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sisterlynr

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Everything posted by sisterlynr

  1. sisterlynr
    Welcome. You have found a great site. I too have suffered for too long w/o a diagnosis. I had an aunt that died at the age of 38 with Celiac colon cancer, never diagnosed or thought of until her daughter was diagnosed with Celiac. In addition 3 of my aunt's siblings died from colon cancer the oldest being 64. None of them had the skin rash. My cousin...
  2. sisterlynr
    Oops . . . just meant to update. Good luck and it sounds like you have great doctor. BTW, my first biopsies showed 3 different "dx" of Grover's Disease of skin (every doctor has asked me, "What is that?" LOL Eczema, Folliculitis, due to taking biopsy of the lesion. I vowed never to eat gluten again . . . not even for a test. Proof is in the pudding...
  3. sisterlynr
    Mamat78: Welcome to this site. It has been so helpful to me! Did your doctor ask you to start a gluten free diet in addition to prescribing Dapsone? A few years back if you were given Dapsone with a gluten-free diet and your rash cleared, the doctors did not feel a EGD w/biopsy was necessary. That was proof enough that a patient had Celiac- DH. ...
  4. sisterlynr
    I'd say if you don't have the itch, sting and burning (like being in a nettle patch) the rash isn't DH. It also presents on both sides of the body. It's weird but true. You may want to consider the breakout at the tailbone area could be Shingles. My doctor told me that if the nerves in that area are inflamed, Shingles can pop out. I usually had Shingles...
  5. sisterlynr
    Aveeno contains Oats . . . I couldn't use that product. I read ingredients not only on food to be safe.
  6. sisterlynr
    Ravenwoodglass has a very valid point. That is why I mentioned the combination drug as Metformin/Glucophage can cause gut issues. The JentaDueta solves that problem. Celiac can cause Diabetes Type II, along with many other autoimmune disorders. I've been hit with way too many. Besides Diabetes, I'm diagnosed with Osteoarthritis, Premature Ovarian...
  7. sisterlynr
    Glucophage/Metformin: You can call the manufacturer and ask if their product is gluten-free. Since there is a generic, I would call the specific company. If you have gut problems with Metformin, there is a medication that is Jentadueta which is linagliptin and metformin combined. I've been taking it with no ill side problems. My problem was gut upset...
  8. sisterlynr
    I had to beg my PCP to let me try Dapsone. It can affect your blood, kidneys and liver. When she saw the results and my blood levels were okay. . . she told me she only had 1 other patient on Dapsone. I understand the scalp being so sore. I never have break outs on my face, never really did even in my youth. I have a lesion on each jawline, both temples...
  9. sisterlynr
    I buy gluten-free bread crumbs. Check the gluten-free section of your grocery. I don't know if this would help you. . . an Asian restaurant near me used corn starch which creates a nice crispy texture on their dishes with chicken. Light and without all the dough, you can taste the chicken!
  10. sisterlynr
    Your doctor should check your blood to see if you can tolerate Dapsone. He/She would order a CMP and CBC first. When my doctor ordered Dapsone it was on the condition that I would start the gluten-free diet and see her on Monday. I started both on a Friday and felt a difference within 72 hours. I was eating gluten-free but by accident ate foods...
  11. sisterlynr
    Chefwife8 In all reality . . . I'm not sure it matters to have a definite diagnosis of DH. It is just marked on your medical charts and who is that helping? I guess it does matter to be sure it isn't another skin disease. I think the doctor and/or test being positive about DH is for peace of mind. It sure doesn't help the itch, sting or burn....
  12. sisterlynr
    Hmmm, I have been using Head and Shoulders every other shampoo. My scalp burns so much as some of the lesions are open due to scratching. I know . . . that's bad. I stopped using hairspray years ago due the irritation to my scalp. I sometimes spray my finger tips and spot touch my hair if it's windy outside. Seems my hair has stopped falling...
  13. sisterlynr
    Oh my . . . Carybear, you do not have DH? I would like to know how you diagnosed by the picture too. Just curious. I have been diagnosed with DH with 2 doctors in agreement and the rash on my hands looked exactly like 'Dani' presentation. The blisters on my hands were extremely small, fluid came out after scratching and they eventually had the peeling...
  14. sisterlynr
    Much more prevalent than facilities want people to know. Just the stigma of being unclean but that is not the case. My doctor asked me about bed bugs and scabies. I actually agreed to the medication for scabies. I was desperate for a cure! No one in my house had bites or blister/lesions like me, I knew it couldn't be either cause those bugs are not...
  15. sisterlynr
    If the pool water is cool I don't seem to have a problem with being in the sun. I have had horrible break outs on my scalp after a day at the beach and not being in the water. Maybe it is the heat . . . I have to agree with Squirmy, sun or the heat ? ? ? I was majorly broken out this past summer and had to keep the car and house cool or the itch was...
  16. sisterlynr
    Thanks janpell for the info. I will check into those items. I don't know what I'm doing differently but I'm not seeing as much hair coming out, in the past week. Whew! Hope it fills out soon. My hair is just below my shoulders now and I can make one pin curl held with a small bobby pin. Really thin!
  17. sisterlynr
    Not had a problem with Macaroni Grill. I think it depends on how educated the servers are to their allergy menu.
  18. sisterlynr
    Scalpicin will take the itch away, immediately.
  19. sisterlynr
    My Dad had gout from the age of 36 and several of his siblings suffered from it too. Dad's blood counts did not indicate they were high enough for him to have gout. You can't always depend on the blood test. Just a thought for you. . . I sure hope it isn't gout, it's a nasty disease! He did have gout and proven through aspiration of fluid from his...
  20. sisterlynr
    Well, I have joined the many that have been told to see a psychiatrist because of my rash. I just about fell off the exam table as I listened to a new dermatologist tell me that my rash was caused by my mind. He told me that I felt an itch, scratched it and it became a blister of fluid. Then when the skin was broken, it became infected. He also told me...
  21. sisterlynr
    I have used Scalpicin, a product for scalp itch. It does work! I have applied olive oil to my scalp and left it a couple of days. It is hard not to scratch and I have a horrible time trying not to pick at the scabs.
  22. sisterlynr
    I saw a new Dermatologist today. This is the 5th one that has looked at my skin to determine what the rash is or is not. He asked if I had blisters (yes) and said he really wished he had seen a blister. I had pictures and described how I used a sterile needle to release the fluid from blisters. That seem to satisfy him that I had blisters even though...
  23. sisterlynr
    I read the online copy that is pinned regarding types of DH. It was obvious that DH has been around for many years and doctors did not know the cause. I have had all of the various types of lesion presentations that were mentioned in this book. I had to chuckle when reading the article when he stated it was a mental and nervous issue. If the book...
  24. sisterlynr
    Not me. . . sorry can't help you. That would be horrible!
  25. sisterlynr
    Squirmy . . . I can tell they are healing. Pray it continues to heal and quickly! I understand about the allergy to penicillin and needing a fall back drug, for an emergency. My Gpa, Dad, siblings and now my nephew is allergic to penicillin. My Gpa was given it, in error while admitted to hospital for pneumonia and died in 1963. Hang in there...
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