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sisterlynr

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Everything posted by sisterlynr

  1. sisterlynr
    Yes, that would be nice. I'm trying this out. . . . Yes . . . Ta Da! It works. Thanks!
  2. sisterlynr
    Okay. . . glad I asked. So that is similar to the 'like' on Face Book. . . . that's cool. I have read comments and wanted to like or agree, without writing a reply. Just to note, this site led me to my diagnosis and I recommend it to to so many people. I was desperate for a diagnosis so I could receive treatment. I went online and found questions...
  3. sisterlynr
    The 'reputation' on my profile is marked neutral, who decides this and who puts the post into this category? I also noted it is marked (2) but I only see one post under that category. I reread the post and don't view it as offensive. How do I see the other post if there is indeed two posts that have been reported? I would gladly delete the postings...
  4. sisterlynr
    I love Chinese and Thai food. I ask the waiter/waitress what ingredients they use to prepare the dish. We were at a restaurant Saturday and could not eat there. They used flour in every sauce and breading of meats. There was not one dish gluten free. I was going to settle for white Jasmine rice but rice will raise my sugar levels to the max. I offered...
  5. sisterlynr
    Thanks for that site PricklyPear. I looked at a different chart to compare the 2 drugs. I knew Singulair was a leukotriene inhibitor and found this on the Mayo Clinic site. Since it keeps my asthma under control, I'll just add Benedryl instead of asking for another prescription drug. I suppose if leukotriene inhibitors may help atopic dermatitis itch...
  6. sisterlynr
    Yes to the bumps as that is probably a better description. I don't see them but when I rub lotion or oil into my skin, I feel them. I feel them everywhere although my legs are not as bad. I understand about the dampening of the itch. I take Dapsone but only 50 mg a day. I don't feel it is enough, going to talk to my PCP in a couple of weeks about upping...
  7. sisterlynr
    Thanks for the welcome, Lisa. I have been on the site for bit of time since my research for 'rash' led me here last year. I will look at the site you posted. Isn't it horrible that we have to research to find answers to our symptoms? I take Singulair for allergies. I will go online to see the difference between Zrytec and Singulair. Maybe I...
  8. sisterlynr
    In 2007 I had two lumps around my ears/jaw. The lump right behind my ear was painful and felt like it was oblong. Just next to that lump was another that was about the size of an egg. It did not move around nor was it painful. I was sent to an ENT for examination. There are salivary glands (3) in that area of your face/neck. The salivary glands...
  9. sisterlynr
    I am not an alarmist but I had 2 swollen lymph nodes in my neck in 2007. After testing and biopsy showing positive for NH Lymphoma. I would recommend checking with your doctor. . . .
  10. sisterlynr
    Thanks PricklyPear. I had also stopped taking Benedryl. The past 3 days I have taken it and it does help so I will continue taking it. I think you have seen my photos, I too have the blanket of lesions. The scars have lightened somewhat so the fact yours have faded is hope for me. I don't feel the dimpling is from age or fat. It isn't visible like cellulite...
  11. sisterlynr
    Anyone have information or point me to articles to answer my questions? I had 2 more biopsies in February taken correctly by Dr. F, head of Dermatology at USF. He didn't think I would have a positive for DH due no gluten and on Dapsone since Oct/2012. The biopsy only showed inflammation peri lesion. Since the rash responded to diet and Dapsone within...
  12. sisterlynr
    I was gluten free for 4 months and taking Dapsone. The Dermatologist told me DH would not show up in the biopsies. I talked with him just last week and they did not show DH. He said that inflammation/infection was present and these biopsies were peri lesion with the light. This Derm was tops! He wanted to biopsy since I was there and to see if possibly...
  13. sisterlynr
    Several of your symptoms could be related to your sugar levels. Have you been tested for low blood sugar or Diabetes? I would suggest having your Adrenal glands checked also. Have you been to an Endocrinologist? He/she could check all of the above issues which could be glandular problems. A check for Celiac would be advisable. A family member was...
  14. sisterlynr
    You know the SED indicates inflammation and mine was high like that. Just be sure the dermatologist takes a biopsy peri the lesion for DH. I had 2 dermatologists take biopsies of the lesions and of course, did not have the dx of DH.
  15. sisterlynr
    Glad that you are better! My PCP would have done blood and urine tests stat, I know. I already had anemia, low iron, etc. so she watches me closely. Good news for me is that my April stats are good, with blood and iron back to normal. Yipee! I think the topical would be great and have considered asking if I can switch. . . . let us know how it works...
  16. sisterlynr
    I was diagnosed w/o the biopsy as my symptoms responded to eating gluten free. I think it would be good for the doctors to know the level of damage, as has been mentioned, for her ongoing care. I've had several EGD procedures, some left a sore throat and others didn't. May depend on the doctor. Cool, soft foods is recommended for after care. I...
  17. sisterlynr
    I agree that you should just not talk about it to people that you know don't understand. Just tell them that you feel better, no details needed. Most restaurants have an allergy menu which includes gluten allergy. I just ask the server for their allergy menu and order from it. Good luck!
  18. sisterlynr
    Oh my . . . where did you get the idea that Celiac patients are always skinny? I know several friends, family members and myself that are not skinny but overweight. The weight gain is attributed to the body not absorbing nutrients and going into starvation mode. Your body then stores fat, to protect the vital organs. I've read Celiac can cause diarrhea...
  19. sisterlynr
    I just signed in and saw your question. You should have called your doctor ASAP or gone to the ER. You are describing exactly what my PCP told me could be a severe reaction to Dapsone from the aches, sore throat, weakness to the dark yellow urine. Your kidneys, liver and acute anemia are what they monitor on me, every month. I sure hope that you did...
  20. sisterlynr
    I always ask for a copy of my reports for labs, biopsies or any other medical test. You could call your GI and ask for the report or ask if the villi were damaged per the biopsy. I've had inflammation and was told to follow a bland diet. Bananas, rice, applesauce and toast. I've also been given medication to slow down the processing of food. My labs came...
  21. sisterlynr
    I agree with your family. I was scheduled for a Endoscopy but cancelled as the GI wanted to do it separately from the Colonoscopy. In doing that my co-pay would have been $490.00 (for both) and I don't have the money. My Int Med (my PCP) just talked with me yesterday and suggested I do just the Colonoscopy as 3 of my doctors have agreed I'm Celiac-DH. ...
  22. sisterlynr
    Are you allergic to corn? I love corn chips and ? why they wouldn't be gluten-free. Maybe processed by CC from the factory? I have seen corn chips that listed wheat but also found them w/o wheat. Is there something I should be looking for on ingredients label? I haven't had a blood test one that showed Celiac nor have my biopsies come back with DH...
  23. sisterlynr
    Good news!
  24. sisterlynr
    Check the first discussion that is titled "Descriptions of DH". One reason it was pinned was for reference. Doctors way back in the day have noted the appearances of many skin issues. The book is very old. It is common for Dermatologists to tell patients they need to see a mental health doctor for their DH. I saw several posts on this site and thought...
  25. sisterlynr
    I don't think the pool chlorine affects my skin. I know heat does cause me to itch more, even if I'm not in the sun. If Dapsone helps your rash, it probably is DH. My doctor asked me to start eating gluten-free the day I started Dapsone, in Oct. 2012. I was doing so much better and decided I'd try to wean off of the Dapsone . . . what a mistake!...
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