OK…we’ve covered lots of great topics this month.
Good gracious…we’ve even done a Celiac Haiku.
So what topic haven’t we covered yet?
I’ll give you a hint. Oh, hell, no I won’t.
I’ve always said this blog is not about me; it’s about US. But besides that small blurb to the right beside my mugshot, I’ve never really told my story before.
So for the three of you who might care, this post is for you.
A quick setup: I was honored to be the Feature of the Month on the blog I am J the Blog. J is a phenomenal, passionate gluten-free blogger who is an awesome voice in our community. If you haven’t been to her site, you should seriously check it out.
She did a full interview with me for the Feature, which can be found here. Below is the somewhat abridged version.
Self-promotion is so ugly, isn’t it?
Tell me about your experiences before being diagnosed with Celiac Disease. How did you deal with your symptoms?
First of all, thanks for the kind words above. I appreciate the sentiments and the opportunity to be your Feature of the Month. I’m touched and honored.
When it comes to symptoms, I was one of the lucky ones. My symptoms were not as bad as many in the celiac community. I did not grow up feeling “sick” like so many others did. I had my issues which I have talked about in my blog. But for the most part, I was pretty normal (though my parents may seriously beg to differ!)
My main symptoms started about six years ago and consisted mostly of constant stomach pains. Every night, I’d lie in bed complaining that my stomach hurt. And every night, Mrs. Dude would implore me to go to the doctor. And every night, I’d say “Oh…I’m fine”. But after about a year of this, and losing 15 pounds on an already pretty slim frame, I decided to go to a recommended GI in Princeton, NJ.
Being the organized soul that I am, I kept a food journal for a week before my appointment. What did it consist of? A bagel here and there; a few bowls of pasta; a few beers. I thought I was being pretty healthy. The doctor took one look at my journal and my symptoms and asked me if I had ever heard of Celiac disease. I had not. He said that I need to get tested ASAP.
The blood work came back first and he said they were the highest numbers he’d ever seen (I wish they said that about my SAT scores!!). He told me this as I was on the table about to get my endoscopy. So before I was put under, I pretty much knew. When I awoke, he said the villi in my intestine were pretty much gone and I indeed had Celiac disease…quite badly.
And so my journey began…
How did you feel once you were diagnosed with Celiac Disease? Tell me about your experiences of implementing a gluten free lifestyle.
How did I feel? Angry, mad, pissed, upset. Pick a strong adjective and that was me. Six months earlier, I got a diagnosis of bladder cancer and now I had to deal with THIS?
All I could think about was the food that I could no longer have. My focus was not on my health, but on what I would miss out on. Not the best attitude I admit, but at the time, that’s what I felt (and still do once in a while by the way).
I still remember going to Wegmans (our grocery store) for the first time after my diagnosis and just going up and down every aisle saying “I can’t have that. I can’t have that. I can’t have that.” It was so bizarre to me that all of the sudden there were so many foods that I could never eat again.
From there, Mrs. Dude and I immersed ourselves in all things celiac. We knew we had to be our own biggest advocates so we read and we read and we read some more. We brought all new kitchen cookware and utensils just for me. We made one shelf in the fridge and one in the freezer just for me. We made the pantry just for me. We made one of our kitchen counters off limits to everyone but me. I was my own island.
There is no way in h*ll I could have made the transition without the amazing support of Mrs. Dude. She was, and continues to be, incredible in her support and in trying her best to make me feel “normal”.
It was a tough transition though, accentuated by the fact that I was 100% gluten-free (never cheated, never will) but I was not feeling better. Going gluten free became easier but it took two years before I could feel myself begin to heal. And coincidentally, that was about the same time I stopped buying the gluten-free processed crap and focused on more natural foods.
It’s a real mindset to give up some of those foods. You buy Amy’s Pizza so you can still have pizza. You buy Pamela’s chocolate chip cookies so you can still have cookies. And I’m not knocking these companies. I’m thankful for them. But it wasn’t allowing me to heal. It’s now very rare where I’ll have something processed.
Do I miss it? Yep. But do I mourn my old lifestyle? I do not.
Do you have any tips for those new to the gluten free lifestyle, Celiac Disease?
I get this question a lot on my blog. And my answer is almost always the same: Patience. Lots and lots of patience. You will not adapt to your new life right away. Give yourself time to get mad, to mourn the loss of what was.
But during this time, DO NOT CHEAT. Not even once. You are done having gluten. Forever. The sooner you can accept it, the better.
You don’t have to love the idea. I don’t know one celiac who does. But you do need to accept it and embrace it because you have no choice.
What seems almost impossible when you are first diagnosed becomes difficult; moves up to bearable and eventually it becomes manageable. It never quite becomes easy but it does become something you can manage on a day to day basis.
And one big tip to celiac newbies: If in doubt, do without. It’s my new mantra. Don’t take chances if you’re not sure about something. That one minute of eating pleasure isn’t worth the days/weeks/months of pain you will endure afterwards.
Oh…and one last piece of advice. Don’t expect to feel better right away after going gluten free. Some celiacs do. Some don’t. I certainly didn’t. But be diligent, eat healthy, exercise regularly and eventually your body will begin to heal.
I love one of your earlier posts called “The bright side of having celiac disease (according to the Gluten Dude’s children)” because it’s very positive and I love #6 You’re not alone. How has Celiac Disease affected your family life?
Now that’s a good question. My kids actually gave up gluten just for me.
Oh, wait a minute…no they didn’t
I actually once ordered a gluten-free pizza from a local Italian restaurant while one of my girls got regular pizza. She asked if she could have a bite of mine. After taking a small bite, she simply asked “Does all of your food taste like this?” Gotta love it.
Look…I’m blessed with an awesome family. Mrs. Dude is the best support system a guy can ask for and my kids are acutely aware of my disease, are very concerned about my health, are supportive of me and are as careful with their food as two teen girls can be.
As much as I wish it wasn’t, celiac is our life. We can’t separate the two because it’s part of every meal we eat and every place we go.
And the fact that I don’t feel well much of the time has an effect on them to. As Mrs. Dude frequently says, “When you get sick, it affects ALL of us.”
So it’s real important not to get pigeon-holed into thinking the disease is just about you. It’s not.
Let’s talk about your honesty and outspokenness. Where does this awesome passion come from?
I’m pretty passionate about a lot of things; annoyingly so at times I’m sure. Perhaps it comes from being deathly shy as a kid and making up for all the things I wanted to say back then but never did.
I’m very passionate about our disease and the misconceptions of it in a lot of the public eye. And the only way to get my message across is to be strong about it. Not obnoxious, but strong. Yes…it’s a fine line I walk and sometimes cross over, but I know I’m reaching people and that’s all that matters to me.
How irritating are the following: celebrities, media, and folks (family, friends, other people) who don’t do their research about Celiac Disease, Gluten Intolerance, Sensitivity? I personally believe that some people are not proactive in researching anything and talk out of their butts. It’s irritating to me because I believe in educating yourself. How crucial is it to advocate and educate others about CD, GF lifestyle?
Well…I wouldn’t lump all of those people together in one category so I’ll see if I can break it down for you.
Celebrities fall into one of a few categories.
You’ve got the Zooey Deschanels, who have some type of gluten-sensitivity but are pretty classy and quiet about it. Annoyance scale: 0 out of 10.
You’ve got the Gwyneth Paltrows, who don’t have celiac disease but still believe you can be ultra-healthy by going gluten-free; and are very public about it. Annoyance scale: 4 out of 10.
You’ve got the Kim Kardashians, who are clueless and think it’s a weight-loss tool. Annoyance scale: 8 out of 10.
And you’ve got the Dean McDermotts, who actually have celiac disease and could be a great advocate for us, yet still eat gluten and are public about it. Annoyance scale: 10 out of 10. (But in all fairness, isn’t everybody on a reality show annoying??)
Don’t get me started on the media. They are always looking for a story and with all of the media outlets these days, there is high competition. So I expect nothing different from them then what they’ve always done: scrape the bottom of the barrel for a buck.
As far as friends are concerned, it would be nice if all of my friends were as knowledgeable about celiac disease as I was. But I certainly do not expect it. Why should I? They don’t have the disease…I do. Some of my friends get quite stressed having me over for dinner…understandably so. Not only do they need to worry about the food, but the cross-contamination as well. My message to them is this: I’m ok bringing my own food. Honestly. It’s not worth you stressing about. I’m there for the company. And the vodka.
At the end of the day, all I ask is that people be respectful of my disease. I’ve been lucky. The people in my life have been extraordinary to me. I hear much differently from a lot of other celiacs. It’s a real shame.
And as for family? They better be there for you 100%. It infuriates me when I hear otherwise.
Tell me about your blog. What is your goal with it? What new things will come to the Gluten Dude blog in the future?
I started my blog in October of 2011. Previous to my launch, I followed a lot of other gluten-free bloggers and I just felt there was a space that needed to be filled.
There were, and still are, many wonderful, talented bloggers in the celiac community. But many of them focus on the gluten-free diet aspect of the disease via recipes, etc. And like I said, these blogs are important.
But I wanted to be a voice that said “Hey, you know what…celiac really sucks…here’s all the crap we have to deal with…let’s share our stories…and make the journey together.”
And through this process, I sincerely hope to help people and be a strong advocate for those with celiac disease.
They say your blog isn’t a great blog unless you’re pissing off at least one person. I’m not sure I wholeheartedly agree with that, but I think people have an appreciation for honest, passionate writing and the response I’ve gotten in the past six months has been wonderful.
And kudos to the gluten-free community for opening their arms to me. Well, except the folks at celiac.com, but that’s a whole other story.
As for the future…who knows? I’ve always said I wanted to make a difference in people’s lives in some capacity; that I believe I’m here for a reason that goes beyond working and raising a family.
Perhaps my disease and my blog is part of this calling. We’ll see.
Dude note: If you’ve gotten this far, I owe you one. Next drink is on me.