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JaneWhoLovesRain

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Everything posted by JaneWhoLovesRain

  1. JaneWhoLovesRain
    Hi jlaw - I read your other post in which you said you were diagnosed with scabies before dh. That is my story also, except I still haven't been diagnosed with dh, in fact my biopsy for that came out negative but I found out after the test that it was taken from a lesion, not a clean part of my skin so it was destined for failure from the start . So I...
  2. JaneWhoLovesRain
    I buy this yogurt because 1) it tastes good and 2) it clearly says certified gluten free on the label. I bought a bunch today, not even looking at the label because it's always said "gluten free." I just pulled one out of the refrigerator to eat and NOWHERE AT ALL does it say gluten free, not on any of them!!! Anyone know anything about this? Did they...
  3. JaneWhoLovesRain
    Another post I read got me thinking - how does one get a second opinion on a biopsy? Is there any place in the USA that "specializes" in celiac disease? I would think somewhere like that would be the place to go. Does the original place of biopsy even keep the specimin or is it on slides? I'm not at all sure how this works. Would I have to go through...
  4. JaneWhoLovesRain
    Here are my pics. (And let me also add I haven't been officially diagnosed either so I wasn't sure if I should post or not but since the above two posters are in the same boat I decided to go ahead. I do hope someone with a positive biopsy will post.) Some of these are rather gross, sorry!! http://i1172.photobucket.com/albums/r571/janerane/IMG_...
  5. JaneWhoLovesRain
    Misty - that is strange. It will be interesting to hear what your doctor has to say about this. There is a good chance you had a false negative reading. From what I understand this is fairly common. What kind of doctor took the biopsy and do you know if it was taken next to a lesion rather than from a lesion? The only celiac test I've had was a skin...
  6. JaneWhoLovesRain
    Oh Mat, I also have suffered from exercise induced hives, but not quite as bad as yours. My hives (big gigantic welts) are mostly on my thighs and rear-end and like yours much worse at pressure points. For me they occur mainly in the cold weather. Any kind of exercise will make them come out, even simple walking, but I have no problem with snow shoveling...
  7. JaneWhoLovesRain
    Some look very similar to what I have and some not at all. What I've never had are actual blisters, as in the big ones. It's possible I've had tiny ones that never really showed because I scratched so hard. But the big ones - never. Wondering if any of you had them, or not had them? Jane
  8. JaneWhoLovesRain
    Jenni - what is the home testing kit? I've never heard of it but sounds like something I would like to try (since no doctor believes I have celiac.) Is it something for which you have to eat gluten in order for it to work right? Jane
  9. JaneWhoLovesRain
    Thank you for the replies. I read the link Skylark posted and felt confident that this product was okay but then read the later posts and now I'm not so sure. The company says they remove the barley, but how do they do that? hmmmm. I felt like I was getting hidden glutten this week. I have been very good at watching labels, trying to keep vertigo at...
  10. JaneWhoLovesRain
    I know this topic has come up before, I just did a search and saw many posts here and elsewhere. I'm looking for current info. Do you drink this and if so do you have a reaction? I called the mfg a couple months ago and was assured it is gluten-free, even though it isn't labeled so (despite her tellng me it is on the label). So I have continued to drink...
  11. JaneWhoLovesRain
    Hi Unhappy (I'm unhappy too if it's any consolation) I started having severe vertigo attacks almost 5 years ago (hours long, can' move). Was diagnosed with meniere's, mav, virus, bppv, etc. Every doctor said something different, nothing conclusive. I went gluten free almost 2 and a half years ago after hearing people at menieres.com say it helped them...
  12. JaneWhoLovesRain
    Raven, A lot of skin biopsies for itchy things come back rather non-specific but the immunofluorescence is what is important for diagnosing DH. My biopsy was done the beginning of April and the testing of both the H&E and imm were done at the same time and I had the results a week later for both. I'm surprised to hear you have to wait 2-3 weeks...
  13. JaneWhoLovesRain
    I recently had a lot of blood work done to look for auto-immune disorders including ANA testing (no celiac specific tests were done though). Everything came out normal. If celiac is an auto-immune disorder would my normal test results rule out celiac as a diagnosis? Jane
  14. JaneWhoLovesRain
    JNB - that's why I added the "or maybe they are stupid" at the end of my post. I was referring to the doctor who told me that who obviously doesn't know a thing about dh. Yes, it is a horrible unrelenting itching rash. The worst I have ever had. He told me I had scabies, because that itchs something awful, also. But I have nothing in the normal scabies...
  15. JaneWhoLovesRain

    is this you the one that is emailing me ..lol

  16. JaneWhoLovesRain

    is this you the one that is emailing me ..lol

  17. JaneWhoLovesRain
    Oh Cougie, I'm not sure if that would call for a congratulations or not but it definitely calls for a "you poor girl."
  18. JaneWhoLovesRain
    mom23boys - that makes me laugh. I don't know why all the doctors I see won't even consider me as having dh. Maybe I really don't have it or maybe they are just closed minded. One said it's definitley not dh because dh doesn't itch. (or maybe they are just stupid.)
  19. JaneWhoLovesRain
    It's hard to tell because it is such a close up but it does appear to be similar to mine. However all medical personnel I've seen are convinced I don't have DH. Your description also sounds like it. Mine would also burn a day or two before breaking out, this is a classic symptom. Also I found showers to be so painful, both from the water hitting me and...
  20. JaneWhoLovesRain
    Okay, so only 2 people out of all that have read this post have said they have had one or both of my mentioned symptoms. Does tht mean that these symptoms are most likely not gluten related? Or is is that most people are lurkers rather than responders? Just curious. Jane
  21. JaneWhoLovesRain
    What are digestive enzymes and how do I take them? Thanks, Jane
  22. JaneWhoLovesRain
    Squirming - 37% false negative, wow! not very good odds. I couldn't believe it when he told me she biopsied the lesion. I even had to remind her beforehand she had to take a special biopsy for dh. She was just going to do a routine punch one and told me that dh would show on that if I had it. She even said she was going to biopsy next to the lesion. ...
  23. JaneWhoLovesRain
    Raven and gluten-free - thank you for your response! I haven't been 100% gluten free but close to it. I suspect there is cc in what I eat (such as arrowhead puffed rice) and not everything I have been eating is labeled gluten free, but I assume it is, such as tomato sauce. I've been posting in the DH part of this forum as I suspect I have DH even though...
  24. JaneWhoLovesRain
    1) I have horrible intestinal noises - borborygmus. This is not the usual stomach growling when hungry kind of noise, but comes within the large intestine. They are loud, embarrasingly so. When they occur I can feel movement from within my intestines, almost painful and pressure like. The movement follows from one end of my instestines to the other and...
  25. JaneWhoLovesRain
    Raz - did your doctor take a biopsy? Your descriptions sound so much like mine but I can't even get a doctor to consider DH. They are so sure this isn't my problem. Jane
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