I know it’s been ages since I updated the blog, but now I’ve got something to write about.
Ever heard of Dermatitis Herpetiformis? No? Well, me neither. Until yesterday, that is.
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.
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 Tuesday of last week. 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.
This brings us to yesterday. I am sitting at work study, stuffing envelopes and chatting away (what fun!) when my phone rings. I go out in the hall and am told something along the lines of this:
“Joy, you have Dermatitis Herpetiformis. You need to start taking medication go on a gluten-free diet immediately.”
I wondered if the women on the phone knew that she had just changed my entire life.
So I had three things to look up.
1) Dermatitis Herpetiformis (click for Wikipedia article)
Basically, in the simplest terms I can think of, I have a gluten build up in my skin. My body doesn’t know what to do with the gluten it can’t break down, so it stores it in my skin. The breakouts are caused by a combination of the gluten, my skin, and iodine. 11.2 people out of 100,000 have this disease.
2) Dapsone (click for Wikipedia article)
This medicine is used for treatment of DH and combined with two other drugs is a treatment for leprosy. Say what? Basically, I am taking this to get rid of the gluten build up in my skin. According to various medical websites, it can take up to two years for the gluten build up to go away. This medication works amazingly, but because of side effects it is recommended that you only stay on it as long as necessary. While on Dapsone, I have to get blood work done once a month to make sure it isn’t messing me up anywhere else.
3)Gluten free diet (click for Wikipedia article)
Unlike Dapsone, this is life-long. To keep my skin from breaking out and to keep from developing Coeliac Disease (along with a long list of other diseases I’m at risk for), it is mandatory. This sound horrible, and it is at first. I adore bread. I love bread. I would marry it if it were only a person. However, I can no longer eat my beloved sourdough or pumpernickel-rye. Thankfully, there are other people at school with this same strict diet. My RA, for one. She has been an amazing help, and I haven’t even known about it for 24 hours yet. I guess the one plus is that I no longer eat Aramark food.
I’m not going to lie, it sucks. I went grocery shopping last night and had to hold back tears the entire time. Cap’n Crunch peanut butter? Gone. Doritos? No more. Pepsi? Not allowed. Zaxby’s? Sorry, no. And the list goes on. And on. And on.
But if I focus on what I can’t have, I’ll just be depressed. I have to focus on what I can have. Like Chinese food, because they use corn flour on their breaded meats. A Taste of Thai brand foods. Rice cakes (yeah, I actually like these). Sprite. Trix (the only cereal that is gluten free). Potatoes. Rice. Plus there are substitution foods. Breads, crackers, cake, brownies, pancakes, etc. all gluten free.
I can’ promise that I will update frequently (just look at my past posts), but I am going to use this blog as a record of my journey. As my dad said, I am Joy who happens to have DH, not a person with DH named Joy. Hopefully this will be helpful to someone one day, just as my RA has helped me. Please pray for me as I adjust to this new lifestyle.