Weight and Body Image with Celiac Disease

I lost 15 pounds in two months. I should be excited.

At 5'3" I now tip the scales only at 93 pounds. I should be horrified.

The truth is, since my diagnosis with celiac disease, I've transformed from, as my mother put it, a 106 pound "muscular Barbie" at the peak of soccer season to a skinny minnie and I don't know how I feel about it.

The largest part of myself hates my new, bony body. For most of my life, I devoured everything I could fit inside my mouth and never gained a pound. The surprised gawk of the restaurant staff when they picked up the empty plate that used to house a pound of hamburger and fries was as delicious as the food itself. When I finally passed one hundred pounds my junior year, though, it didn't bother me at all. In fact, I loved it.

At my Homecoming Dance pre-Celiac

Many people associate "thinness" with happiness, but from a lifetime of experience with it, I knew differently. I still cringe at the memory of fifth grade girls discussing my "chicken ankles" in the corner of the class. Not to mention that, with my gained weight, I could finally fill out a pair of jeans! People didn't (constantly, anyway) confuse me for a freshman! I even trained to bump up my weight for soccer season when I transitioned from the under 16 to the under 18 playing bracket.

Because of celiac's lovely hand, in only a few months, all the muscles I worked so hard to tone have disappeared. Goodbye Marilyn Monroe and hello pant-sagging prepubescent Justin Beiber (not) wannabe! Yet, at rare times, a small part of me looks at my slim body in the mirror and thinks, "Yep. That's how, according to everything I see, a teenage girl's body is supposed to look."

At my Prom, two weeks after diagnosis

The fact is, we live in a society that glorifies thinness. The magazines perched on grocery store shelves boast phrases like, "Lose 15 pounds in 30 days!" or "How I Lost Half my Body Weight!" And the odds of seeing a Victoria Secret model that mimics an oak tree instead of a twig? About as likely as me, the celiac, gorging on a gluten-filled buffet.

If anything, my weight loss has shown me that teenage girls are the largest victim pool of this media storm. As I've lost weight, the comments about it have steadily increased. I've noticed, though, that all those who have commented negatively are older, usually my friend's mothers. Considering I've never met either of these mothers before, my low weight is extremely obvious. Despite this, the people who know me best - my friends - haven't said a thing

I could excuse it as politeness or a lack of attention to detail, but we've talked about weight in the past. When they lamented over going from size 0 to size 1 pants, I ranted about the awesomeness of hips and curves. Apparently I'm the only cheerleader for gaining weight close by. Case point: what happens if I mention my desire to gain weight? Instant battlefield with lots of points at their own "fatty areas" and cries that, "You're so lucky!

This skinny jackpot comes with quite a price...

Well, if you must have a chronic illness, apparently since it keeps you skinny, celiac disease is first choice!

The bottom line? It's hard wanting to gain weight in a society obsessed with losing it. It's hard dealing with the conflict between my own healthy image and society's "thin" ideal. But, I'm determined to fight the against the current anyway so I can be not only healthy, but strong. And with the support of other celiacs who are also chugging down the protein drinks, I know I can do it.

A society that causes its people to value an ill, skinny teenage girl over her slightly larger but healthy alter ego? It's the sick one, not us.

*Also found at Runningwithspoon's link party!*

Have any of you struggled with weight before or after diagnosis? Have you experienced similar comments about your weight? Comment below with your stories! I'd love to hear them :)


  1. I definitely lost weight (10 lbs) after going gluten free b/c I was sick from cc and also I had a really hard time finding snacks that would fill me up. I gained a lot of it back from muscle weight during ski season.. but then studying abroad I lost weight too. sigh. I mean, I am happy with how I look but I have girls comment that "you're the skinny girl." I feel your pain, hang in there. Protein shakes from nutrasumma.com have truly helped with gaining muscle back and having more energy!!

    1. I know what you mean! It's crazy to have weight fluctuating this much, but with celiacs or gluten free eaters it seems pretty common. I would love to hear how studying abroad went while staying on a gluten free diet - I totally want to study abroad in college, so I'm trying to study up on how other gluten free eaters did in different countries!

      I agree too, that I'm not totally dissatisfied with my weight at any number, but people definitely comment a lot. Protein shakes have been a savior, though I'm still trying to find one that doesn't have too much sugar (upsets my finicky stomach). Glad to know I'm not alone! :)

  2. Hi Casey,
    I hope you get better soon. I have celiac disease. I was diagnosed when I was 4...I am 25 now, almost 26 :) So that was WAY before anyone knew what Celiac Disease was, and the doctors even thought it was an extremely rare disease. WRONG. There weren't a lot of options growing up to eat. There was only 1 type of gluten free bread and you had to order it from a catalog, before internet ;). So I was always the strange girl in class eating peanut butter and jelly, or fluff on rice cakes. Anways, growing up I tried to limit gluten, but would splurge if I want, again we didn't know the real repercussions. Eventually I stopped getting sick when I ate gluten, so as a teenager I ate whatever I wanted whenever I wanted. I even began thinking I probably don't even have this disease. But then I went off to college, my freshman year, I didn't do a lot of cooking and I tried to eat what I could at the dinning hall. I don't feel like I was doing anything different. But I was going through more stress related to school, and I went on birth control. They think your body amplfies your condition when you have more changes in your body. I started getting really skinny. I was already only 105 and 5'2" but I eventually dropped down to 93lbs (which I thought was cool) and my hair was falling out more, and my eyes had dark circles. I eventually went in to the hospital when I couldn't stop having bathroom problem. Normally my body would fix itself after I ate gluten, but it wasn't. Ever since then I have been much more serious about being gluten free. I had always heard that your body could get so damaged that it takes a lot more for it to heal itself. I am very sorry to hear that your body is having troubles recovering still. I hope this treatment will work. Try not to worry that people will think you are a freak. I don't think anyone would do that. especially since you seem like such a cool girl, people will probably just want to know what you are going through. This blog is great. I just wanted to share with you my story and to wish you feel better soon. Stay strong!

    1. I really appreciate sharing your story - for me, connecting with others who've experienced similar challenges as me and suceeded despite them is my bread and butter, inspiration wise. I hope that you are doing well, and thank you for the well wishes! Your comment made my day a whole lot better :)

  3. Casey! Your journey and desire to find curves is always safe with me here at school. I have battled anorexia since my junior year of high school. I lost 50lbs and every beautiful curve that I had. My hair was falling out, I was skin and bones, and everyone kept telling me how "great" I looked. Our country is a scary place when it comes to standards for women. Your story is so encouraging and, although I can't relate to you on the level of celiac's disease (and I won't pretend I can because I know that people just can't truly understand until they have been there) I know how it feels to be the only girl looking to find curves and build strong muscles that somehow disappeared. You are inspiring and it is amazing that you are so vulnerable with so many people through your blog! :)

  4. Hi Casey! How are you? I just wanted to post this, I hope you could reply here or send me an email (michemirasol@gmail.com). As I remember, I was in 5th grade when my doctor told me to avoid products that contiains lactose. Well for a kid, I didn't know what that was so Iate whatever I liked specially in school. Now, I'm in college and I think I have CD. I've been researching about CD and its symptoms and as well as its association with Lactose intolerence. I've had symptoms that of CD and I'm thinking of getting a blood test. I've told my parents about it but they seem to ot take it seriously. Yea, I know, bad parents!I just wanted support and stuff like thatfrom them, there's no one else I can talk to about it.
    Even though I am not positively diagnosed yet, the possibilities are high. My mom could be suffering from it too but she's not diagnosed. I have seen here suffer with some of its symptoms.
    Just like you, I've always wanted to gain weight. I'm short and I only weigh 35kg. Yes, I'm skinny and it just brought down my self esteem. I never gained weight.
    I'm hoping to get my blood tested soon. Thanks for reading. A respond would make me happy. ake care!

    1. Hi! Your post made my smile and I hope that my reply will indeed "make you happy." I'm sorry about your health issues, and know that while I haven't been in your exact situation, I feel your pain. I hope that you can get tested soon and, even if celiac disease isn't the answer, I hope that you find an answer that makes you feel better on all counts! I am doing alright, but have definitely had better days, so your response came at the perfect time. I am always here to talk about anything from celiac disease to college. You can hit me up at my email at casey.cromwell@yahoo.com any time. :) I wish you luck and am sending lots of happy tummy thoughts! ;)

  5. Casey,

    I really appreciated you writing this post. Prior to my celiac diagnosis I went from having an athletic build to a bony one too. In fact I lost 30 lbs., which I was very fortunate to gain back relatively easily after going GF. However, with the emphasis that our society puts on weight, it was definitely almost taboo to talk about the fact that I was losing weight so rapidly. (I ate wheat bagels like twice a day because I could get them down with my reflux, which definitely didn't help!) My family knew that I was sick, but the rest of society barely mentioned my rapid change. Instead, they would notice my different weight, and ask if I changed my hair, clothes, something else (as if to avoid the topic).

    I must admit that I only had a short period where I was self-conscious about being overly skinny, and was lucky to gain the weight back quickly. But, it's an issue our society definitely treats awkwardly. Great job on this piece again!

    1. Thanks for the comment and sorry for the late reply! It definitely is crazy how society's values and what is actually healthy can disagree! Glad to hear that you gained the weight back and are living the GF and happy life! ;)

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