Gluten Dude

The title of this post is “Finally…A Celebrity Gets Celiac Disease”.

But let me write it a bit more phonetically.

“Finally…A Celebrity GETS Celiac Disease.”

As in understands; takes it seriously; advocates.

If you’ve followed this blog for some time (I love you!), you know my relationship with celebrities and gluten/celiac isn’t a pretty one.

I’ve railed on Kim Kardashian (a few times).

I’ve wondered about Channing Tatum.

I’ve spewed about Miley Cyrus (and the media).

I questioned Lady Gaga.

I pleaded with Gwyneth Paltrow.

And I unloaded against Dean McDermott.

But finally, we have a celebrity with celiac disease who sees this crappy disease with the same eyes that most of us do.

Her name is Jennifer Esposito.

Confession time: Up until a few months ago, I did not know who she was.

I do not watch TV unless it involves Jon Stewart or the New York Giants.

But this past summer, I was invited to Schar’s first U.S. facility opening and it said Jennifer Esposito, who has celiac disease, would be a special guest.

I was interested in hearing her story. I wanted to make sure she would be a good advocate for us; that she really understood the devil in this disease.

When she began to speak, I breathed a huge sigh of relief.

She began to tell a story of a hospital visit when the staff didn’t even know what celiac was.

She said “We have a lot of work to do.”

Sadly, after what I think was less than a minute, she was done.

And the next two hours were spent listening to a bunch of suits verbally orgasm over each other about how awesome Shar and the new facility is.

There was not another word spoken about celiac disease.

And I said “We have a lot of work to do.”

But Jennifer is doing her part and I couldn’t be more pleased. (I know…how often do you see me pleased??)

Please take two minutes and read this interview with Jennifer on Huffington Post.

Here are some highlights:

- “My symptoms were all over the board. From stomach upset, exhaustion, joint pain, sinus infections, dry skin and hair, panic attacks, depression, back pain — the list could go on.”

- “It took 20-plus years for a proper diagnosis, not to mention countless [...] doctors and specialists. To this day, I still deal with the side effects of being a celiac and repercussions of improperly being diagnosed over the years.”

Dude note: Dang lazy-ass doctors…that’s all it is.

- “When the doctor called me with the results, she said ‘You have the highest case of celiac disease I have ever seen, and I don’t know how you are existing.’”

- “There is a misconception that if you remove gluten from your diet, you dramatically feel better. This is not true. Yes, many of the stomach issues and other ailment start to subside, but this is an autoimmune disease. Like any other autoimmune disease, it needs your attention everyday!”

Dude note: As a fellow celiac, YES! The mainstream opinion seems to be if we eat gluten-free, we’re fine. That’s what I thought upon my diagnosis. But as story after story on this blog can attest to, that just ain’t the truth.

- “I am determined to educate and make people aware of the truth about this disease.”

- “I believe that the medical industry needs to focus on treating the individual person, the whole person, body and mind and not about money and mass studies of a disease.”

- “For a full-blown celiac patient there is no magic pill for this disease, not even a gluten-free diet. You must constantly be aware of what you are eating and maintain a healthy lifestyle.”

- “Now we are also faced with a bigger problem. Gluten-free dieting is becoming a fad thanks to high-profile individuals who are removing gluten to achieve weight loss. This makes me want to scream! Going gluten-free may be a trend now, but there is a medical need, a dependency on being careful about not eating gluten and having meals properly prepared to prevent cross-contamination for the millions of people [who] have to deal with celiac disease. I’ve experienced odd looks at me from wait staff when I say I need my meal to be completely gluten-free with a “yeah right” kind of attitude now. People are becoming cavalier about gluten-free, because they believe it’s the new quick fix to getting skinny. Well for the people whose lives depend on it to live, lets just say we are not too happy about this.”

Dude note: Is it possible to love somebody you’ve never met??

So fellow celiacs, let us welcome Jennifer into our community with extremely open arms.

Let’s work together to continue to be the best damn celiac advocates that we can be.

Let’s join hands in denigrating the gluten-free diet and putting the focus back on the disease itself where it belongs.

And to you Jennifer I say this: I’m sorry you’ve been afflicted with this disease. It’s a journey I wouldn’t wish on anyone. But by playing the advocate instead of the victim; by taking it seriously instead of half-ass; by going public instead of staying quiet; you are doing more good than you could ever imagine and hopefully that will give you as much satisfaction than a closet-full of Emmys and Oscars.

One final note: Jennifer has a nonprofit organization, Jennifer’s Way, to help educate the public about celiac disease. She is currently running a celiac campaign that will simply rock. And you get to be on camera. So put on your best celiac face and be a part of the campaign. Thank you.

37 thoughts on “Finally…A Celebrity Gets Celiac Disease

  1. I like that she was “real” about it. She said almost the same things we say about going out to eat and having waitstaff not take her seriously because of the “GF fad”.

    She told the interviewer the ugly parts of celiac (admitting to panic attacks is not easy as there is a stigma attached to it) and that she still struggles with symptoms. Despite all that, she has returned to her acting work, opened a bakery, wrote a book and established a non-profit.

    People just do not understand the ramifications of this disease.

    I weep every time I read yet another person’s story of suffering for 20 years and being let down by the medical community.

    Having a celeb who GETS this thing–one who can reach a wider audience and speak about the horror of it–is a gift to the celiac community.

    While I would not wish this thing on anyone, I applaud Ms. Esposito
    for doing all she can to educate others and somehow, make sense of all that has happened to her by “paying it forward”. This is what I have tried to do, this is what the G Dude does, this is what so many of you wonderful , talented GF bloggers/writers do… and this is what we all should do.

    We all “have a lot of work to do”.

    So, hooray for Jennifer Esposito!!! –for shedding a bright light on the reality of Celiac Disease and using her “celebrity status” in a positive way.

    You go, girl!

    and P.S. If you should happen to read this, I love you on Blue Bloods. Maybe Jackie can be revealed as a celiac, on an episode someday??

    Thank you for all you do!

    • Did you know that she lost her job on ‘Blue Bloods’ because of her disease? She was apparently experiencing severe exhaustion among other debilitating symptoms, even passing out once at work. Her doctor ordered rest after that episode. The show’ s producers labeled this behavior as difficult and a ploy for special treatment and perhaps future salary demands. Her character was recast.
      She has stated that they viewed celiac as a made up illness.
      I’m glad that she spoke out about this outrageous prejudice, we’ve all faced it in one form or another but that said I haven’t seen much coverage of what really happened there.
      Unlike you gluten dude I do follow entertainment news! Giant unapologetic movie and TV addict!
      Love the blog. Thanks for keeping us so informed.

  2. Ok. I have to start by saying I LOOOOVE Jennifer! Both on Blue Bloods and as a Celiac advocate. It is because of HER that I did NOT have to wait years to get diagnosed. It’s because of HER that I investigated WHAT Ceilac was and then went to a doctor to get diagnosed. It’s because of HER that it took only 6-8 MONTHS from beginning suspicions to official diagnosis. And for that…..”thank you” JUST. DOESN’T. CUT. IT!!!!!!!

    I am so glad she has started her organization and hope that I can help in some way some day (a little camera shy…..gotta build up the courage to do the video thing…. LOL). I KNOW that she will do great things!

    • I loved her on Spin City and I love her on Blue Bloods (you should all check it out when the new season starts up!!) – but I love her even more now!! 10 years ago when I was first diagnosed…. I always said – we need a celebrity who has this disease to come out and be the spokesperson for it. But for the longest time, no one stepped up. Little did I know that many years later – we would get the “GF fad” crowd of celebrities to ruin it all for us. But, finally… FINALLY… as GD said – we have someone who truly GETS it!!!! Thanks, Jennifer!!! :)

      • Yes, she was great on Spin City!! and in Crash and other films.

        I wondered where she went after Spin City and I was thrilled to see her back on TV on Blue Bloods.

        She was on Letterman a few months ago and she brought him a GF cupcake she had made and even though he goofed on her for it, she was so poised and kept her sense of humor.

  3. I Just wanted to thank you, gluten dude for your kick ass blog. You inspire me every day, you were the first website I found that helped me self diagnose a gluten intolerance. I am in my sixth month of GF living & although it is annoying and expensive i know i can not go back to how i felt half a year ago. I believe that my gluten intolerance started after a three week course of antibiotics to treat h. pylori (do yourself a favor if you bing image it you might regret it). Or course this maybe coincidental but I doubt it. I am considering starting my own blog maybe named Gluten Free Jersey Girl, any tips Gluten Dude?

    • I know this is off topic, forgive me, GD :) I cannot help myself.

      but after any course of “big guns” antibiotics (especially that cocktail they prescribe for the treatment of h. pyrlori) you should take probiotics and replenish your gut.

      Just a suggestion.

    • The more gfree blogs the better. Some tips:

      - Don’t use blogger or any other free service. Download a premium WordPress template and make your blog look awesome.

      - Blog what YOU believe in…not what you think others believe in.

      - Blog with passion.

      - Blog with humor.

      - Blog frequent.

      - Communicate with others in the community.

      That should get you off to a decent start!

        • If you use blogger, you don’t control anything. If blogger goes down, there goes your blog.

          I actually run a web consulting company and am aiming to launch a new blogging platform by the end of the year. Will keep you posted.

          • oh that made my stomach jump a bit at the “if blogger goes down you lose your blog” …

            yes please would appreciate being kept in the loop about the new “blogging platform” … thanks :)

  4. I am thankful the Jennifer for her real and deep understanding of the effect she welds on the Celiac Community by her honest and relevant advocacy of Celiac Disease.

    I am on the Board of my local chapter of the Celiac Association and we are always in the process of reevaluating how awareness is provided, and what we can do to step it up and help people understand the importance of learning about Celiac Disease and Gluten Intolerance. I share Gluten Dude’s frustration when you see celebrities mis-informing the public ~ so Ms. Esposito is a true breath of fresh air. I now follow her blog, twitter and facebook … and she will become one of my regular reads like Gluten Dude. ;)

    Awesome … real information … that does my heart good … :)
    Thanks for the re-posting of the highlights of this article GD … appreciated. :)

  5. Agree with with the person who said you need a LIKE button for your post and comments. The post is fantastic and as always so are all of the comments. My days are much better because of all of you. Thank you AGAIN.

  6. While I too feel for her getting celiac disease, I rejoice with you that she actually GETS it! We need advocates like her and that Ms. America you interviewed before. Thanks for posting this!

  7. Jennifer actually did a show on Food Network or the cooking channel about her disease and how she was managing it. She’s even written a cookbook. I think it’s called Butter and sugar. Can’t remember. It was a great program though.

    • …aha, he is an “integrative MD”– which explains the supplements she says she takes for a leaky gut.

      Some of those nutritional supplements reportedly help with gut repair and reversing deficiencies (L-glutamine, amino acids, vitamin D, calcium, etc.), and some don’t do much of anything. There is no set protocol and everyone responds differently.

      It works for her, so that’s good!! I see she also takes probiotics, which I am guilty of pushing on everyone. :)

  8. You know,guys, Mr. IH and I just read her whole story on her website–her list of symptoms– and all the doctors she saw, the tests she had, the drugs she was given, the way she was treated (and lack thereof?)– for YEARS? and I’m sobbing for her ….and the hubs said quietly….she sounds just like you.

    There are so many more stories like hers and mine.
    I read them every day on celiac.com. And there is something fundamentally wrong with our medical system when people are not being HEARD and are misdiagnosed/undiagnosed for 10, 20, 30 years or longer… and left feeling like death just might be easier.

    I applaud her for taking this nightmare she survived and turning it into something good. It’s all any of us can do.

  9. I would loooove to know what Jennifer thinks about Kim, Gwyneth, Miley, etc. and their so-called gluten-freeness. But I suppose she could never criticize them openly, since she has to work in the same business, and I’m sure they could get her black-listed.

  10. Good for her. I could relate to most of her symptoms. As for Schar, they make great bread and chocolate-covered shortbread cookies. I have no gripe with them as long as they keep the cookies coming.

  11. I would like to say hello to all my celiac friends and say thank you to Gluten Dude and his followers. We really do have much work to be done to bring awareness about this disease that truly (sorry) sucks. I will do everything I can to get this disease the proper attention it needs. In the works is a taping on The Talk, Fox Files followed me for a day to see what life is REALLY like for a celiac and hopefully (cross fingers) a one to one with Elizabeth Hasselbeck on the view, oh boy. I deal with this disease as many of you do everyday. It has changed my life in many many ways BUT it has brought me to this passion to educate and help that i wouldn’t change for the world. So the comments that say thank you and that I possibly helped someone not suffer as long as I did means more to me than you can ever imagine. Better than any oscar or emmy, Mr Dude. :)

    My very best to you all
    Much love
    Jennifer

  12. This is the exact same headache that I’ve been dealing with on a forum where people who are supposedly serious about being gluten free are basing their diet on the fact that a couple Olympic athletes went gluten free for a performance boost.

    What those people neglected to notice was that most of those athletes are either celiacs or have severe gluten intolerance. But, if you mention that on this forum, you get blasted to hell and back for being “negative” about whether or not a GF diet can be healthy for absolutely everyone.

    No one notices for years, then suddenly celebs and athletes do it and people are falling all over themselves to do it.

    Herd mentality. UCK.

  13. thank for sharing this, I also have suffered from it and still maybe am.

    I couldn’t focus,talk to people and do what was aspected of me.

    Teachers said I had a learning disorder and peers labeled me as retarted. cried everyday as a child.
    I began to believe what everyone said and I had become obessed with myself.

    Until at the age of 19, I took action. for some odd reason, I found myself looking for something connected to my thyroid problem.

    it was celiac, stopped eating gluton and felt completly different inside.
    memory improved,have more energy, can think more now and I feel like life isn’t really going by as fast.

    and my blood test came out positive, but God led me to diganose myself.

    Anyone who is told they have a learning disability, I think should get tested for celiac.

    • Hi Amanda,

      I am sorry you have suffered from the neurological symptoms as well.
      I could not believe what it did to my brain. Just devastating.

      It is a shame no doctor knew that thyroid diseases are often associated with gluten intolerance/celiac.

      But– good for you for figuring it out!!

      I agree with you completely and I think that some people labeled “ADD” and bipolar and hyperactive, anxious & depressed are probably having gluten-induced symptoms and would do well to be tested. Even if the tests are negative, a trial of GF and DF would be wise to see if those symptoms improve.

      My guess is….they would. I hear stories like this often.

      Hope you continue to feel better and better!

  14. Hi Gluten Dude: I was recently diagnosed with Celiac disease and it has been a journey to say the least. I do feel better, in fact my anemia was gone after 2 months after going gluten free. But I digress, I still have issues with my guts. Even though I know I am healing, my colon is doing so many flip flops that sometimes its hard to cope with. I believe that 2 years of constant constipation took a big toll on the large and small intestine that my body is trying to “catch up” so to speak. I have missed work because of it and hope that I can keep working. I really love going gluten free because I FEEL so much better. I have more energy and that’s what was missing from my life. I was on the Atkins diet for about 3 years. I only went off the diet because my son thought Atkins is a quack and I looked too skinny to him. So I started adding whole wheat as well as other grains to my diet. Well, I felt awful. My guts would be in knots. I got progressively worse and that sent me to my doctor who sent me to a gastroenterologist, who in turn did a colonoscopy and endoscopy. My biopsy was positive for Celiac disease. What a shock! I remember watching a show on Dr. Oz about celiac disease and musing “I’m glad I don’t have that crap”. Well I do. I think the Atkins diet and Paleo diets are not far off from the mark.

  15. Nice post.Hi i have read your topic.so good so I want to share some news International News – Read latest International news . I deal with this disease as many of you do everyday. for more detail visit@http://www.daily.bhaskar.com

Please leave a comment

Your email address will not be published. Required fields are marked *

What is 9 + 11 ?
Please leave these two fields as-is: