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JaneWhoLovesRain

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Everything posted by JaneWhoLovesRain

  1. JaneWhoLovesRain
    Thanks for your input, it is very helpful. I have read they can be a vitamin B deficiency, yeast or possible baterial infection. I hope it is as simple as a vitamin b deficieny. I read this is rare in the US because most of our cereals and breads are fortified with vitamins. But since I'm not eating fortified breads and cereals or dairy products or red...
  2. JaneWhoLovesRain
    I know these can be related to celiac when one is actively eating gluten but I have been gluten-free for 3 years so why would I suddenly get these when I haven't had them before? They look awful, feel awful and scare me because now I think there is some underlying disease I have that is causing them. I believe the medical term is angular cheilitis or perleche...
  3. JaneWhoLovesRain
    Yes, IrishHeart, that is who I saw. Thank you for giving me his name. I can see why you like him so much. Too bad there aren't more doctors like him. Jane
  4. JaneWhoLovesRain
    I finally has my appt with the GI doctor this week. I made the appt in November right after I found I tested positive for the gene and this was the first available so it's been a wait! He couldn't have been nicer, I don't think I have ever had a doctor who sat there and took the time to patiently listen and ask questions as if he had all the time in the...
  5. JaneWhoLovesRain
    I think I need to clarify. I am referring specifcally to having iodine while having dermatitis herpetiformis, because iodine is know to aggravate dh; I'm not rerfering to having the contrast agent if there is a known allergy (not sensitivity) to shellfish or iodine, that is a definite contradiction. I'm wondering if the iodine will aggravate things internally...
  6. JaneWhoLovesRain
    I'm wondering if it is safe to have a ct scan with contrast, seeing that the contrast agent has iodine in it and one of the questions always asked if if one is allergic to iodine. I recently had a ct scan and refused the contrast and told the technician I have had a problem with topical iodine in that I break out in blisters if it is applied to my skin...
  7. JaneWhoLovesRain
    Someone correct me if I am wrong, but I believe should it come to you having a biopsy the steroids will affect those resuls (false negative). Just something to keep in mind.
  8. JaneWhoLovesRain
    Well, it's sure in the right spot for DH. Do you have it anywhere else? It looks similar to my rash. I'd say the only way to know for sure is to have it biopsied but unfortunately that isn't always accurate. Jane
  9. JaneWhoLovesRain
    Statistically wise it's a long shot that I have it but considering the rash I've had for almost a year (it's 95% gone after a flare up when I experimented with gluten in Sept/Oct) as well as other odd assorted problems throughout the years I think it is very possible. If it wasn't for the fear that a lot of gluten may posssibly give me vertigo I would do...
  10. JaneWhoLovesRain
    I asked my PCP if he could test me for the gene last month. He did it without any questions. If I had known it was going to be that easy I would have asked him months ago. This morning I found out I tested positive for one of the celiac genes. He told me (through his secretary) if I'm not having any GI symptoms there is no need to see a GI doctor. He...
  11. JaneWhoLovesRain
    bthack - I don't suffer from water urticaria as you do but I have a similar allergy, I break out in terrible hives if I walk or run or exercise in cold weather. I went gluten-free 2.5 years ago and this problem greatly diminished. I was shocked, to say the least.. I don't know if your allergy is related to gluten or not but it is certainly worth taking...
  12. JaneWhoLovesRain
    Peg - I have suffered from eposodic severe vertigo attacks for the last 5 years. I went gluten-free 2.5 years ago and have only had 2 attacks since then (had about 8 in the previous 2.5 years) but I still often feel off balance. But to date no doctor has ever confirmed or even suggested any kind of connection between the two. I was diagnosed with Meniere...
  13. JaneWhoLovesRain
    Jestgar - thank you for setting me straight! Your way sounds so much better than my way.
  14. JaneWhoLovesRain
    On the opening page of this web site is the following statement "If a person with the disorder continues to eat gluten, studies have shown that he or she will increase their chances of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population." I wonder if someone could explain this to me because I am not sure I am reading...
  15. JaneWhoLovesRain
    Really good scratcher - oh my gosh, that looks nearly identical to my rash when I was at my worst!! However, I was never "officially diagnosed" with celiac, was told scabies/eczema/allergy. My dh biopsy was negative. Mine came 2 years after going gluten-free, I think I had cc from my breakfast cereal. After giving the cereal up it went away but took...
  16. JaneWhoLovesRain
    Some doctors are useless when it comes to diagnosing dh. Converstion I had with the first doctor I saw went something like this - Dr: You have eczema. Me: No I don't. Dr: Yes, you do. Do you have family that has allergies? Me: Yes. Dr: Well it's eczema, it goes hand in hand with allergies. Me: But it itches terribly, It's waking me up in the night...
  17. JaneWhoLovesRain
    Gatita - Just your one picture looks so much like my rash (you can see more of my pics on the DH photo bank post). Not that that would be much help to your because I tested negative for DH, much to my surprise and disappointment. However I had been gluten-free for a couple years before getting the rash and there is a good chance the biopsy was not taken...
  18. JaneWhoLovesRain
    Laurap - I have NOT been officially diagnosed with celiac but to me it is important that I am. Problem is, I am currently eating gluten-free and am not willing to "glutenate" myself for this test - main reason being that I suffer from severe vertigo attacks and feel they have been caused in part by gluten, but there is no proof in this, it may be purely...
  19. JaneWhoLovesRain
    Sharilee - THANK YOU SO MUCH for doing all that reasearch. I really appreciate that you took the time for this. Based on what you found I will not be ordering the test and having it sent elsewhere. I don't want to be a partner in crime, the law is the law and I will go along with that. I'll go through my doctor and hopefully he will agree to it. Thanks...
  20. JaneWhoLovesRain
    Sharilee - it says so on their web site
  21. JaneWhoLovesRain
    I want to order the mouth swab test (Gluten Sensitivity Gene Test (Molecular HLA-DQB1 analysis)) from Enterolab to see if I have one of the celiac genes. However, my state is one of the two in the country that does not allow the paitent to directly purchase this test, it must be ordered through the doctor. Would it be ethically wrong for me to order this...
  22. JaneWhoLovesRain
    Azure - I had to open up a photobucket account and post pictures there and then post links to that site. I haven't been able to figure out how to post them directly here. I hope you can post, I'd love to see pics that have been confirmed by diagnosis.
  23. JaneWhoLovesRain
    OH!!! that must by why, the one I want to edit is 48 hours plus. Rats!
  24. JaneWhoLovesRain
    I want to edit something I wrote in a previous post but when I pull up the post I don't have that option. Yet on other posts of mine I do have the option. I'm a little perplexed about this. Any idea why I can on some and can't on others? Jane
  25. JaneWhoLovesRain
    Good gosh!! Penny, your legs looks so much like what my hips and arms looked like back in April. My biopsy for dh came out negative but I still don't believe that I don't have dh. I agree with you - I also want a postive test so I say to the doctors see, I told you so, especially to the one dermo who told me I couldn't possibly have dh because that doesn...
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