Gluten Dude has gone Hollywood. Ok…maybe not. It’s New York City but I’ll take it.
I had the pleasure and the honor of being invited to Jennifer Esposito’s grand opening party of her Jennifer’s Way Bakery.
It was few months back and it was a great day in the city with the Dudette, followed by a special evening at the Bakery.
Unbeknownst to me at the time, Jennifer is part of a reality TV series called Playing With Fire on the E! network and they were there filming the evening.
Even with the cameras and the microphones, they had an amazing ability to blend into the background.
I wish they showed more of Jennifer’s speech at the end, and no…not because I’m in the entire shot. It was really a heartfelt, moving speech about her struggles with the disease and the opening of the bakery. She is trying to get her hands on more footage and I’ll post it if I can.
I know there was some hesitation from some within the celiac community about this show. There was concern that it would add to the “fad” aspect of our disease.
I assure you that you can put your worries to rest. Jennifer is all about the seriousness of the disease and while a lot of reality TV itself can indeed be pretty cheesy, she is doing a phenomenal job of raising awareness of our disease within the confines of the show.
Of course, nothing is ever perfect.
Jennifer tweeted the following to me yesterday:
Did you happen to see Playing with Fire last fri? You were in it at the opening. They also managed to edit when I said that “celiac is an autoimmune disease” and they changed it to “celiac is a gluten allergy”. I take it talking about an auto immune disease isn’t as “Fun” as an allergy. I truly don’t like people.
Then of course we joked back and forth about how inflammation, gas, hives, losing hair, under eye swelling, exhaustion, panic attacks and the ever popular threat of cancer is indeed a lot of fun.
Anyway, here’s a clip of where they spliced in the revised wording.
Totally lame on the part of E! and I would love some sort of explanation.
But that’s celiac in a nutshell. Two steps forward and one step back.
But we’re getting there.
Thanks to Jennifer for the invite.
Thanks to the Dudette for sharing the day with me.
And thanks to you all for hanging with me.
JE-
Congrats on your bakery. I hope you sell a million cupcakes, you rock.
GD-
It may just be me (or the unsuperior nature of this jersey piece of junk computer) but the links are not active to me. In any case, you and your daughter look awesome. You were totally staring down that cupcake in the first pick. You should eat more often. ha! kidding…
xo-
Jersey Girl
Hi GD!
Congratulations to Jennifer and so great you were there to celebrate with her! Can’t wait to visit the bakery and try the goodies. Please remember that allergies are also not “fun”. As a mom of children with life-threatening food allergies, it pains me to see that statement. Celiac and food allergies are both very serious diseases. Let’s not belittle one to give more credibility to another.
Jackie
Oh my goodness Jackie…we so did not mean it that way.
Part of trying to raise celiac awareness is getting the facts across about the disease. It’s not an allergy and it was strange that they edited it to say that it was.
I was not belittling food allergies in any way, shape or form I assure you.
I know you don’t actually FEEL that way! Just want to let you know how it can be read. I want the food allergy and celiac communities to stand together against any type of misrepresentation of our very serious issues. I have the misfortune or fortune depending on how you look at it) to be able to relate to both. 🙂
Hey Dude
So happy to know you my friend. Constant truth about what goes on with trying to get the right word out about this disease. I know first hand how hard that journey is. Why the show would edit where i say its an autoimmune disease here in this clip and let it play in other episodes is mind boggling.
It’s just the fact that people DO NOT get this disease at all and I’m starting to believe they really don’t want to. It breaks down to many aspects for them. One being to really take a close look at what we are being given as “nutritious” food. Two, making this disease a true disease NOT an allergy, maybe health care would have to take it seriously and pay for some of our medical needs.
Both involve money and where money is involved, forget it.
I know we are not going to change the world but my HOPE in doing shows like this is to bring to the viewer some info. Yes, in the confines of nonsense (believe me they won’t show it any other way.) I’ve tried to also make it so that celiacs out there who are confused, feel alone, scared, an outcast, feel like they are NOT alone and more importantly NOT crazy.
I felt this way for many years and would have LOVED someone like me to talk to. Celiac is a tricky autoimmune disease (in any interview u have ever seen me in that is the first thing I say) and is HARD to say the very least.
That’s why i thank the celiac community and Mr Dude for keep pushing on, helping each other and sticking together.
Be well
Jen Esposito
Just keep doing what you’re doing Jen. We’re making progress.
Hey GD,
I do not have Celiac Disease and I certainly do not understand the tricky intracacies needed in the every day battle to manage it. What I do know is that heroes do whatever they can to compassionately prevent the suffering of others (only in honorable ways). When such well-intentioned people form a TEAM, the beginning of a special journey begins. As a direct result of your educational sharing and awareness raising efforts, I am confident that the health of countless lives have already been drastically improved. I hope you continue to connect with other positive role models who share the same goals you have in regards to helping others live as healthy as possible. The greatest act of caring anyone can ever do is to reach out to both those you know AND those you will never meet to give them tangible & timely assistance and the strength to effectively battle their hardship. Best wishes and most importantly, THANK YOU hero!
Dang Chuck…thanks so much!!
I hope Jennifer’s Bakery does well and when I am in NYC next, I’ll be sure to drop in.
Best wishes to you, JE!! 🙂
Dude, the videos will not play for me either. 🙁
I watch people I love suffer with allergies all the time and I know how difficult it is to deal with them. Saying that I, too, do not want celiac labeled a gluten allergy does not mean I am belittling allergies, it means I just want the disease to be understood for what it really is.
It is a potentially life-threatening autoimmune disease–and for anyone to edit out JE’s words and insert theirs seems counterproductive to the intent of shedding light on CD.
All we can do is keep trying. Jennifer must be able to voice her concerns to the producers and get this straightened out?.
Aarghh! Internet Explorer won’t play the videos.
The only thing Microsoft could build that doesn’t suck is a vacuum cleaner.
Working on a fix.
Hi Irish Heart!
I have celiac disease and so does one of my boys. I agree with you re:
1. Wanting celiac disease to be represented as what it is, an autoimmune disorder and not and allergy.
2. Editing out Jennifer’s words and replacing them with anything other than what she said is wrong.
3. Best wishes to Jennifer on the success of the bakery and can’t wait to visit myself!
My issue was with the statement above and in the clip that said they chose to represent celiac disease as an allergy because that was more “fun” or “sexy” than an autoimmune condition. I don’t know what their interest or motivation was to use the word allergy instead of autoimmune disease but I would never assume it was either of those things based on my experience with food allergies.
It was really cool to see GD and the Dudette in the pics! You must have been quite honored to be there!!!! The only bummer was I could only get the audio from one of the clips and nothing from the other. Either way…the audio was cool and you drooling over the yummy deliciousness was awesome!!! Too bad you didn’t have a napkin at the ready Dude!!!! Just kidding! 🙂
Thanks Donna. I did indeed drool on more than one occasion during the course of the evening. I can only hope the cameras did not catch it.
Awesome that you got to attend the grand opening! I know I’m heading to NYC sometime next year for the first time so I’ll be excited to visit there too. I still think it’s ridiculous that they changed the words from “auto-immune disease” to “allergy”..but like you said, it’s a start. Hope you enjoyed your time there!
Thanks Taylor. If you stop in, be sure to introduce yourself to Jen. She’s good people.
Thanks for sharing the clip from “Playing with Fire.” The food and bakery look amazing and like a great place for those of us with Celiac Disease (and our friends and loved ones) to be able to eat safely and socialize. It was refreshing to see being gluten free not being minimized or alluded to as being just a “trend.”
Thanks so much to both you and Jennifer E. for all that you have done, and continue to do, for the Celiac and gluten sensitive community. I am looking forward to visiting Jennifer’s Way when I am in NYC and will spread the word.
Jess
Thanks Jess. And your blog is a very important resource as well. Nice to have someone from the medical community have our backs.
Thanks for sharing the ‘grand opening’ of Jennifer’s Way bakery with us. Looking forward to visiting next time in NYC. It doesn’t happen very often that we can enter a bakery/eatery where everything is available to us .. such a treat, and i’m sure it was all drool-worthy! What a great daddy/daughter outing! Does your daughter have celiac as well? (Hope not…). You and Jennifer have done a great job of getting the facts out there that celiac is an auto-immune disease .. don’t know why it would be edited otherwise. Thanks to you both for continuing to advocate for the celiac/gluten-sensitive community.
Thanks very much Paula. Dudette is celiac-free…thankfully.
I was recording “Playing with Fire” and had completely forgot! Got home last night (after reading your blog) and watched the episode. It was really great to see what a wonderful bakery Jennifer has created. I sincerely hope it’s a huge success! Next time I’m in NYC, I’ll make it a point to stop by and get one of those chocolate chip cookies (whoever was running the camera appeared to be obsessed with them too since they kept pausing on the tray!)
And, Jennifer’s mom was a riot! Loved the holy water 😉