I was never “hot” or “trendy” until I had celiac disease

by inspiredrd on May 10, 2012

I try to keep a positive spin going on around the topic of celiac disease. I enjoy gluten-free cooking, I don’t feel like I’m missing out on much in the way of food, and I feel a million times better than I did last year before my diagnosis. I let people like Gluten Dude do the heavy lifting when it comes to calling out food companies and health experts that get it completely wrong when it comes to the facts about gluten and celiac disease.  He does such a good job that I don’t always feel like I have something to add.  But this morning I watched a video from The Today Show that still has my feathers raised, so I knew I needed to call even more attention to it.

The coverage of celiac awareness month in the media has been frustrating to say the least.  Not only is there a ton of misinformation going around on major news shows, but the focus has been on celebrities and their gluten-free diets instead of on the seriousness of celiac disease.

Yesterday, Dr. Keri Peterson was being interviewed on The Today Show about the common causes of gastric distress.  In between talking about GERD (reflux), irritable bowel syndrome, and lactose intolerance, she brought up celiac disease.  She and the interviewer referred to celiac disease as “the new hot disease” and “the trendy disease”.  (Please excuse the quality of the video, I shot this on my phone)

First of all, that just trivializes everything about it.  Second of all, trendiness applies to things you choose to have.  I do not choose to have celiac disease.  And hey, I’ve never been considered trendy (case in point below).  Third, could she get away with calling any other disease trendy?  I don’t think so.  Gluten-free diets are the fad and the trend, not actual celiac disease.

And when Dr. Peterson flippantly says that it is “very easy” to cut out the gluten and heal your body with so many gluten-free products available, she downplayed the challenges we face every single day.

Yes I understand, I could have a much worse disease.  But that doesn’t mean that this disease is easy.

It’s not easy to feel unsafe at most restaurants.

It’s not easy to turn down food at a friend’s house, even if they tried to be careful for you.

It’s not easy to avoid cross contamination every single time I eat outside of my own home.

It’s not easy to plan a trip based around where and what I can eat.

It’s not easy to have to think about this disease all day every day whether or not I am feeling healthy because I know I am only one crumb away from getting sick.

It’s not easy to take every precaution and still get “glutened” then spend the next two weeks recovering from migraines, ataxia (difficulty talking), anxiety, joint pain, breakouts, stomach pain, bladder pain, night sweats, neuropathy, sleeplessness, etc.

It’s not easy being green (oh wait, that was Kermit’s line).

You get my point.

So now you know.  I am not hot or trendy, and neither is my disease.  How about you?

 

  • http://www.celiacandthebeast.com Erica D.

    All I want to say is…ditto! Great post, thanks for sharing!

    • inspiredrd

      Thanks Erica! So glad we bumped into each other on Wednesday!

  • http://www.vestellasvale.blogspot.com Dia

    YES!!
    I’m ‘JUST’ gluten intolerant, so even more ‘trendy,’ I guess …. You said it well!

    • inspiredrd

      You go with your trendy self!

  • http://www.adventureswithmyboys.com Sarah @mamasarahjane

    My sister can’t have gluten either, she doesn’t have celiac disease but she has colitis and after going through many different diet suggestions she found out that gluten was what caused her so much pain. She actually ends up in the hospital if she accidentally has something with gluten in it now. Anyways, the other night I went out to dinner with her and we got wraps and she just opened it up and ate the good stuff inside. The waitress kind of questioned her when she came back and my sister told her she couldn’t have gluten and the waitress said “Oh, I haven’t jumped on that bandwagon yet.” How rude!!

    • inspiredrd

      Ugh, people have no idea!

  • http://jeffbaj@gmail.com Jeff Bajenaru

    This lady is a jack ass! …but YOU are hot!

    • inspiredrd

      Oh my… :)

  • http://www.aholeistodig.blogspot.com hannah singer

    i don’t have celiac, but have several friends who are affected.
    bravo for writing this!!
    people are idiots sometimes, good gracious.
    xoxo

    • inspiredrd

      Thank you Hannah :)

  • http://www.theleangreenbean.com Lindsay @ The Lean Green Bean

    totally agree. as a future RD, i’ve spent a lot of time learning about celiac disease and it irritates me when people don’t take it seriously.

    • inspiredrd

      Thanks Lindsay. I hope that by posting this, I can educate health professionals along with everyone else.

  • http://glutendude.com Gluten Dude

    You absolutely nailed it Alysa.

    Every time I watch the video, the more angry I get. That 55 second sound byte perfectly exemplifies why it’s so hard for celiacs to be taken seriously. I am contacting one of the producers this morning and will continue to hound them via Twitter.

    Nice outfit by the way. You were totally trendy :)

    • inspiredrd

      Thanks Dude. I just couldn’t let this one go! By the way, I really thought I was trendy in that photo, but I think I was just nerdy :)

  • http://www.dishindietitian.com Torey Jones

    Excellent article, Alysa!

    • inspiredrd

      Thanks so much Torey!

  • Denise

    [quote] Gluten-free diets are the fad and the trend, not actual celiac disease [unquote]

    You are so right! That doctor was definately flippant!

    • inspiredrd

      Thank you Denise, she obviously fired me right up! :)

  • Jen M.

    This is freaking awesome. Thank you!!!!

    • inspiredrd

      Well thanks Jen!

  • Ashley

    I have really enjoyed your posts this month. I have been struggling with several symptoms of celiac disease for many years, but never even heard of it until I came across your blog. I have been diagnosed with everything from anemia and IBS to chronic headaches and depression (which I am definitely not!) I was so relieved to be able to finally talk to my doctor about the possibility of getting tested for something in particular, but interviews like this make me wonder if I will even be taken seriously. Thank you for being open and honest and spreading awareness about the truth of this disease!!

    • inspiredrd

      Ashley, your comment made my day! I have been through the ringer with doctors just like you. It was a relief to finally get a diagnosis, even if it’s not as “easy” as some would make it out to be :)

  • http://glutenfreetraveller.com/ Gluten Free Traveller

    Nice post, Alysa :) I wish celiac was a trend because trends pass. Celiac is here to stay, unfortunately!

    • inspiredrd

      Thank you, I know, don’t you wish this was a passing thing? No such luck!

  • Barbie Allen

    I am curious how you were tested for Celiac’s? I am waiting on pending insurance and had discussed in the past with my physician that symptoms I have had for years may be caused by Celiac diesese but we never discussed how I would be tested for it. Any input would be greatly appreciated. :) I am hoping to be tested within the next few months and finally find out why I feel so bad all the time!

    • inspiredrd

      Barbie, I went to a GI doctor who did some blood testing and found out that my antibody levels were elevated. She then did an endoscopy with a biopsy to confirm. Make sure to get tested before you go gluten-free, that is so important!

  • http://thryveco.com @miss_diagnosed

    Amen.

    Very well said. At first when I saw the clip, I took it as they were mocking the people who were mocking it – but I think regardless, the more important thing is the negative, disrespectful message that came out of it. I struggled for 12 years, with doctors thinking I was just too stressed and nervous, before a random stranger suggested I might have a problem with gluten/celiac. As a result of my seemingly never ending pain, I spent the last year developing an iphone app that lets you track what you eat and how you feel, in hopes that millions of people just like me will be able to figure out which foods cause their bodies problems. I learned I have many more problems than just gluten, and with doctors being too busy or not taking us seriously, its up to us to find the answer. The app is called Thryve and releases next week (its free!). Once thats out, I have plans to start an awareness campaign, completely design heavy – because I believe that’s what our message is missing. To get peoples attention, we need to do it with style and force. If anyone’s interested in collaborating with me, please please reach out. nicole@thryveco.com

  • Rick

    Celiac Disease is cruel. I am 62 years old and for most of my life was undiagnosed. Is cruel, trendy ?

    • inspiredrd

      Definitely not.

  • http://www.ccrainz.com Christina Crain

    Thanks for your post it has given me a little affirmation today that I am not crazy.
    I have just recently been diagnosed and only gluten free for 3 week. Everyone has thought I have just been crazy for years and now to find out there is a reason. But everyone still think I am being crazy and being a baby about what I can and can’t have and so tired of hearing that there is so much out there I can have. It doesn’t take away the fact that I can never have so many of the things I love.

    • inspiredrd

      Christina, I am so glad you have a diagnosis now. Hopefully everyone around you will start to learn just how important it is for you to be careful. There is a huge learning curve for friends and family of a new celiac. Keep educating and standing firm. And make sure to reach out for support from other celiacs!

  • http://aroundtheplate.org Kati @ Around the Plate

    This is such a great post! I love all the great myth busters you share and I really respect your openness on the topic.

    • inspiredrd

      Thank you Kati!

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