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JaneWhoLovesRain

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Everything posted by JaneWhoLovesRain

  1. JaneWhoLovesRain
    Raven, I'm sorry to read all that you are going through. I'm in a similar boat, trying to get answers but getting nowhere. I had a visit with a very mean dermatologist today, but not quite as mean as yours. Your symptoms and history are very suggestive of DH, I don't know why your doctor had to be such a jerk about it. I can't add any advice...
  2. JaneWhoLovesRain
    Yes, it did "itch like crazy." The pics are a couple months old, I finally figured out how to post them last night. The rash is now 95% gone, I have a lingering area on each hip, it's not very itchy anymore. It's been 6 months now since I first started itching. Today I saw the dermotologist. I didn't see him before, just his nurse practitioner who is...
  3. JaneWhoLovesRain
    I hope I'm posting this in the right way so that the links will work. I've had a heck of a time trying to figure out how to do this! If you can, please take a look at the links and let me what you think - do they look like dh? http://i1172.photobucket.com/albums/r571/janerane/IMG_2435.webp http://i1172.photobucket.com/albums/r571/janerane/IMG_2344.webp...
  4. JaneWhoLovesRain
    Your rash looks so much like mine!!! In additiona, I had areas of thickened, red, inflammed looking skin, probably from so much scratching. And what did my doctor say I had?? scabies. Ugh. He said I couldn't possibly have dh because dh doesn't itch. (I fired him, doesn't itch my eye, that's the main symptom.) I had a biopsy and that was rather non-specific...
  5. JaneWhoLovesRain
    I just posted something about cashews before reading your post. I've been feeling off a few days and looked at all my labels to make sure I wasn't getting any gluten in me. The cashew label says "may contain trace amounts of . . . . wheat." I would guess there is some cc in manufacturing.
  6. JaneWhoLovesRain
    Ugh, I don't like that phrase, mostly because it doesn't tell me anything for sure. Does anyone know, how likely is is that something with this on the label actually does contain wheat? Is it 95% of the time? 1% of the time? 50% of the time? impossible to say? Does it ALWAYS have wheat? I've been feeling yukky the last couple of days and for me that...
  7. JaneWhoLovesRain
    Prickly - thank you so much for the links. I am going to print them out and read them. And thank you for added info, all vere interesting. As you said, very often pathology results are one person's opinon. Someone else may read them differenlty. It's not always black and white. Considering all that I am reading between the lines of the report I think...
  8. JaneWhoLovesRain
    I'm not 100% convinced I don't have DH (and I'm probably way in the minority in wishing I had tested positive). I've been gluten-free for a little over 2 years. The only gluten I have eaten is from cc and 3 or 4 times when I have snitched a little cookie or something (and nothing was snitched in weeks before I broke out in a rash). I've been extremely...
  9. JaneWhoLovesRain
    No, it doesn't answer at all what my problem is!!! That is still a big question mark. I had an appt this morning and she told me what the report said and then gave me a copy. She (nurse practioner) seemed kind of puzzled by it as she was reading it. It wasn't until I got home after work that I sat down and read it myself. The main findings are subtle...
  10. JaneWhoLovesRain
    I admit I'm kind of disappointed. I really wanted closure to this. It states "antibodies to IgG and IgA are negative . . . level sections do not reveal evidence of dermatitis herpetiformis." The description for the two other biopsies taken are full of big words which scare the heck out of me. I've searched them all, most I don't understand, all seem...
  11. JaneWhoLovesRain
    IrishHeart, thank your for your research. I really appreciate it. Looks like 99% of the time DH most likely = celiac. I don't have any known thyroid problems - all routine thyroid tests have always come out normal. The doctor (actually it was a nurse practioner) didn't say anything about being on or not being on a gluten-free diet. Since she is so...
  12. JaneWhoLovesRain
    Oh gosh, I don't want to get into a debate either, but this is what I am interested in, if there are any other conditions that can cause DH. I want to cover all bases should I test postive for dh. I've been misdiagnosed before and unfortunatly know that doctors make mistakes. If a doctor is going to assume I have celiac bases on a positive dh biopsy when...
  13. JaneWhoLovesRain
    I haven't contacted him yet. I called my dermo's office and they were able to change my appt to the next day when I told them how miserable I was. I figured that was the quickest way I would be able to get it biopsied. Should I find I actually do have dh, I will be calling the doctor you suggested. I'm not 100% confident the biopsy was taken correctly...
  14. JaneWhoLovesRain
    Yup, that's what I mean - are ALL (100%) cases of DH because of gluten/celiac or is there something else that can cause it. I know other things, such as iodine, can aggravate it but I was wondering if there is something else that actually casuses it that has nothing to do with celiac or gluten. I guess the reason I am asking is because I should be getting...
  15. JaneWhoLovesRain
    Seems somewhere in all my reading I saw that there are a couple of other rare causes of DH that are not gluten related. 95% + of the time it is DH but on occassion it is something else. I've tried to find the original article or more on this but can't. Anyone know if in fact something else can cause DH? Jane
  16. JaneWhoLovesRain
    Melikamaui - May I ask what your symptoms are that make your doctor think you have Meniere's? I don't see where you mention vertigo and that is the classic symptom (though some will argue that and say if you have loss of hearing loss w/out vertigo, you have "atypical" Meniere's. Along with the vertigo you also need hearing loss, fullness, pressure and tinnitus...
  17. JaneWhoLovesRain
    Does anyone find that their rash feels like sandpaper, very rough? As I run my hand over my lower back it reminds me so much of sandpaper. Maybe it is because these tiny little blister things have popped and now have scabs on them and that is creating a rough feeling. Sorry, that sounds kind of yukky!! My other rashy area don't feel quite that bad. ...
  18. JaneWhoLovesRain
    Since I was "diagnosed" with scabies I've been reading up on it and surprisingly I found that it does present with a bilateral symetric rash, always, they say. And the reason is because the rash isn't coming from scabie bites as many people think it is but it is coming from fecal matter (yuk) that the scabies leave in their burrows. This is then absorbed...
  19. JaneWhoLovesRain
    Thank you for the info. Do you know - is the "special staining" something that is done in the office at the time the sample is taken or is done later by the lab? Jane
  20. JaneWhoLovesRain
    I'm having my itchy, itchy rash biopsied on Monday (by the nurse practitioner, not the doctor, there is a months long wait to see him). The NP doesn't think it's dh, she says it doesn't look like it. She agrees with any of the 3 things my first dermo told me - lichen simplex chronicus, eczema or scabies and said the only way to know for sure is to biopsy...
  21. JaneWhoLovesRain
    People with celiac disease have to stay away from any toiletries that contain gluten, right? and not just those with dh but everyone? I did a search here to find out if cetaphil is safe and there seems to be some differing answers to this. Some of the posts were older so I also may be reading outdated material. Is there any consensus as to if cetaphil...
  22. JaneWhoLovesRain
    I mean I have no MAJOR gastro symptoms, but lots of minor ones which may or may not mean anything. I haven't yet been scoped and biopsied (except for colonoscopy, but I don't think that counts). I'm not knowingly consuming gluten, I am probably getting cross contamination or maybe from soap/shampoo/mouthwash etc. Good ideas and thoughts from everyone...
  23. JaneWhoLovesRain
    Yes, I'm trying to find a dermo who is dh knowledgable. The one I saw said dh doesn't itch. I don't have much confidence in him. I'm afraid I'll never get a definite yes or no as to if I have dh/celiac or not because there is no way I can gluten myself. I am seeing someone else next week. Hopefully she'll be better than the guy I saw.
  24. JaneWhoLovesRain
    Thank you for the referral Meggie and Irish. It's much appreciated. I know right where the BH office is. IF I have celiac disease (nothing has been determined yet) it is showing in the form of dermatitis herpetiformis as well as vertigo issues. My intestines seem to be okay. Do you think he could still help me or should I be seeing some other kind...
  25. JaneWhoLovesRain
    I have not been officialy diagnosed with DH and only first heard of it a couple of weeks ago. But even before I heard of it I thought how strange that my rash is symmetrical. Both elbows, both hips, both knees. Though when it first started it was on one side of my neck only. I'm continually breaking out in new spots and it seems almost all of them have...
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