My Celiac is not Your Celiac…but we ALL need support!

Meet Jennifer…she’s one of us!

If you haven’t yet heard of Jennifer Esposito, you should definitely look her up.  She is one of a very select few celebrities with Celiac Disease whom actually “GETS” Celiac Disease.  What I mean by that is that she understands that it is a real disease, a serious disease, and a disease that, for many, does not stop at eating gluten-free.  She has a great website and company and is working on an amazing campaign to advocate for Celiac awareness (and the deadline is extended, so GET YOUR VIDEOS IN!).

AND she was recently “let go” from her role on Blue Bloods, as a result of her illness.

You can read about it at Deadline, but basically, Jennifer’s doctor ordered her to work a reduced schedule due to Celiac Disease, and when CBS didn’t listen, she collapsed on set.  The network does not believe she is truly ill and says she’s unable to perform the demands of her role, thus, they are putting her character on a leave of absence.  They are not allowing her to work, but due to her contract, they are also not allowing her to work elsewhere.

This is absolute hogwash.

What is worse, are some of the comments regarding this topic.  From people WITH Celiac Disease, at that.

“No one needs a reduced schedule due to Celiac.  Trust me…I have it.  I haven’t missed a day of work in 3 years.  She just wants sympathy.”

Well, good for you.

I have had a terrible headache all day, and yet this STILL makes me want to bang my head against the wall.

Gluten Dude, Glam Without Gluten, and Celiac And The Beast have all written their views on the issue, but I wouldn’t be doing my part if I didn’t chime in, regardless of how EXHAUSTING it can be, as Celiac And The Beast so accurately noted.

Here’s the thing.  This is happening to a celebrity.  So we all hear about it, and we’re all up in arms, and we can all write, tweet, and call the network, and maybe even do something about it.  And the reason that we WILL do this, is because we can.

We will do it because we can because HOPEFULLY, MAYBE, JUST MAYBE it will make a difference to the next NON-celebrity Celiac who is let go because of his/her health.  I know Glam Without Gluten is no longer working because of workplace harassment surrounding her disease.  Who was there to go to bat for her?  I know this has happened to others, with no one there to support them.  How many of YOU face judging fingers and smirks of disbelief?

There simply is NOT enough RESEARCH about this disease and NOT enough AWARENESS.

I SIMPLY DO NOT UNDERSTAND how someone can think that just because they have the same disease that it presents the exact same for everyone.  The simple fact that some people who have the disease are COMPLETELY asymptomatic…that’s right, free and clear of symptoms…should go to show people that this is not a one size fits all disease!

My Celiac is not Your Celiac.

And it definitely ranges in severity.  Jennifer Esposito seems to have a severe case of Celiac.  I, too, am a poster child for the crap end of the stick of Celiac Disease.  People seem shocked that she collapsed.  I’m not.  I get tired so easily from doing the smallest things.  I can’t work right now.  If I did, I’m sure I would collapse, as well.  I have headaches, joint pain, memory issues, concentration problems, extreme fatigue.  I honestly can’t remember right now if I’ve fed my dogs.  No idea.  Not much harm done, I can just feed them again (they truly won’t mind), but you can see there are instances where this brain fog could do some damage.  Some days the simple pressure of one foot resting on top of the other is enough pain to keep me awake at night.  And NO, I do NOT eat GLUTEN!

Those of you who know me, know I avoid that stuff like the plague.  And I know Jennifer does, too.  I even am cutting out other foods to see if it makes a difference, but no miracles, yet.  But wait…we’re only supposed to stop eating gluten, so that doesn’t really matter.

So why?  Why do some people miraculously feel better, some have no symptoms at all, and some struggle daily with a myriad of symptoms?  Why do some people incur countless damage while others are barely touched?  Why did I require surgery at age 30, while some people who were only diagnosed in their 60s seem to be doing fine?

For starters…does it matter why?  Well, yes, I would like to know!  But honestly, think about it.  Are all cases of MS the same?  Are all cases of cancer the same?  I could go on.  Why do some people deteriorate rapidly?  Why do some people seem unaffected?

We are all different.  Celiac Disease is an autoimmune disease.  The immune system affects SO much of our daily functioning and well-being.  Many people with one autoimmune disease have or will end up with multiple autoimmune conditions.  Plus, as much as I have not wanted to accept it for myself, there may be nothing “else” wrong, but it seems that a lot of the damage that has already been done can be permanent.

The better question is: WHY don’t we BELIEVE people when they say they are not well?

The curse of invisible diseases…as I know Celiacs are not the only ones who deal with this.

Seriously, folks, WE’RE NOT MAKING THIS SH*T UP!

You think this is how I want my life to be?  That I asked for this?  You seriously think I’m being lazy, dramatic, just want attention?  You think this is what Jennifer wanted?

So, yes, I get tired a lot.  Too tired to post, often times.  But I can’t be too tired to stand up for those with Celiac Disease.  We need to be heard and we need to be understood.  We need to cause an uproar over CBS’s shameful behavior in hopes of making a difference for Jennifer, but also in hopes of raising awareness for all others with Celiac Disease who also aren’t doing so hot, despite a strict gluten-free diet.

If it wasn’t for this community, some days I would feel all alone in this.

Let’s do what we can to continue to raise awareness.

FIRST, get your videos in to Jennifer Esposito for her Celiac Awareness Campaign.  The details are here.

Then, here are a few options to show our support for our fellow Celiac, because NO ONE should have to put up with this kind of treatment (via Gluten Dude and Celiac And The Beast):

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Categories: Livin' the Gluten-Free Life!

Author:sassyceliac

After countless years of illness and a final plea to my doctor during my third hospital visit in one year, I was told I have Celiac Disease in February 2011, at the age of 29. I have been exploring the world of gluten-free ever since! Of course, Celiac Disease is not the only thing that defines me, though it will be the major topic of this blog. I have also recently graduated with a Bachelor of Science in Kinesiology and a Minor in Psychology, both of which I am finding helpful in coping with this new dietary restriction and lifestyle. If nothing else, my years of university have made me a great researcher! I own a pug named Wilbur, who is my saving grace! Penelope, a Boston/Frenchy mix, is my newest addition. Dogs are precious...a true example of unconditional love. And as for the rest...I love singing, dancing, fitness, health, farm-fresh foods, cooking, learning, nature, laughter (where would I be without laughter?)...and helping others. If this blog can help even one person in any way, I would be honored :)

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23 Comments on “My Celiac is not Your Celiac…but we ALL need support!”

  1. October 23, 2012 at 6:39 am #

    In a blog full of wonderful posts, this is amazingly written and then some. Keep fighting the good fight Sassy. We’ve got a rockin’ celiac community that seems to be getting stronger by the day. We’ve come a long way. We’ve got a seriously long way to go.

    • October 23, 2012 at 6:06 pm #

      Thanks so much, Gluten Dude! I feel the same way…and every little bit counts!

  2. October 23, 2012 at 7:22 am #

    Bad*ss post, Sassy! You tell ’em, girl!

  3. October 23, 2012 at 7:27 am #

    AMAZING post girl. You are strong and such an inspiration. Days like this I am SO glad to be apart of such a wonderful supportive community. If no one “believes” us, that is on them, I know what I deal with day to day and could not make up half this stuff if I tried.

    XOXO

  4. Heather
    October 23, 2012 at 12:27 pm #

    I don’t have Celiac and I don’t have to eat gluten free but I fully support Jennifer and you and anyone else that has to deal with Celiac. I’ve already left a comment on the Blue Bloods FB page I’ll be tweeting them as well. I may not be able to change their minds but I will make sure that my voice is heard.

    • October 23, 2012 at 6:04 pm #

      That’s amazing; thank you so much!

  5. October 23, 2012 at 8:39 pm #

    Amazing job Sassy! ❤ My celiac is not yours should be the theme of the past few days. I can't believe all the awful posts I've been seeing from other Celiacs. Why wouldn't we be supporting our own kind?

  6. October 24, 2012 at 9:59 am #

    As the commenter, Heather, said in her comment…I also do not have Celiac Disease nor do not have to eat gluten free but I empathize with all who have this disease.

    In regards to Jennifer Esposito’s situation, I’m not surprised at CBS but yet I am surprised. It doesn’t sound like she is asking for the network to move mountains. Just to reduce her schedule a little bit and I don’t see how that could impact production all that much. She is a great actor and deserves a heck of a lot more respect for her part in Blue Bloods. The fact that she is being blocked from working any other gig really angers me and she has no pay coming in. It’s ridiculous!

  7. keturah222
    October 24, 2012 at 5:53 pm #

    I dont have Celiac, but I have Crohn’s so I do get how people feel with Celiac disease. Going gluten free has changed my world! I cant work a full time job. I dont know how Jennifer or any of you can work a busy schedule like that. I love Jennifer and I love BlueBloods, but health comes before anything. I dont get how they didnt know that she had Celiac when they hired her. :s Love, strength and good health to her and all of you.

  8. Ginny
    October 27, 2012 at 5:32 am #

    Sassy Girl,
    I have been so vocal in support of Jennifer and all celiacs all over the internet this week (and some would probably love to see me stop “talking” but that will never happen as long as I have breath) and you’re my last (but certainly not least) stop!

    Thanks for being a voice for us all–and for Jennifer.
    There is no way I could have continued working with this thing the past 5 years..
    I admire her–I admire all of you who do it.

    I hope you know I love ya and wish you all the best–since the day we first “met” on c.com– and I want you to please keep the faith that in time, you will feel better and you will have more energy. I am coming up on 2 years post-DX and finally, finally, realizing the horror of it all is reversing. Some days, I feel almost “brand new”.

    Every year is a healing year.

    Hang in there–like the tough cookie you are.

    Rock on, sister!
    xxoo Irish

    • October 27, 2012 at 7:28 am #

      Thanks so much, Irish, we fight the good fight 😉 Feeling almost brand new? That’s so awesome to hear from you, and definitely something awesome…and almost foreign…to hope for. I haven’t given up hope, I’m just not clinging to it, the excited post-diagnosis girl I once was when everyone tells you how amazing your life is going to be now. I’m just doing what I can right now to have a quality life, and if I get better…phenomenal.
      Keep on keepin’ on, Celiac in Crime 😉

      • IrishHeart
        October 27, 2012 at 7:35 am #

        Oh I am not 100% by any means, honest…, just better….I take it one day at a time.
        I know I still have a long road–muscles still impaired, joints and bones still burn, but I am in less pain, so I view that as progress.

        Yes! achieving a quality of life…good way to put it!

        We fight on, us warriors.:)

  9. IrishHeart
    October 27, 2012 at 5:36 am #

    I meant to post as IrishHeart, but it’s early and I am so tired today myself and well, ….you know it’s me anyway! xxoo.

  10. IrishHeart
    October 27, 2012 at 5:38 am #

    There’s a post awaiting moderation….sent to you with love. Man, I need some coffee….wake up, Irish!!LOL

    • October 27, 2012 at 7:29 am #

      Just got it..says here you sent it at 530am, my time 😉

  11. IrishHeart
    October 27, 2012 at 10:35 am #

    Sas—Did you know you are mentioned in the Huffington Post?

    http://www.huffingtonpost.com/2012/10/26/jennifer-esposito-celiac-disease-cbs-blue-bloods_n_2025547.html

    • October 29, 2012 at 11:28 am #

      Yes, someone tweeted me…unfortunately Huff (and the readers) are still missing the point…gluten-free doesn’t magically mean symptom-free for everyone. SIGH.

      • IrishHeart
        October 29, 2012 at 11:35 am #

        I hear ya. sigh

        I just quoted you on GDude.

Trackbacks/Pingbacks

  1. Out For (Blue) Blood | celiacinchilliwack - October 31, 2012

    […] The latest episode of Blue Bloods was on my PVR, so I watched it.  I honestly thought that Jennifer would be on at least one more episode.  For those of you who aren’t familiar with the shameful way Jennifer has been treated by the show/network in relation to her Celiac Disease, please read more here. […]

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