Think having celiac disease is easy? Watch.

celiac-video

Somebody posted this video on Twitter yesterday and I must have watched it 10 times already. It speaks volumes not only to the difficulty of having celiac disease, but to the stigmatism sometimes attached to it.

(If you can’t see the above video, here it is.)

Here are some of the highlights:

First off, I love the instrumental “How to Save a Life” by the Fray as the background music. It just seems to…fit.

:09 – “I hate when people call me a picky eater.

(I will never understand the cruelty and outright bitchiness of so many people in this world.)

:23 –  Being a picky eater implies choice.

:40 – My only criteria my food must meet is that it not be poisonous.

(We’re not asking for much.)

:50 – The breadth of foods that fall into the category of poisonous is extensive.

(I love the terminology. Celiac is NOT an allergy.)

1:16 –  Pre-diagnosis, I was stigmatized for being ill.

1:20 – Now that I have finally achieved health by adhering to my gluten-free diet, I find myself again being stigmatized; this time as a picky eater.

(And this is where my heart begins to break for her. Why must we insist on “labeling” people??)

1:40 –  It completely trivializes my condition. To equate someone with celiac…to a binge dieting LA type is insensitive and counter-productive.

(I think you know how I feel about this.)

1:55 – Can you even imagine berating a diabetic for not eating sugar?

2:03 – Why can’t celiacs have the same level of understanding and respect?

(Why indeed? Mostly because it’s associated with “diet” so many people view it as that.)

2:27 –  “No one likes the girl at the birthday party who doesn’t eat the cake.”

2:34 – “I’m always THAT GIRL and I really wish I wasn’t.”

I think I speak on behalf of the entire celiac community when I say I wish you weren’t too. But thank you for this video and for helping to get our message out there. Hang in there!

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22 thoughts on “Think having celiac disease is easy? Watch.”

      1. Wow, thank you so much for your site…have been a diagnosed celiac for 8 years now, and sometimes it is still so tough that this video actually made me cry!! I know EXACTLY how That Girl’ feels, I’ve been that girl, and it really and truly sucks. Now with all this celiac trendiness it will just make our lives that much more difficult. I am very, very lucky to live in Australia, where the awareness and diagnosis of celiac is excellent, and there are VERY strict food labeling laws. I wish all celiacs could live here – it’s still tough, but knowing that at least the government is taking responsibility for keeping celiacs safe makes me feel wonderful. Cheers mate!, keep up the excellent blogs! Karen in Oz

  1. I hate having celiac disease. The gossip and teasing that endures in middle school, the strange looks at the girl who brought her lunch when everyone else has pizza, then there’s the question that ALWAYS, no matter what, comes- “aw that must suck for you. Don’t you hate it?” I always say no. Then I find the nearest bathroom stall and cry. Birthday parties are the worst. I’ve been labeled as different, and nobody likes that. Especially in middle school. People think I’m some kind of health freak, and on top of that, I have a horrible, seemingly incurable case of POTS syndrome. I went to a basketball camp this summer? Worst week of my life. I came to learn basketball, but every 15 mins I would rest and put my feet up to even out my blood pressure. They don’t think i noticed, but I saw all the exchanged looks, all the whispered questions. They thought I was a wimp, a weakling, and loser. I was friendless an I ate alone, with my packed luck while everybody else ate pizza. And it was all because of CD. Sometimes I just hate the judging world. I’m a person who is trying to change my schools outlook on life by holding a bible
    Study on Friday mornings, and I think it’s soley because of the judgement. Is there anyone else who feels that way? And don’t give me a “comforting” answer, because that’s not what i need. I just needed to get it out.

  2. Thank you! This is amazing. I love the line, “It genuinely hurts my feelings.” Agreed. This is beautiful.

  3. Wonderful video for awareness!!! Yes it does suck at every birthday party having to say no thank you for the cake and still having guests try to encourage me to eat the cake so they feel better.

  4. This was hard to hear from a young girls perspective, meaning I read about this constantly on my 7 year old son’s behalf but hearing it…heart breaking. Thank you for sharing.

  5. One morning I went on a road trip with my mom, brother, and boyfriend. We stopped at a Tim Horton’s because I wanted coffee. I thought we’d just go through the drive-through but my mom wanted to go inside. Everyone decided they wanted to order lunch (there is absolutely NOTHING there that is GF other than the coffee). I was RAVENOUS and was hoping that we could stop someplace where I could find something I could eat but I was told we had to keep going. I was a little upset and frantically looked for something I could eat on the menu. My mom offered possible solutions that I kept having to say no to: soup (creamed or with noodles), yogurt parfait (with granola on top). I had actually decided to just get a wrap and eat the stuff inside (possibly contaminating myself but when you’re hungry, you’re hungry) and said, “I’ll just have to suffer,” but then I saw they still had breakfast on and their hashbrowns are GF (however, still possibly contaminated from the toaster). I got a couple of those (and yes, I did get contaminated from them).

    When we got back in the car my mom turned to me and said I shouldn’t be so whiny and picky about my food. My own mother. Due to a mild intolerance, she eats a GF diet but has never been tested for celiac and still enjoys her burgers and pizza without fear. She was the one who initially thought I might have celiac after witnessing my increasing illness. She is a therapist and holistic healer, and she was telling me I was being whiny when I was trying to find something to eat that wasn’t poisonous to me.

    That hurt.

    1. I’m so sorry. My family doesn’t see the risk either, and have on multiple occasions berated me for pickiness and being a whiner. This disease sucks. Period. We have to turn our senses off to the food we once loved, pretending we don’t smell the fresh-baked pasta and warm french bread.

  6. I know you’re not the one that made the comment, BUT DIABETICS CAN EAT SUGAR!!! That is such an ignorant comment that “you can’t eat that, you’re diabetic”. I have had diabetes for almost twelve years now and I can eat sugary products as long as I take my insulin. I came here because now there is a good chance that I am celiac and I’m extremely frustrated about it, to the point of tears. I’ll no longer be able to eat with my family anymore (and I live at home) because they constantly eat things like pastas or bread. I may even have to give up being vegetarian for five years because finding vegetarian and gluten friendly options are going to be too difficult.

    1. See, there’s the issue. People think that you can eat all of the sugar and crap that you want, as long as you cover it with medication and sugar. That is a very very BAD way to manage diabetes.

      As a diabetic of over 40 years, I can tell you… insulin is just as damaging to your cells as high blood sugars. So, if you continually eat sugar and foods that turn into sugar in your body and just keep taking insulin (which is exactly what THEY tell you to do, isn’t it??), you will likely develop some pretty awful diabetic complications in due time… just ask me.

      I wish that I had smartened up years ago and completely ditched the sugars and grains. I could have reduced my dependance on the meds and the insulin, and I would be a MUCH healthier person today.

      1. Sorry… that second sentence should have read, “People think that you can eat all of the sugar and crap that you want, as long as you cover it with medication and INSULIN.”… not “medication and sugar”… LOL!

        Although… I know a lot of diabetics who appear to be on that treatment plan…. LOL!

  7. I’m not celiac but this made me cry. A few family members are and I see how much it hurts them when people call them picky

  8. 1:55 – “Can you even imagine berating a diabetic for not eating sugar?“

    As a diabetic, I can assure you that I have indeed been berated for declining a sugary food or drink. I have also experienced being made to feel like a pain in the ass in restaurants as well as social gatherings. I have also felt the sting of being left out of events and being criticized harshly for bringing my own food and attempting to fit into our sugar and grain soaked society.

    I am not celiac, but I am definitely gluten sensitive. If I eat grain products, my belly bloats to the point where people congratulate me because they think I’m pregnant, among other things. So, I choose to eat gluten free as well as sugar free. This works well for me, as grain products do not work well for diabetics either (your body just turns them into sugar… a fact that escapes a lot of people).

    This is difficult for me, I can only imagine dealing with it as a kid…

  9. Thank you so much for posting this video. This is basically the story of my life. Everyone thinks you are being over reactive and they just don’t understand. It bothers me even more that it has become the “new trend” to be gluten free, but they don’t even know about cross contamination, and go on eating their French fries that severe people can’t have. (Fried in contaminated oil) I had celiac disease before it became a trend!
    Last year I had strep three times in a row (not knowing that it was celiac that was making me sick all the time) Then I got my tonsils removed, and got strep AGAIN, literally a few weeks later. After a year full of stomach and headache problems, I finally got diagnosed.
    Thankfully I have good doctors that are helping me through all the pain of being contaminated.

  10. Thank you for sharing this video. I was on a hike the other day, and when one of the guys saw my food, he said ‘oh, you’re one of those peope”. My food was salad and veggies for lunch. He referred to me being one of the ‘healthy eating people’, so I just didn’t respond. Because, yes, I am one of those people – people who don’t eat things that are bad for my body, digestive system and overall health. I might not have a choice about gluten and diary products – I can’t eat them. But I do CHOOSE to eat healthy food, because I want to be painfree, energetic and healthy. I could’ve asked him “oh, are you one of those other people” – the people who judge others according to their eating habits, and the people who eat so much processed and harming foods that they will develop some illness eventually too?

    I am the same type of person than everyone else – a person with feelings, a person who wants to be accepted and respected, regardless of what I can or cannot eat.

    Again – thank you for the video, and thank you a million for this incredible blog and community!

  11. hi I am shocked to learn that celiac can also mean obese and inflammation , my 18 year old grandsonwas diagnosed 5 years ago he goes gym 4 times a week hardly eats and getting bigger by the day, is there any help he is not getting any thanks rose

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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