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jmb002

Member Since 09 Sep 2012
Offline Last Active Feb 06 2014 10:17 AM
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Posts I've Made

In Topic: Look At My Pics Please

01 October 2012 - 05:17 PM

I had four biopsies done by a doctor that didn't really know where to do the biopsies. I ended up being diagnosed with scabies, atopic dermatitis, and medication allergies. I finally started researching myself and figured out it was DH. I went to a new dermatologist and told him that I thought it was DH, so he started me on a trial of dapsone. In the two weeks I have been on the dapsone the itch and rash are almost completely gone......the itch was almost non-existent in two days or so. I actually went back today and he told me he isn't even going to do a biopsy. He said he feels like the dramatic response to dapsone was diagnostic itself and I had DH. You might look at the thread I started called "Does this look like DH to you?" Squirmingitch posted some links to websites that I printed and took with me to the doctor's office. The links tell exactly where the biopsy should be done as well as gives other information about DH which I found very interesting and informative.
Hope that helps!
Jenn

In Topic: Look At My Pics Please

01 October 2012 - 01:50 PM

I was just diagnosed with DH and mine looked almost identical to yours. I had what looked like hives all over the place. I didn't have any blisters whatsoever. I went to 2 dermatologists and my GP several times before I finally got the diagnosis, but I started on dapsone two weeks ago and my rash is almost completely gone. The dapsone has given me relief where nothing else did and now I am almost completely gluten free for a week. Hope you have better luck getting diagnosed than I did :(! Good luck! Hope you feel better soon!
Jenn

In Topic: Do You Get A Flu Shot?

26 September 2012 - 07:39 AM

I can't speak for the gluten part of the flu vaccine because I am just starting to wade through all of this (was just diagnosed as having DH last week :blink:); however, if you are allergic to eggs (you said you were when you were a baby) then you should NOT have the flu shot. I am in nursing school and that is one of the big things they tell us, but it doesn't seem to pertain to other vaccinations. I will do some research if you would like, but I wouldn't get the flu vaccine if you are allergic to eggs. You should probably verify that with your physician to see if he thinks you can, but if it were me I wouldn't.

Hope that helps :).
Jenn

In Topic: Curious About What Vitamins Are You Deficient?

19 September 2012 - 09:22 AM

At last check one of my office visits at the beginning of the year my Vitamin D level was 3, with normal being 30 and 12 being severely deficient....YIKES! I haven't had any other huge deficiencies that I know of and was just diagnosed with dermatitis herpetiformis (the skin manifestation of celiac) a couple of days ago.

In Topic: Does This Look Like Dh To You?

19 September 2012 - 09:11 AM

The plan was to do a celiac panel in a couple of weeks. I am not sure why he didn't do a biopsy, but my suspicion is that he didn't have time. I was schedule to see the PA whom emphatically claimed it was hives and I just needed to go back on the steroids and suck it up. I was pretty upset about it and was ready to walk out. I told her I wanted the doctor to look at it and she grabbed him out of another room to come have a look. He took one look at biopsy results from other doctor and my skin and said it was DH. At this point I feel good about the diagnosis as that is what I believed it was all along, but thought if I could have the blood work confirmation as well it would be nice. I guess if I go in a couple of weeks for blood work and it comes back negative I will just go gluten free anyway. I definitely believe that it is DH. I have been on dapsone for 2 days now and am seeing slight improvements in the rash and my overall itchiness has really gone down. He said I should see marked improvement in 4 days and if not call him, so we will see.

This illness is EXTREMELY frustrating! I completely understand why people self diagnose and do what they have to to make themselves feel better! At one point during my conversation with the PA I was in tears and had to apologize later for being such a (insert nasty word).

Thanks for the advice and all of the information! I took all the information I printed from this website to my doctor's appointment. The doctor said my case was "different" looking so had several PA's come in and look at it. Maybe that will help some other poor sucker who is itching and scratching themselves to death!