I applied the scabies cream (permethrin) Tuesday night. By Wednesday afternoon the rash was looking better, there was less inflammation and today, Thursday, it looks a little better again. But it is still way bad enough that I won't wear short sleeves. And while my back wasn't that badly affected before, now the bottom 6 inches of...
  12. JaneWhoLovesRain
    I just did a search on scabies (on this site) and squirming you are right, there are endless posts of people who were told this is what they have. I've looked at pictures of both and they look pretty darn similar. I can't tell the difference in most of them. I think I was kind of hoping I would have dh as I have had so many unexplained problems...
  13. JaneWhoLovesRain
    I can't believe it, he said I have scabies. I am mortified. I even had to go to a new pharmacy to fill my prescription. I could not face the pharmacists that I know. I can not tell anyone I know about this. I don't understand how I got it, though. I do not share towels or linens or clothing with anyone, ever. I do not live or work in crowded conditions...
  14. JaneWhoLovesRain
    This might be a dumb questions but I'll ask anyway. Is the biopsy for dh something that it easily done in the doctor's office (similar to having a shave biopsy for a mole) or is it something that must be done in the hospital as an out patient? Jane
  15. JaneWhoLovesRain
    Birdy - my low blood sugar attacks have increased since going off glutten. I don't know if the two are connected or if it is because of the diruretic I take or some other unrealted reason. I never brought it up with my doctor either. I probably should but he considers me a hypocondriac and blows all my problems off, so frustrating. When I get a low...
  16. JaneWhoLovesRain
    does one see for DH? I'm guessing one starts with the dermo? and if one is positive for DH do you continue to see a dermo or do you go to a gastro? Or no doctor? And are either of these specialities up on gluten ataxia, which I think I may also have, or do they tend to dismiss it?
  17. JaneWhoLovesRain
    Not crazy, but brave. I don't think I could do that to myself. But also, I suffer from vertigo and I have a feeling that may be a glutten reaction. I could handle the rash getting worse and intestinal issues (which I don't have, yet) but I cannot handle vertigo. I hope for your sake your experiment works and you are able to learn for sure if you indeed...
  18. JaneWhoLovesRain
    Thank you all for your responses. While I don't want celiac I am kind of hoping this rash is DH and that I will then successfully go 100% gluten-free and both the rash and vertigo problems will clear up. I'm going back to the dermatologist Tuesday. My first visit a couple of weeks ago wasn't real productive. Since that time my rash has increased greatly...
  19. JaneWhoLovesRain
    Thank you so much for your responses. It seems hard to believe that a tiny speck of gluten can cause so much problems. But then again, so can 1 bee sting to those that have that allergy, same with peanuts. The rash seems to be spreading more, I can't wait to go to the doctor Tuesday, I only hope it is a productive visit. Ryniev, sounds like your visit...
  20. JaneWhoLovesRain
    Hi Bridy - I cut gluten out two years ago and have noticed a definite change in blood sugar. I have always tended to run a bit on the low side and get an occassional hypoglycemic attack but since cutting gluten out I have had many more episodes of low blood sugar, it seems anytime I do something strenuous it will come on and many times it occurs spontaneously...
  21. JaneWhoLovesRain

    ARCHIVED Doctor For Dh

    JaneWhoLovesRain posted a topic in Doctors

    If, in fact I have celiac, I have it in the form of dermatitis herpitiformis (sp?) rather than having intestinal issues. Nothing is sure at this point yet as I've only recently developed a rash which so much looks like dh. What kind of doctor should one see for this form? Does one still go to a gastro doctor or should one see a dermo? or is there someone...
  22. JaneWhoLovesRain
    Thank you so much for your responses. I'm shocked to think I might have celiac. Nothing is sure at this point though. My first thought when I was reading about dh in the medical encylopia last night was, my gosh, this describes my rash, symmetrical, very itchy and my second thought was when I read that it is usually related to gluten was, well I guess...
  23. JaneWhoLovesRain
    Do any of you suffer from vertigo or off balace feelings as part of your celiac disease? I started having severe vertigo attacks about 4+ years ago and have been unable to get a firm diagnosis for this because while my symptoms fit some parts of all the dizzy disorders they don't fit enough of any one to give a firm diagnosis. For instance, the vertigo...
  24. JaneWhoLovesRain
    I both love and hate reading all these. Love, because I see I'm not the only one who visits stupid doctors. And really and truly hate because it angers me so much that there are so many stupid doctors "practicing" out there and there are poor, unfortunate patients who place doctors next to God and believe everything they say. I haven't been officially...
  25. JaneWhoLovesRain

    The itch drove me crazy as well.....CRAZY. It took four years to be diagnosed as DH but then I had to insist that my derm. send me to a GI. Yep, full blown celiac disease. That was 12 years ago and despite me being my doc's most 'compliant celiac disease patient', it's back w/a vengeance. Flattened villi, major malabsorption, the whole bit. Wonder what his least compliant celiac disease patient looks like.

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