Have you ever thought about your body image, if you live in america I bet you have. But, have you ever thought how it could relate to your perception of diseases such as celiac disease? I have, and it was not a pretty thought…
I attended a workshop the other day called ‘Raising Healthy Girls’. It’s focus had nothing to do with Celiac Disease, and instead was related to the media’s influence on our younger females and how it influences all areas of their lives. The primary teaching focus was how to teach them media literacy, how to help them have healthy diets and help them understand the cultural differences in body image and what a healthy body image really entails. This last part struck me.
Different ethnic groups value different body types as ‘womanly’. With African Americans it is more about health curves and voluptuousness. Hispanics also value a fuller figure, although less so then African Americans. Asians have a view of thin and small as their ideal women, and then there are Caucasians, specifically white america’s. This dominant culture values thin, tall and beautiful, with anything not meeting this ideal as skewed. We portray this in every form of media possible, creating an environment that is high in eating disorders and poor self image. Unfortunately, other ethnicity with healthier body images are starting to follow suite, with these issues rising in those populations.
As I sat there assessing this cultural shift in my mind I realized it may not stop there. In fact, maybe our culture’s body image, and focus on ‘skinny’ as beautiful and healthy, may be altering the way we view diseases that make us malnourished and sick (for example celiac disease)…To go further, maybe these perceptions even PREVENT us from seeking medical attention until things get real bad because we are skinny… If this is the case, This is a BIG problem.
I came back from the workshop and searched the internet for some connection, some research on body image and celiac disease, yet found nothing…How could that be possible? I couldn’t be the only one to think of this, could I? Consider this: In Europe, a variety of body shapes and sizes seems to be more tolerate across all cultures (from what I can tell). In addition, many countries also screen for celiac disease in childhood, or are more prone to screen in general. Patients even report an increased social knowledge of the disease. Is there a coincidence, or a factor of cultural body image?
So, I ask you:
1. Do you think our American culture’s views on Body Image and weight influences and/or hinder our treatment and/or diagnosis of Celiac Disease?
2. If you have Celiac Disease, did such perceptions have any impact on your seeking treatment and/or receiving and diagnosis?
Think hard and share, I want to know your story and I sure others do to.
In my next post about this I will share my story, and some other thoughts on the link between body image and celiac disease. Stay tuned and please share your story!
I know of two kinds of celiacs. My husband’s boss has celiac disease. His family is Italian, not Celtic. (Remember, until WWII Celiac disease was the #1 killer of babies born in Italy, esp. Naples, where his boss and my own family are from). He is maybe 5’10”, about 130. He is absolutely emaciated, hair thinning, bony, bad teeth. He eats and eats, and just cannot keep his weight on and his energy up- but he does try. On the other hand, I have adult onset celiac disease, symptoms slowly appearing in my 20s, full blown at age 38, diagnosed 11/1996. Initially it appeared as severe bloating the week before my period, to the point that I needed 2 different sizes of pants. I had menstrual problems, endometriosis surgery twice and hormone therapy to have my twin sons, now age 21. At age 35, I began having diarrhea nonstop 2 weeks of the month- pre and during period. My doctor gave me hormones, because he thought I was going through early menopause, my GP gave me antacids, he thought I had an ulcer. Antidiarrheals made me sicker. By the time my Dad died suddenly of heart failure in Dec 1995, I was 140 lbs hematocrit 9.6, and I looked like hell. I couldn’t hold food down. I was in the bathroom sick after every meal. Finally I was sent to a doctor, who did an endoscopic and colonoscopic study on me and found a corroded duodenum. He sent the biopsy to Sloan-Kettering in NY, and I was finally diagnosed. I am now 54 years old. Doctors have determined that in the years before my Dad died, he spent a lot of time in the bathroom after meals because he had celiac disease. Dad’s Mom was English-Irish, his Dad Dutch-German (Celiac disease was discovered by a Dutch doctor). Mom’s family was from Naples, she had two baby brothers die mysteriously at a very young age, and a sister who is 89 and has been chronically ill with gastric problems as long as I can remember. My Aunt would NOT go for the Celiac test after I was diagnosed. My Mom was lactose intolerant, and suffered for as long as I can remember from constipation. When she was 40, her neck swelled up suddenly; the doctor called it Hashimotos Thyroiditis. My Aunt with the gastric symptoms and another Aunt also had Hashimotos. This is an autoimmune disorder that often pairs with celiac disease. I suddenly had a swollen neck a few months before my 40th birthday, the week my Mom died from complications caused by ovarian cancer. Mom knew right away what I had when I told her what the doctor said, and reminded me that she was also 40 when she was diagnosed, as were my Aunts. At age 54, I have diabetes, asthma (from work exposure), have problems with my weight (keeping it down; no matter how little I eat, or how much diarrhea I have, I can’t lose weight. Dad had the same problem.)diverticulitis, and had to have a partial hysterectomy to stop the bleeding. I am blessed that my bones and teeth are excellent, and I still have a good head of hair. I just had my thyroid removed Sept 22, ’11, tumor the size of my fist. I was told that I have a 1-in-5 minimum chance of having a first-degree relative with the disease; so far, my brother and sons are symptom-free. All of my weight is in my belly, and I thank God for spandex jeans.
This is so thought provoking– I have much to ponder before I answer. Thanks!
Thank you both for your comments. Celiac Disease is expressed, seen and thought about in so many different ways. It would be interesting to see if there is some connection to how americans view it due to our body Image. Carly, Please comment if you come up with anything. I would love to hear it 🙂
Definately thought provoking. I must admit I looked my best in jeans when I was suffering from symptoms of Celiac, having lost a lot of weight in a very short period of time, but I was ALWAYS pursuing a reason (diagnosis) for why I was feel…ing unwell. I may have looked slimmer, but I didn’t want to get off the couch! Yes, in America “slim is in”, but I just can’t imagine someone delaying their diagnosis to remain thin.But then I can’t imagine putting my fingers down my throat to you know what …Interesting study Georgia!
I’m of irish and english descent and a number of autoimmune diseases are common in my family however I’ve been the only one diagnosed as a celiac. My whole life I’ve had a bmi that is considered to be underweight. I neverthought anything of it since alot of my relatives are also tall and thin. I got to be so skinny that people assumed I had an eating disorder. When I hit puberty thats when I started to develop GI symptoms such as lactose intolerance. I went undiagnosed for about 7 years after this. When we finally figured out gluten was my problem I began the gf diet. After only a year of being gf I have grown two inches, my bmi is now considered normal, my dermatitis is gone and my hair is thicker. People have noticed and told me I now look healthy skinny instead of scary skinny. There are still people though that I encounter that think my eating habits and being thin are attributed to an eating disorder which can be extremely offensive considering how frustrating being a celiac is already.
I’m shocked to read that some of you were pleased with your look/size pre diagnosis. Aside from feeling like I was on death’s door with the fatigue, cramping and headaches, the bloating, hair loss, dark circles under my eyes, and facial puffiness didn’t do anything to boost my self confidence just because I was skinny. There is a massive difference between being ill/emaciated and having a healthy smaller figure, and it is obvious when looking back at photos of myself before I started the gluten free diet. I may have been a size 2, but I looked sick, not attractive. I agree with Paula in that I also cannot imagine delaying diagnosis or treatment just to stay thin.
There is no denying that body image issues are prevalent in American culture, but I’m willing to bet that the percentage of healthy (non-celiac) teens who use unhealthy methods to regulate body weight (anorexia/bulimia) is equivalent to the percentage of celiac teenagers that use their disease to keep the weight off, which suggests the problems are mental health issues that are in no way exclusive to celiacs.
Thank you everyone for your comments, it is interesting to see the different perspectives people have on this. I did a follow up post that goes into my story in a bit more detail. I would be interested in seeing what you all have to say about my other post (http://celtic-celiac.blogspot.com/2011/11/body-image-and-celiac-disease-part-two.html) I’ll be likely doing one more post in this series after that.
esargent, I would definitely agree with what you said and I think that the culture plays a big role in making celiacs and non celiacs use methods to keep their weight down. I think because I was in college, and had rarely been complimented on my looks prior to becoming ill, I let things go a bit to far (two-three months rather than a few weeks, although I didn’t get an accurate dx for another 3 years)before seeking assistance. I think that probably happens to many people who are diagnosed in that age range if they lack a strong degree of self confidence, not necessarily mental illness… although I can see it going down that path.
Also, let me just add: as the second post in this series mentions, my first symptom for the first few months was a rapid weight loss. I didn’t start experiencing the other symptoms until a few weeks after that, so I think this contributed to my delay. Once things got real bad I was immediately at the doctor, who told me it was psychosomatic… but that’s for an entirely different story.
I was recently diagnosed with Celiac disease in the middle of June of 2012. When I got the diagnosis I was dumbstruck. On one hand I knew that bread made me uncomfortable when I ate it and now it made sense to me. I had been on the Atkins diet for 3 years only eating bread products when it was a special occasion. In about March of 2010, my son said I looked too skinny and that Atkins was a quack. But I digress, I FELT better when I did not eat any gluten based products. So I gave in and went off the diet and added more and more wheat. I would tell people that my guts were in knots when I would ingest it. One day I went to my regular doctor because I had a mole that turned black overnight. Well, he ordered blood work. Come to find out my ferritin levels were almost nonexistent. He sent me to a gastro doc who did a colonoscopy and an endoscopy. A flat biopsy he said strongly suggested Celiac disease. I was shocked! Me–I’m healthy because I eat whole grains!!! I have been on the diet for 3 months now and do feel better physically. But, again I digress, I now have to be paranoid of cross contamination. Makes it hard to socialize with folks. I feel like a freak of nature—not only that but I have to fight to keep my weight in balance. Women are hard wired and socialized that they need to look good to be valued. I am older–57. It’s late in life to get this. I don’t want to gain weight, in fact have lost some and have to work so hard to keep it at 137 lbs on my 5 ft. 6 in. frame. Yeah, it really works on my already negative body images. I am glad, however that I know that I was right about feeling not so hot when I ate gluten items. Doctors like to tell women that they are making this stuff up. The hell you say!! I hate going to the doctor because they are scumbags and the harbingers of death. I really prefer to stay away.
Thank you for your comment. I am glad that you got a diagnosis and are working towards getting healthier. It is so tough to ignore the societal influence that stresses the need to be skinny, especially when you have a digestive disorder. Stay at it. It it tough in the start, especially when you feel like your self esteem has been shot, but eventually the need to be ‘picky’ and ‘demanding’ in regards to cross contamination becomes second nature. Try checking out the Gluten Free Bible for some helpful tips.
I went ahead and ordered the book you recommended. I am also considering starting a face to face support group. It will be a challenge of course. It’s funny, a guy at work said to me that he got a premonition that I am going to be a great leader—I know and told him he was full of you know what. Maybe this is a start. Great blog by the way.
Sounds like you are doing your best, good luck!