Dermatitis Herpetiformis Leaves Me A Little Rough Around The Edges

pineapple
This pineapple may be a little rough around the edges, but it’s also totally cute! In fact, it was the best find of my grocery shopping trip this week. Since then, every time I get dressed and feel the roughness on the back of my elbows I like to think of this pineapple. Why? Well, I have dermatitis herpetiformis (DH) – a skin manifestation of celiac disease, which sometimes leaves me rough around the edges. Thinking of this adorable pineapple reminds me that this annoying and ugly rash doesn’t prevent me from being the highlight of a meeting, the life of the party, a creative soul, a compassionate person, a smart cookie, or even a cutie pie.

elbow

DH on my elbow today.


I’m not saying I love having DH, but I am grateful that my long-term gluten-free lifestyle means that when it appears now it barely itches. In fact, now I often don’t notice the rash on my elbows until I run my hand across it when applying lotion. This wasn’t even close to true in the days when I consumed gluten. At that point, my rash was so unbearably itchy it required intense concentration at all times to keep from clawing at it. Sometimes I still couldn’t resist. It was driving me crazy!

I mean, it was seriously distracting. I had inflammation, pain, weakness, severe gastrointestinal symptoms, and my hair was falling out, yet the thing that drove me to the doctor was that itch. If you’ve had it, you understand why. If you haven’t there’s no way to express how pervasive it is. In spite of the fact that my case was a classic presentation, my doctor never considered celiac disease as a possible diagnosis. He prescribed an antihistamine and sent me on my way.

It was a long road from that point to one where I began healing. Looking back, I’d say the symptoms had been gradually increasing for at least 10 years. I know that the length of time it takes in the US to get a celiac diagnosis has dropped from 11 years to 4 years, but 4 years is a very long time to spend with a sixfold greater likelihood of death. Four years is a long time to deal with unnecessary daily pain, weakness, malaise, diarrhea, or the itchiest rash in the universe!

It’s become quite popular to debunk the benefits of a gluten-free diet for anyone other than the diagnosed celiac. While that might seem prudent if more than 17% of the 3,000,000 estimated celiacs in the US had been diagnosed, it is a bit presumptive at this point in history and it discourages people from trusting what their body is telling them. While I know that some of the self proclaimed gluten-free community is ill informed (as Jimmy Fallon discovered: https://www.youtube.com/watch?v=AdJFE1sp4Fw), perpetually whiny, or over promotes itself, it’s worth pausing a moment before discouraging or challenging someone’s dietary choices. It could be that they feel on the inside like I felt on the outside when this rash, triggered by the iodine in radioactive dye used for a CT scan, covered 2/3 of my body.
DHSM

As you can see, I was more than a little rough around the edges. If someone is feeling like that on the inside, I just want them to feel better, don’t you?

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Resources
http://www.celiac.com/articles/22028/1/Increased-Mortality-Rates-for-Celiacs/Page1.html

http://www.cureceliacdisease.org/wp-content/uploads/2014/06/CeliacDiseaseFactsAndFigures0614.pdf

http://sciencelife.uchospitals.edu/2014/02/05/dr-faq-stefano-guandalini-on-the-rise-of-celiac-disease/

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