JoyfulM's Blog

For the past three years, I've been having weird breakouts on my elbows. Some medical professionals told me that it was most likely a skin reaction, and not to worry about it unless it spread. This August I noticed it on my knees as well. This started my doctor chain. I first visited my family doctor, who sent me to an allergist. I went in for a scratch test, but nothing reacted like my breakouts (I did find out that I am mildly allergic to grass and dog dander, but can still have a dog). After another breakout, my allergist sent me to a dermatologist.

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At this point, I was just annoyed with everything. My breakouts didn't itch, and half the time I didn't even know they were there. I just wanted to find out what was wrong and move on. My first appointment with the dermatologist was on a Tuesday. We discussed some possible causes, such as arthritis or an allergy to pain medication. I broke out again on Thursday night, and went back to the dermatologist on Friday. She was able to biopsy my knee and drew blood.

When I was diagnosed, I was told over the phone by the office secretary. I was told that I have DH, I need to go on a gluten free diet, to start taking Dapsone immediately, and to come in in two weeks for blood work. No explanation of what gluten is, no help with the diet, etc. Luckily I have a friend who is gluten-free who has been a big help. I called the doctor's office yesterday to see when I needed to come in Wednesday (all I was told was "sometime in the afternoon") so I could speak with her, and they acted surprised that I want to talk to the doctor. Did they just expect me to come in for blood work and leave?

Here's a list of questions I have for my doctor so far:

• Did you check the ingrediants of my other medication to make sure they are gluten-free?
  
• If my breakouts don't itch, should I still be on Dapsone? From my understanding, it is used to control the itching.
  
• How can I tell if I have eaten gluten, since my skin has only reacted to large ammounts in the past from what we can tell? (i.e. Zaxby's meal, Chinese noodles, etc.)
  

I also want to ask her if how I was told is normal. I can't imagine how I would have reacted if I had not already known someone who was gluten-free. While I am there I am also going to request and sign forms stating that my parents and my aunt, who is a doctor, can speak with my dermatologist. Does anyone have any other suggested questions?