Monday, November 19, 2012

mystery diagnosis solved (hopefully)

Okay, so I've got some good news and I've got some bad news. The bad news is that my mysterious skin rash is back (Darnit!) The good news is that I think I finally know what's causing it.

As some of you may know, back in the spring of this year, I had a bit of a freak skin condition that had doctors stumped. It appeared out of nowhere and caused tiny bumps to appear all over my arms and legs that itched more than you can even imagine. After several appointments, multiple doctors' opinions, and endless disproven diagnoses like bacterial infection, viral infection, drug eruption, spider bite, and my personal favorite, "you just have sensitive skin and you're seeing things," I resigned myself to the fact that this mystery would never be solved. I took powerful meds to make the rash go away, and I crossed my fingers that it would never come back, destined to be just an unexplained freak occurrence in my life - one that would hopefully fade into a distant memory. (For those of you who have no idea what I'm talking about, feel free to get caught up to speed by reading the full mystery tale here.)

I never posted a follow-up to my post because, for a long time, everything seemed normal. Then, every so often, I started to see the beginning signs of those familiar bumps appear on both my upper thighs. Luckily, they didn't itch, but I just knew that something wasn't right. I held my breath every time, hoping the bumps wouldn't turn in to a full-fledged rash like the last time, and a few hours later, they'd disappear. This probably happened about ten or twelve times since the original episode in March. The way that the bumps would come and go so randomly is what initially made me start thinking it was a food allergy. Jason and I stick to a fairly standard, healthy diet, but occasionally we indulge and we eat out. Every so often I'd wonder if this skin thing had to do with eating out, but because it wasn't frequent and was very mild, I decided that rather than open up that frustrating can of worms again, I'd just deal with it and pretend I didn't know it was an issue. (Funny how we can convince ourselves something isn't a big deal, even though all our instincts are saying Something is definitely not right here.)

Then, as if right out of my own bad dreams, Thursday night I sat on our couch wearing a long-sleeved sweater and I began to feel an uncomfortable itch creep up on my arms. The familiarity of it paralyzed me for a second as I closed my eyes and got one last wish in, "Please don't let it be what I think it is." I reached my hand into the collar of my sweater and ran my hand from my shoulder to my elbow. Sure enough, hundreds of tiny bumps covered my skin. It was back. This was no longer a freak and isolated incident (although I had probably known that deep down for months.) It was clearly a physical manifestation of an underlying problem, one that I was going to have to figure out. No one could tell me I was crazy anymore, or that this was just a case of "sensitive skin."

After my initial few moments of "Well, crap..." I ran upstairs to show Jason, who pretty much echoed my sentiments with a resounding, "Well, crap!" He asked me what I did recently that could have caused the issue, and I told him my theory about it being tied to a food allergy. "What did you eat recently," he asked. Sure enough, for both breakfast and lunch that day we had eaten out: bagels and pizza (a far and delicious cry from our oatmeal and salad daily menu.)

Then it hit me... the bread. I immediately went into full-on Google detective mode and searched "skin rash + gluten" which led me to a skin condition called Dermititis Herpetiformis, or DH for short. (ps. Did they have to include the "herpe" part in there? FYI despite its name it is in NO WAY related to ANY form of herpes. Just wanted to make sure that's on record.)

So What is DH?

The more I read about DH, the more obvious it became that this very well could be what I have. It's marked by several itchy, pimple-like bumps on the skin. It often first presents itself between the ages of 20-30. The rash is usually bilateral - meaning it occurs on both sides of the body. But what exactly is DH? According to my freakishly smart deputy detective, Google, DH is a hereditary autoimmune gluten intolerance disease linked with celiac disease. Ingesting gluten (from wheat, rye, and barley) triggers an immune system response that deposits a substance, lgA (Immunoglobulin A), under the top layer of skin - hence the rash.

I can't even explain what a relief it was to be reading about something that finally started to sound like my condition, but soon my mind was racing with all sorts of other questions. I had only first heard about celiac disease a year or so before, and I didn't know much about it except it was basically some sort of gluten allergy.

So What is Celiac Disease? 

(Rather than go into the super hard to understand medical definition here, I'm just gonna tell you the general info I gathered from my hours of research the past few days. Remember, I'm not a doctor, so if I use a term incorrectly, please try not to crucify me for it. I'm just trying to communicate the gist here, and I'm tired of reading it in complicated medical jargon terms.)

In my limited knowledge of celiac, I first thought it was just an allergy to gluten. Ya know, you eat it, your body gets irritated or inflamed or what not and so you just have to stay away from it. I imagine this is probably what most people know about it. I was surprised to find that this definition is pretty inaccurate.

Celiac disease is actually an autoimmune disorder. An autoimmune disorder is when your body has a mistaken immune response to something normally present in your body and instead of fighting off bad, foreign stuff in your organs, it begins to attack normal, healthy cells. For fun I like to imagine my immune system as an army of once-harmless robots that have been reprogrammed by an evil genius named Celiac and are now malfunctioning. So... I have an active imagination. It's whatever.

In the case of celiac, the presence of gluten triggers the immune system to start attacking the little finger-like protrusions on the lining of your small intestine, or your villi. (For the record, imagining my small intestine lined with little fingers is REALLY creepy, so I apologize if that weirded any of you out.) These villi are pretty important little suckers though because they absorb the nutrients from your food which in turn nourishes your body. (Anybody else having flashbacks from Ms. Matteson's 7th grade unit on the digestive system? Cue Celine's "It's All Coming Back To Me.") Anyway, that's why celiac can be a serious thing because without diagnosis or treatment it can lead to all sorts of issues due to malnourishment, like osteoporosis, reproductive issues, and liver disease (uh... yeah not to be all gloom and doom here, but that's just a tad bit scary.)

The Other Clues

Now, I'm aware that this could all be a moot point if for some strange reason I don't have DH or celiac and this is all just a coincidence. But I don't think it is, and here's why. There are a few other reasons that now have me feeling pretty confident about my self-diagnosis, aside from the rash that is suspiciously just like DH. Reading up on celiac disease, I started to connect the dots on some other seemingly random health issues I've had since I was a teen:

  • Stomach pain. One of the most common signs of celiac disease is gastro-intestinal problems. When I was a senior in high school, I went to the emergency room for what felt like the most painful stomach cramps I've ever had in my life. The doc told me it was just acute dyspepsia (chronic indigestion) which just suggested to me I had a "weak stomach." From that point on I battled with pretty regular bouts of nausea and stomach pain, but I always just wrote it off as indigestion. I'm realizing now that those issues could very well have been reactions to gluten.
  • Mouth ulcers. (I know, okay, GROSS, but I'm already at about a 60 here, so I might as well go the full 100% disclosure route.) Have you ever had a canker sore? Most people have, maybe from a cut in your mouth or an inadvertently aggressive morning sesh with your toothbrush. They hurt like the dickens though, right? Now imagine a cluster of three or four of those bad boys in your mouth or in the back of your throat and they don't heal for WEEKS. Again, looking back this is one of those things that I should have realized wasn't normal. More days than not out of any given year I've had canker sores in my mouth, often several, but I just got used to dealing with the pain in my everyday life and I didn't' want to make it a big deal. I now know these ulcers are often a primary presentation of celiac disease (and also not contagious, in case you were wondering.)
  • Fatigue. Man, I thought I just REALLY liked sleep. When Jason and I were sticking to our very strict diet (read: little to no gluten) I felt my energy level improve. Similarly, looking back, when I would have things like bread or pizza I always felt tired for days after. I just thought maybe eating bad carbs made my body drag, but I could never shake just how severe that tired feeling was. Even as I write this now, three days after my Thursday gluten binge, I feel like I'm literally in a haze that I can't wake myself up from. I realize now this too could be a symptom of celiac disease. Fatigue is also one of those things that I feel like people think of as "made up" - a symptom that's all in your head. I'm here to tell you it's a real thing, and now I know why. 
  • Muscle cramps. Since I was little, I've always gotten really bad leg cramps. My mom would always make me eat bananas when I got them, for the potassium. Even into my adulthood now I still get them, and I've read that this can occur due to the nutrient deficiencies resulting from celiac. Not quite sure on this one, but it's possible these freak cramps are related as well.  

What Happens If It Is Celiac?

There's no cure for celiac disease. The only treatment is a gluten-free diet for the rest of your life to avoid any further damage. This means no beer, no bread, no pasta, no cake, no crackers, no pizza, and the list goes on. I'll have to completely rethink what I know about my diet and what I put into my body - especially with eating out. Even gluten that is ingested through cross-contamination (ie. gluten-free food prepared in the same area as gluten-containing food) can be harmful. If you're thinking I sound kinda intense right now, you're right. It is intense. More so than I ever thought.

And so there are two conflicting reactions happening within me right now. There's the side that is completely relieved at the possibility that this ordeal might be finally solved. It's the side that is eternally grateful that it's not something more serious or threatening, and the side that is reminded how grateful I am that my symptoms have been relatively mild up until now. This is the side that says "It's just food, Caroline." And it is just food. Living without certain foods isn't the end of the world, especially because for the past few months, without even knowing it, I've pretty much been practicing for a gluten-free lifestyle.

But then there's the other side. The side that sporadically cries at the thought of never having another Chick-fil-A chicken biscuit. (I'm not proud to say that actually happened.) The side that is completely overwhelmed at the thought of changing such a huge part of my lifestyle. The side that hates the thought of being the "high-maintenance" order at a restaurant table with my friends.

I honestly go back and forth between feeling like this is not a big deal at all - a painless adaptation I'll have to make in my life - and feeling like the whole sky is falling. Right now I'm coasting somewhere in between the two. I didn't accomplish much on Friday and Saturday. I pretty much lived in my favorite yoga pants and fluffy socks, digesting every sentence of info I could on celiac and DH. I told myself I could take two days to mourn the loss of gluten, since it had been such a happy part of my life after all (what with the pizza and beer), but the mourning period is now over. I'm ready to confirm that this is what's been causing this issue and learn how to keep it at bay.

So What Now? 

Now, I need to find out for sure. I tried calling my dermatologist on Friday to see if they tested for IgA when I had my original biopsy back in March, but they didn't call me back. Based on all I've learned though, to be absolutely sure of a celiac diagnosis I'll likely need to find a gastroenterologist to do an endoscopy and even a colonoscopy. (YES, I'M THRILLED ABOUT THIS. The ol' 24-year-old routine colonoscopy. Everyone does that, right? Told you I was going with 100% disclosure here.) Apparently that's the only real way to be sure, plus given the likelihood and my symptoms, I would want to see how much damage to my small intestine has already occurred. Beginning Monday I'll be looking for a gastro that has experience with celiac disease, so if you know anyone in the Jacksonville area, please PLEASE let me know in the comments or email me.

I'd also like to mention and thank my friend Lainey, who sent me a link to DH way back in March when all this was going on. At the time, so many people were giving me advice on what it could be based on experiences they had (everything from allergies to scabies to hives - don't get me wrong though, I so appreciated all the help!) so at the time I didn't investigate it as much as I should have (plus I thought it was an isolated case and so I didn't have all the clues I have now.) I wish I would have at least asked about it back then, but I'm thankful she reached out because that's what made me first aware of celiac disease. I also want to thank my friend Erica who has her own celiac blog, Celiac and the Beast, for taking the time to chat with me on the phone about her experience - she reviews gluten-free products on her blog too so I have a feeling I'll be visiting a lot more!

Anyway, thanks to everyone for the support, back in spring and now. I'll keep you guys updated throughout the process in case anyone out there is encountering something similar. If my diagnosis is confirmed, I don't plan on introducing any sort of celiac theme to my blog, but I do think that sharing my experience with you guys is important since I feel I have already benefited so much from the experience of others.

Thanks for reading, and more importantly, thanks for caring. Let's do this gluten-free thang, y'all. I'm ready!


  1. First, thanks for the shout-out. Although getting a diagnosis for a life-long autoimmune disease may sound scary, I'd be happy to welcome you into the "family" with open arms! I'm never happy that someone has to suffer, but heck - we could use more beautiful bloggers on the side of good, fighting against wheat (as it often fights back against us). I am ALWAYS here for you, as for any celiac or gluten-sensitive. And although I'm not a doctor either, I did go through 4 years of testing for everything under the sun. As I sit here with a giant mouth ulcer (stupid cross contamination), I'm going to tell anyone that Celiac is damn hard to live with. But, dedication and an upbeat personality (two things which you already have in full supply) will get you through it. And all this wavering back and forth between getting diagnosed and being sad about all the foods you can't eat is 100% COMPLETELY normal and justified for someone who is recently faced with a diagnosis (or an inkling of one). There's a definite grieving process - mourning the loss of all the foods you can't eat, being able to walk into a restaurant and ordering whatever you want, traveling without packing food - but then you get over it eventually, and never look back. You are strong, and you can do this. And hopefully you won't ever regret an itch-free day of your life after ;) (PPS did you know that clumsy may be related to gluten-intake too, google "gluten ataxia" if you don't believe me - I run into walls all damn day!) I'm hoping you finally solve your medical mystery, and it's a diagnosis to celebrate! - Erica (aka Celiac and the Beast)

  2. Wow - that's crazy. Please keep us posted through your blog on what this ends up being. Best of luck to you and I hope you get to feeling better really soon! :-)

  3. You give me the lols. Thanks for all the advice and the support - your outlook on celiac is exactly how I hope to look at it if that is in fact what's been causing my problems. I'm gonna kick gluten's butt!! And can't wait to read all your product reviews for delicious gluten-free noms!

  4. Caroline, Please contact me! I will look forward to hearing from you. Love you!