Wow! Thanks so much for all this information, Squirmingitch! You have done an enormous amount of research! I am very impressed and also, very grateful! I am going to give it all a good read although, I suspect it will take some time to digest. It would seem that my derm definitely screwed up when she took the biopsy directly on the rash. And, seeing as I have been pretty much gluten-free since early December, I am deathly afraid of going back to eating gluten in order to increase the chances of getting accurate test results - assuming, of course, that the derm is even willing to do the tests! This recent flare is creating enough hell for me and, the mere thought of re-experiencing a rash virtually all over my body again - like I had it last fall - makes my blood run cold! As well, I believe Dapsone has sulpha in it and, I am sensitive to sulpha drugs - they make me break out in a dreadful rash and, that's all I need! More rashes! :o/ So, I doubt that I would be able to even consider the Dapsone route, even if I wanted to. I really appreciate all your help, Squirmingitch. You are totally awesome! Thanks. )
Can you believe it?! When I went to the dermatologist in December, she did a biopsy but did the surgery smack dab on a spot where I had the most severe rash! :o/ I wish I had known at that time, that this was not acceptable! Then, she almost planted one of those Elastoplast bandages on the wound! I looked her straight in the eye and told her that the only thing my skin might tolerate is a piece of gauze and paper tape and that if she put that horrible bandage on me, my skin would break out big-time! What on earth was she thinking?!?! Where did some of these so-called dermatologists get their training, for heaven's sakes!!
Yikes! Hearing that I am most likely in for the long haul is not news that I really wanted to hear! But, I must admit that it does help somewhat when I have a clear idea of what to expect - it kind of takes the mystery out of things. Two to ten years seems like a very long time to be suffering but, in a strange sort of way it is comforting to know that there might actually be a light at the end of a very long tunnel. I just wish I had more support from the medical profession! :/ But, this forum has been hugely helpful and, I thank all of you for your honesty and support and also, for your sharing of knowledge, experiences, and wisdom. It really helps take the edge off things and, I don't feel as if I am alone suffering through all this hell.
I am experiencing the same thing - flare-ups for seemingly no reason. Thanks so much to all of you for your comments. They are helpful and, there is also a strange kind of comfort in knowing that I am not alone in this - that other people are going through the same sort of hell. ;o)
I had a horrible, itchy, burning rash over most of my body from early August to early December. A visit to a dermatologist was not at all helpful so, I decided to try a gluten-free diet to see if that might make a difference. Within a week, my rash was virtually gone and remained that way for 6 weeks while I continued with a very strict gluten-free diet. My digestion also improved, I had less joint pain and stiffness, and my nasal congestion improved as well. But, since mid-February, I have been having flare-ups - thankfully, not as bad as before I started on the gluten-free diet but, the rash is still red, raw, itchy, burning, and very uncomfortable - patches on my arms, chest, neck, face, back, and hips. Is this a common occurrence - to have nasty flare-ups like this even when I am on a strict gluten-free diet and even watching my iodine intake? I am starting to feel very discouraged, my nerves are getting a bit frayed, and I am feeling exhausted from having to go through this dreadful burning and itching again (all day and all night). Do I just need to be patient and trust that, over time, things will most likely improve as long as I stay true to this gluten-free diet? Or, am I most likely in for the long haul? I don't even know for sure if the rash is caused by gluten but, boy! It sure improved quickly after I dropped gluten from my diet! And, six whole weeks of being rash-free was total bliss! I even had smooth, soft skin for the first time in a very long time! But, now I am back to this hell and, for the life of me, I don't understand why this rotten, nasty rash has come back to haunt me! Any thoughts, suggestions etc. from any of you fellow sufferers "out there"?! Are flare-ups common? Does it ever get any better?!
Yes! I do! Sometimes I wonder how on earth I can continue to live the rest of my life going through this kind of hell! They can send probes to Mars but they can't figure out how to cure an unbearably itchy, burning, prickling rash! What's THAT all about?! :-/
About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.