A Rare Bird

 

Rarebird

I’m chuckling as I write this today. It’s been a long couple of months as I’ve been learning about celiac disease and how to live gluten-free. First of all, I’m feeling much better on a strict, 100% gluten free diet. All but one of my ailments  have gone into remission.

The last thing hanging on is a skin condition, which I didn’t know for sure was related to celiac disease. Until today. It’s called dermatitis herpetiformis (DH). Sexy, huh? 😉

“So strange,” said my doctor, “It’s such a rare manifestation of celiac disease.”

“No, not strange. I’m usually the awkward one of the bunch in almost any situation.” 🙂

Rewind for a moment to this summer: [Pardon if the following is a bit TMI, but it’s part of my story, and I assure you it’s interestingly entertaining]. A couple of my illnesses diagnosed earlier this year have since turned out to be other symptoms of celiac disease. One was called interstitial cystitis (IC)– simply put, sensitive bladder. I essentially felt like I was experiencing chronic bladder infections, for two years.

During a scoping procedure (to make sure I didn’t have anything serious like cancer growing inside my body), the urologist brought my innards up on a video screen. She explained to me everything we were looking at and then grew silent. Obviously the silence prompted me to ask, “Everything else okay?”

“Oh yes. Everything looks great. You have a beautiful bladder!”

Well, now aren’t you just the sweetest thing! There’s a compliment I never expected to hear.

I recently learned that “bladder sensitivity” is also a rare symptom of celiac disease. A symptom that has now disappeared on my gluten free diet.

Back to today’s diagnosis of dermititis herpetiformis– my doctor revealed another little factoid, “Seems those who have celiac disease with the DH manifestation have a lower mortality rate than the general population who have celiac disease.”

I’m sorry. Come again? What does that mean?

The doctor laughed, “I guess your skin condition protects you somehow! So interesting isn’t it?”

Hm. Seems I’m a rare bird.

“By the way, usually DH doesn’t respond to topical treatments, but it looks like your skin is healing after only a week of being on it. I think we’ll hold off on the dapsone therapy and see how your body does.”

What is dapsone, you ask? I did. Turns out it’s a drug used for years and years to treat leprosy.

The whole situation makes me chuckle at my awkwardness. It’s something I am use to, and I embrace it. But I can’t help but love my mom’s perspective: “Your body just likes to be unique.”

4 thoughts on “A Rare Bird

  1. Vinae

    Ah, Leanne, I am laughing along with you because my body is also likes to exhibit the unusual characteristics of ailments. I, too, have/had some of the more rare symptoms of Crohn’s disease. Only when I went to a really insightful dermatologist who looked at all my visible symptoms did anyone ever suggest that I might have Crohn’s. Isn’t it nice to know that your problems have a name and hopefully a solution? 🙂 (btw, I take a drug that is used to treat leukemia – weird, huh?)

    Your friends have always known you are beautiful…inside and out.

    Reply
    1. Leanne

      I didn’t know you have Crohn’s disease, Vinae. Yes, it is so nice to have many of my questions answered and a plan of action to feel better. 🙂

      Thanks so much for your comment!

      Reply
  2. Lyn

    Oh Leanne, I do love the picture of the bird at the top of your post. Is it a Liberace bird 😀
    Your ability to remain positive through all of this is an inspiration. I do pray that you’ll soon have all the side issues under control. You certainly don’t believe in doing things by half do you?

    Reply
    1. Leanne

      Haha! No, God won’t let me do things half way. Believe me, I’ve tried. 😉

      Thanks for the name of the bird! I was wondering what it was called. Thanks for your kind comment, Lyn!

      Reply

Your turn! What would you like to say?