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esammarie

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Everything posted by esammarie

  1. esammarie
    I am so glad to hear someone else had this experience and I love your boss's decree! Thank you so much for sharing. It really helps!
  2. esammarie
    Oh, that's really good to know! I will look into it. Thank you so much!
  3. esammarie
    Welcome to this scary yet comforting and healing place called "I have celiac disease!" I was diagnosed only a month ago and I have found this site ENORMOUSLY helpful and comforting. I am not experienced enough, I don't think, to offer much advice except to say that I felt that feeling of sadness, of anger, of hopelessness. It seemed so enormous - ALL those...
  4. esammarie
    This is very funny! Thanks for sharing it!
  5. esammarie
    Three times now, since going gluten-free after the diagnosis of DH and celiac, my "plague" or DH has erupted after eating lunch at work. Each time I had a super-yummy completely gluten-free lunch: a gluten-free Applegate Farms turkey dog on Kinnikinnik gluten-free brown bread with gluten-free mustard and some fresh lettuce. Today it was a GlutenFreeda's gluten...
  6. esammarie
    I've had fibromyalgia since 1988 and was diagnosed with celiac disease with dermatitis herpetiformis last month. For my fibro, I take 40 mgs of amitriptyline (Elavil) every night - have on and off for years. It was the first treatment back in 88 and the best for me, though I have to say that since the celiac diagnosis my fibro has been acting up, but that...
  7. esammarie
    My DH was discovered by the Physician Assistant Sheila Mayo in the Dermatology dept. at Emory Clinic - Clifton Road. She works under Dr. Michael Sarradet. Dr. Jamie MacKelfresh also in the same Derm. dept. specializes in DH and she's the one who read my biopsies and diagnosed the DH. It can be tough to get an appt. with the doctors but you can get in pretty...
  8. esammarie
    I'm with you; the pathophysiology of DH is quite interesting. There are some great online discussions to check out - they really helped me understand my DH and why it does what it does: Open Original Shared Link (this is not written for the average lay person and so the very medical terminology can be a bit tough but it's a really thorough discussion of...
  9. esammarie
    How fabulous!!!! It is worth bragging about. The rash, which I call Plague, can look terrible and make you feel worse. I, too, feel elated that my knees don't look so purple and scabby. The scars are there but they aren't as angry looking and new breakouts of Plague haven't happened since I was diagnosed and went gluten free in September. Congratulations...
  10. esammarie
    Oh my goodness!!! I am so sorry you are going through this! Autoimmune diseases definitely are linked. If you have one, it's more likely that you'll have another or another. There are several articles and reports about this on this website and on trusted sources like www.csaceliacs.org, the website of the Celiac Sprue Association. I found the book Gluten...
  11. esammarie
    Welcome! I, too, am new to this. Just diagnosed a few weeks ago. I too, have felt depressed and anxious but have been working through the grief stages and moving on the living and loving stages. I found the following books really, really helpful: Living Gluten-Free for Dummies and Gluten-Free Cooking for Dummies. Got them on (Company Name Removed -...
  12. esammarie

    ARCHIVED The Dh Rash

    esammarie replied to Glamour's topic in Dermatitis Herpetiformis

    Yes, that certainly does sound like DH. I have it - confirmed by biopsy of perilesional skin and all positive antibody blood tests plus positive GI biopsy. Definitely do see a dermatologist. That's who diagnosed my rash - I thought I had some allergy but couldn't figure out to what. It was a shock to get the DH diagnosis, but good because it led to the rest...
  13. esammarie
    I share the concern about the amount of sugar and carbs, especially from legume flours that can cause gas and bloating, consumed all at once. Before suspecting contamination or a celiac issue, I'd think about the digestion problems resulting from consuming three donuts with the ingredients they contain - and while your GI system is still trying to heal from...
  14. esammarie
    Thanks, friends, for all of your advice and support. I decided to have the endoscopic exam and I am glad I did because not only did it show "severe scalloping" and damage to the duodenum to confirm the celiac disease diagnosis, they also found a nasty throat infection and esophagitis resulting from the infection, which explains my difficulties swallowing...
  15. esammarie
    I am really lucky. I went to the dermatologist after my primary doctor didn't know what this recurring rash was. I've had it on and off for two years. On my elbows, knees, sometimes spreading to my arms and my feet. I thought I was allergic to something and went crazy and spent a lot of money changing shampoos, conditioners, skin cleansers, makeup, etc. I...
  16. esammarie
    Thanks so much, to each and every one of you! I talked with the nurse practioner in the GI dept (I work for a major research university with a major healthcare system) and explained how I was feeling really sick - haven't been to work since last Wednesday because of the GI symptoms and the intensely itching rash and I am just feeling depressed by all of this...
  17. esammarie
    Would that be related to the brilliant irony of Tom T. Hall? Love it!
  18. esammarie
    thank you! I really appreciate your perspective and I am so sorry you had to suffer all of that. I am glad you are doing better!
  19. esammarie
    Thank you!!!! I know the small intestine biopsy can show nothing for folks with DH. It just seems silly to waste the money - especially now when there is a raging debate about health care reform and "over use" of "the system." You are one of several people who have said the same thing. I just want to be well and happy. Thank you!
  20. esammarie
    For those of you with DH, can you please help? I had two positive skin biopsies - first of lesional skin and then, because the first suggested DH, of peri-lesional skin by immunofluorescence. Came back with DH diagnosis. Had blood tests and they came back like this: 313 for T. Transg IGA. 79 for A-Gliadin IGG and 205 for A-Gliladin IGA; A-Endomysial AB =...
  21. esammarie
    To KahlelFamily - that rash sounds definitely like DH. I am so sorry you've had to suffer like this! Did they tell you to try corticosteroid cream?
  22. esammarie
    Thanks for the advice! It seems strange to have to suffer towards a biopsy when the blood work and the skin biopsies are pretty clear - there's no doubt about it. I am thinking of canceling the biopsy, especially since it's not foolproof and it has some risk. I just want to feel better! As soon as the second skin biopsy with immunofluorescence came back with...
  23. esammarie
    I don't understand it, either, but the doctor says I have to do this. I read and read and it seemed that the second biopsy of peri-lesional skin that confirmed DH by immunofluorescence, which it did, plus all the positive blood tests (all very positive and with high titers) that it was a done deal. The doc wants the trifecta - so I have to poison myself,...
  24. esammarie
    Thank you all for sharing your stories. They really calm me and help me feel less frightened and sad. Though I do feel sad. I developed two years ago what last month was diagnosed as dermatitis herpetiformis a few months after having the Nissen Fundoplication surgery to correct horrible acid reflux. That procedure was much needed and made a world of difference...
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