Celiac Disease: It’s All In the Family
There is no doubt that it is around the family and the home that all the greatest virtues, the most dominating virtues of humans, are created, strengthened and maintained.
– Winston Churchill
I am doubly blessed when it comes to family life. I was raised in a pretty cool family with three older brothers and parents who held their act together just long enough to raise four respectable adults. And now I am the husband of a woman who I love more than life itself and I get to raise two daughters of my own who I have watched in amazement as they have become young adults.
Yes. After growing up in a male-dominant household, I’m now surrounded by women and I wouldn’t have it any other way. If you read my blog (bless your heart), you know them as Mrs. Dude and the Dudettes.
This is our celiac story.
In April of 2007, I was diagnosed with bladder cancer.
The Dudettes were 11 and 8. While it was a major health scare and a huge “holy crap” moment in my life, thankfully it was not life-threatening. Mrs. Dude and I decided not to tell the kids that I had cancer because that word has such connotations attached to it. Whenever I came back from a procedure, we would just tell them that Daddy has a few health issues and the doctors are making sure he’s all better. The word “cancer” never entered our vocabulary with them. I suppose they’ll find out when they read this article.
Just kidding. We told them a few years later.
When I was diagnosed with celiac disease six months later (yeah, good times …let’s not even get started on my pulmonary embolisms in 2008), Mrs. Dude and I were at a loss. We had never heard of the disease or the word “gluten.” You see, when you get diagnosed with celiac disease, the only instructions you receive from the doctor are, “Don’t eat gluten ever again.” And I’m thinking, “Ummm, okay. No problem. By the way, what the heck is gluten?”
It was a new world we were entering, and one that seemed absolutely overwhelming. Not only did we need to learn what I could no longer eat, but we had to make sure I was safe in my own house. So Mrs. Dude did what she does best. She took complete control of the situation and kicked total booty. She immersed herself in learning everything she needed to know about this new constant in our life. Before you know it, I had my own counter in our kitchen, my own toaster, my own blue sponge to wash my dishes, my own set of pots and pans, my own cabinet for my food, my own silverware drawer, and my own shelf in the fridge. If I was going to get glutened in my own house, it would not be due to carelessness.
Enter the Dudettes. How did we get two pre-teens to understand the seriousness of Daddy’s new illness? Upon my diagnosis, we sat them down to explain celiac disease and tell them how I couldn’t eat gluten anymore.
We told them how important this was and that even a crumb could make me sick. Then we walked them around the kitchen and showed them all the new gluten-free labels placed throughout, indicating that those areas were off-limits to them. We explained all the new rules. For example, they couldn’t put their hands directly in the ice bin anymore unless they had washed them first. They couldn’t use my peanut butter for their sandwiches. They couldn’t drink Daddy’s beer. (Just seeing if you’re still paying attention.)
And you know what? They got it. They never blinked. And before long, it became the new normal. The transition was made easier because our family came together for a single cause of keeping me healthy. I know how lucky I am, as I have received so many disturbing emails from fellow celiacs whose families don’t take the disease seriously. From the father who doesn’t believe in celiac disease so he feeds his daughter gluten, to the family of doctors who dismiss their sister’s celiac disease because it’s just a fad disease. Honestly, you can’t make this stuff up.
The family support is so huge. I just don’t know where I’d be without it.
So what is it like from the Dudettes’ perspective? That’s a darn good question. I asked both of my kids to write a little something for this article, describing what it’s been like having a father with celiac disease. Here’s what they said.
Dudette #1: I was in middle school when I found out my dad had celiac disease. I remember going into school the next day and telling my friends my dad was allergic to glucose. [Dude note: Gotta love it!] At first it was a challenge. I had to adapt to all these new kitchen rules like “don’t touch the top shelf of the fridge, that’s dad’s shelf,” or, “wash your hands before you go on his computer.” The hardest part of having a father with celiac is when he gets sick and all of these thoughts take over my mind worrying if I was the one who got him “glutened” this time. It’s hard watching someone you love constantly feeling sick and run down so often, but my dad is the strongest man I know and doesn’t let celiac take over his life.
Dudette #2: I would be lying if I said having my dad be diagnosed with celiac didn’t change my lifestyle, but I would also be lying if I said all of those changes were negative. I’ll be honest, it was difficult at first. It definitely affected the entire family. But despite the hard encounters my dad has been forced to face, things have gotten better. Not in the sense that he feels amazing 24/7, or even most of the time, just in the way that my family and I have become more aware overall. I think the hardest part of living with someone who has celiac is just seeing them struggle daily. My dad being diagnosed with celiac definitely changed some aspects of my home life. Yet he is still the same amazing person he was six years ago, despite all the horrors he went through. Celiac may have changed my family, but it didn’t affect my love and appreciation for the man who has to live with it.
And now let’s hear from the woman who keeps this household running like a fine-tuned engine. What impact has celiac disease had on her life?
Mrs. Dude: The day my husband’s diagnosis came in was the end of life as we knew it. I knew going forward, everything would change. And it did.
I will be honest, I mourned along with him. He mourned the loss of NY bagels, real pizza, and a good IPA. I mourned the loss of our spontaneous way of living. No more just grabbing a drink and something to eat at that cute new place. Now it takes a ton more work, planning, and research to be that cute, spontaneous couple.
I had so many thoughts zoom through my head at once. How would we eat out? Socialize? Travel? How in the world could we keep him safe? The world was full of gluten at every turn. And cross contamination??? Are you kidding me??!! Grrrr!! I was overwhelmed!
It has been quite the journey. Not as simple as we were told. “Avoid gluten and you will feel better.” Unfortunately, this stubborn little autoimmune condition has a mind of its own. It angers me. It saddens me. This disease has robbed me of my best friend A LOT of the time. I never thought this would be my competition. My fun-loving, vivacious, intelligent husband turns into a cranky, severely exhausted, brain-fogged twit that also suffers physically (I will spare those unpleasant details). Did I mention cranky?
To sum things up, this is a crappy, unappreciated disease that has challenged me. I will fight it to the end. No one messes with my Dude and gets away with it!
Like I said, I’m blessed with an amazing family!
I hope you are, too.
Written by The Gluten Dude