Tuesday, July 7, 2015

I Thought Celiac Disease Was a Joke. I'm an Asshole.


I will begin by admitting I'm an ass. I usually eyeroll the whole "I can't eat gluten" nonsense. I am aware some people have the actual disease and can't for stomach reasons but the sheer amount of people that claimed they have this disease bewilders me. Even the New York Times wrote about it here.

 When Amelie had horrible eczema over the winter and people suggested I cut out dairy I laughed hysterically. Call me selfish and ignorant but that's just how I felt. The joke is really on me b/c my friends that have cut out gluten or dairy look WAY better in a bikini than me. I just love food and hate vegetables so I'm pretty narrow minded when it comes to restrictions in diets. Call me a toddler.

Well a few weeks ago Max developed these red bumps all over. We assumed it was Chiggers (did you know nail polish is NOT the remedy?) and covered him in Calamine lotion. 
By Saturday morning it got so bad that he had to go to the urgent care. I got a call from him while I was at the pool with the kids letting me know he had been diagnosed with either SCABIES or SHINGLES. Ummmm Scabies? What? They said he probably got it from the gym and that we had to coat all the kids in this $80 prescription lotion and wash our entire house. Scabies is just like bedbugs...it is a tiny mite that burrows. 

Well 14 loads of laundry and one pissed off mama we were on our way to getting healthy. I made him go to the dermatologist on Monday just to make sure.

Wellllllllllllllll....

The dermatologist laughed his ass off and said that NO, it wasn't Scabies. It was an allergic reaction to something, probably detergent. They took two huge biopsies and sent Max home with the miracle drug prednisone and said to not eat gluten for a week just in case. 

Father's day dinner Max indulged and rewarded himself with a hefty dose of pasta....and three days later this......

The next biopsy showed that Max has Celiac Disease presenting as Dermatitis Herpetiformis . Here is just a snippet of what he is feeling: Intense itching. A burning sensation. Clusters of small blisters that persistently break out on the elbows, knees, buttocks, back, or scalp. These symptoms are the hallmarks of dermatitis herpetiformis (DH), a skin manifestation of celiac disease. DH affects 15 to 25 percent of people with celiac disease, and these people typically have no digestive symptoms of the disease.

Max is a foodie. His father was an Executive Chef and Max learned everything there is to know about cooking from him. He also loves Bourbon...(see Bar)

To say that this diagnosis has wrecked his world is an understatement. I know that sounds overly dramatic to anyone out there battling something more severe, and I apologize, but this is a big adjustment for us.

They now have him on a leprosy medication that makes him feel terrible and the rash still hasn't subsided so he is slowly getting back out in the sun. I have bought a few Gluten free cookbooks from friends and already placed an order for gluten free soy sauce. We are slowly learning!

If anyone has any tips they are gladly appreciated. He also turns the big 40 this Fall and our trip on the Kentucky Bourbon Trail is probably out at this point. Caribbean? Palmetto Bluff? Skiing? 

xo,
Nurse K
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