Jump to content

Hopeful1950

Advanced Members
 View Profile  See their activity

  • Posts

    140

  • Joined

  • Last visited

  • Days Won

    2

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by Hopeful1950

  1. Hopeful1950
    I think "non-celiac" means that all testing is negative and there are no GI symptoms. She did say that they are not sure whether it is due to the fact that DH patients often have patchy (or no) damage in the small intestine and a positive skin biopsy requires hitting the right "target" so biopsy could be negative much of the time. They haven't figured it...
  2. Hopeful1950
    My history: 10 years with blistering insanely itchy rash. 8 years of being told I was "stressed" "neurotic" A little over 2 years strictly gluten free after being evaluated by a really caring allergist who by process of elimination and many years of seeing folks with DH made a diagnosis and agreed to help me try to manage it because I could not bring...
  3. Hopeful1950

    ARCHIVED Dh?

    Hopeful1950 replied to MrsSprinkles's topic in Dermatitis Herpetiformis

    I have a friend who has DH. This is how his rash presented for many years before it spread to his ankles and the back of his neck.
  4. Hopeful1950
    Oh man. I wanted to scream after I read your story. It took me 8 years to get diagnosed and I got blown off and told I 1) was a "picker", 2) I had "stress eczema 3) "neurotic excoriations". "Use this cream and stop scratching".... All along I was seeing a good psych doc who kept telling me that they were full of bull and to keep trying. I found...
  5. Hopeful1950
    I am RH negative and am very sensitive to iodine. It makes my DH go crazy.
  6. Hopeful1950
    This is AMAZING! Is there a way to pin it at the top of the DH forum so newbies can be sent there? I sure wish I had had this wealth of information all in one place when I started my long education about DH and how to deal with it. Thanks for posting it.
  7. Hopeful1950
    Oh man. Your pictures look like me a year ago. I really feel for you. Regarding the stool tests: I did the EnteroLab testing because my blood tests came back negative (as is common with DH). I ordered the package that tests for gluten, casein and also does genetic testing. What I really wanted was the genetic testing because I wanted to find out...
  8. Hopeful1950
    Your pictures look like DH to me. The fact that it is presenting on your elbows (a location that is mentioned quite often in the medical literature) could be a clue as well as the extreme itchiness and your gut symptoms. If it is DH, steroids will only provide relief when you are taking them. It comes back with a vengeance as soon as you stop the medication...
  9. Hopeful1950
    You pictures look almost exactly like my DH as well. Mine started on my shins and my upper back and because I went undiagnosed for so long, it moved up my neck into my hair in the back, my outer arms, my behind cleavage (not sure what this area is really called ) and the tops of my feet sometimes. My understanding of prurigo nodularis is that it is...
  10. Hopeful1950
    I like Multi Vites Gummy Vitamins for Adults by Vita Fusion. No gluten, no milk, no eggs, no peanuts, no soy. I get them from Walgreens. I don't like to take pills so these little gummies are perfect for me. Here's a link: Open Original Shared Link
  11. Hopeful1950
    OMG! Thanks for a great start to my day!
  12. Hopeful1950
    I have one tatoo that I had for many many years before my DH blossomed. One and only one that I loved very much and never regretted getting. Well, when I broke out on my upper back I got a couple of DH spots on the tattoo so I had my husband carefully cover it and I never scratched them even once no matter how bad they itched. It made no difference....
  13. Hopeful1950
    Thanks Prickly. I'll go for one of the "High sal" foods and keep everything else the same in my diet and see what happens. Looking at the lists some things that are gluten-free/iodine free that I love are high in sals so could be.... Think I'll wait until Monday because I'm cantoring at church for Palm Sunday and I don't want to be scratching like...
  14. Hopeful1950
    I've been following this lively thread and am now curious about salicylates. My DH is at a stage where it is not completely healed, but way, way better. I am strictly gluten free and have eliminated iodine. Those of you who know about salicylates...any ideas about something with salicylates that I could eat to do a challenge to see if it has an effect...
  15. Hopeful1950

    ARCHIVED Ceranwrap?

    Hopeful1950 replied to Metoo's topic in Dermatitis Herpetiformis

    I have used those gel burn dressings on my legs. I cut the dressing (a little messy)then covered with waterproof tape. It felt really good. I think you can get smaller ones that are "all-in-one" on a bandaid type thing. I tried the wrap on my legs, but what I did was place wet gauze first, then the saran wrap. A nurse I know said not to put any kind...
  16. Hopeful1950
    Oh man I so feel your pain. With this crap it is normal to be abnormal if that makes any sense... I am coming up on gluten-free about 17 months. I still have itchy scabby places. I still get isolated blisters/itchies here and there. Some thoughts: 1) Yes, sometimes it just goes crazy for no apparent reason. For me these episodes are getting...
  17. Hopeful1950
    Me 5!! When my DH was at it's worst with oozing lesions I never got a secondary infection either. I have always tried to keep hands/nails clean, but as you all know sometimes when the itch was sooooo bad I didn't care about stuff like that.
  18. Hopeful1950
    I'm with Itchy. I would be THRILLED to have scabies instead of DH. If you have scabies it will clear up quickly. I actually requested a RX for scabies medicine about 5 years ago to see if it would get rid of my itchy lesions...no luck That doctor needs a good slap. My DH drives me crazy at night. I once took an Ambien to try to get some sleep...
  19. Hopeful1950

    ARCHIVED Dh?

    Hopeful1950 replied to Tamesis's topic in Dermatitis Herpetiformis

    I have had terrible luck with restaurants. They will assure you that they know what you are talking about, then bring your steak with a piece of bread perched on top. There is one restaurant where I live that is owned by a guy with celiac. He is not overly sensitive to CC, but he always warns new customers that the facility is not dedicated so he cannot...
  20. Hopeful1950
    Thankyou so much for taking the time to share this information.
  21. Hopeful1950
    Itchy, I'm like you. My lesions are 1)new and active: blistery, oozy, very very very itchy, flaring several times a day 2)sort of healed but still raised up intermittently active: scabby, flaky, blistery on the edges, calm some days, crazy itchy others 3)completely healed, flat, mark starting to fade: mark on the skin (white or brown), no itching...
  22. Hopeful1950
    Oh man, I feel your pain! It has taken a year and 1/2 for my husband to truly get it. My husband: Early on he got sick of hearing the same old explanations time and time again. He just wanted to have a normal night out with friends without having to hear about celiac/DH. A few months ago he had to go on a restricted diet due to gastric reflux and...
  23. Hopeful1950
    "That was from chocolate (DARK) I later found but it is connected to Celiac I will explain later" Hi, can you elaborate on the chocolate/celiac connection? Thanks.
  24. Hopeful1950
    After getting the run around from 3 dermatologists, I consulted an allergist because I was sure something I was eating was causing my rash. The allergist helped me figure out it was DH. He did skin testing where they test for common allergens. They look at everything: pollens,molds,animal dander,foods. They asked me to bring in small amounts of things...
  25. Hopeful1950
    My DH has looked just like your rash at times. Tell me, what home testing kit are you using? Is it expensive. How hard is it to use?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.