I don’t usually get very wordy, or even very personal on this blog. My goal with this blog has always been to help people eat well, and have fun doing it, while adhering to their gluten-free diet. We all know its not exactly “fun” to be on this diet. We do it because we have to.
But today there was an article in Forbes magazine that has the gluten-free community up in arms. Meghan Casserly’s article is unfactual and poorly written at best, rude and even dangerous, at worst. Its basic notion is that people on a gluten-free diet might be masking anorexia. While there is one anecdotal case that Meghan points to as the reason for publishing this statement, there is no empirical data to back this up. And trying to make this linkage is dangerous.
She says that its a “scant” 1% of the population affected by celiac disease (so its not important?). She says that the gluten-free lifestyle is on the rise, and says this is surprising because its highly restrictive, and that there is nothing to eat on the gluten-free diet. This is absolutely wrong. The only thing you can’t eat on a gluten-free diet is gluten. Of course gluten can find its way into many things. But once you know how to work around this, there is so much to eat. People should not be led to believe otherwise.
She drops the names of several celebrities who either have celiac disease, gluten-intolerance, or a child with autism, and alludes to the idea that because these celebrities support the gluten-free diet, that “gluten-free” must be a fad. She does not dig deep into the reasons why the gluten-free lifestyle is on the rise. It is not a fad. Four times as many people today have celiac disease than did 50 years ago. This is not an increase in diagnoses. This comes from comparing DNA to a control population today, vs. frozen DNA from a population in the same geographic area, 50 years ago. The prevalence of the disease has increased. Moreover, there is another group of gluten-intolerant people, Non-Celiac Gluten Intolerants (NCGI) who do not have the DNA markers of celiac disease but exhibit many of the same symptoms and who react severely to gluten. Doctors estimate that between 6% and 15% of the world’s population have NCGI. This is not a “scant” number.
I don’t know what the true story of those three teenage cheerleaders was. But it could be probable that at least one of them has a problem with gluten, and because teenagers fall easily into peer dynamics (there’s safety in numbers), then its not all that surprising that the others could have felt issues with gluten, whether real, or imagined.
It is a well known fact that many teenagers suffer from low self-esteem and bouts of depression. Many are afraid to ask for help that they may need, for fear of being ridiculed. It is also well known that diagnosing celiac disease is very difficult, and people have gone as much as 20 years or more before being properly diagnosed. Gone undiagnosed, celiac disease has life-threatening consequences. Making an un-tested link between anorexia and a gluten-free diet, and sensationalizing it with an inflammatory headline is the real danger. How many young teenagers experiencing real issues with gluten, will now have their peers, teachers and even parents believe that they are just crying out for attention, or trying to mask an eating disorder?
Already, teenagers with celiac disease are meeting with ridicule because of their condition. I met one mother on Twitter whose daughter was mocked for needing to stop for a (gluten-free) salad after the team had a pizza party. The other girls on the school bus teased her and called her “special”, making her cry. When I was in high school, I tried “dieting” because I always had a bloated abdomen, and thought dieting would make the bulge go away. I once got reprimanded by the school nurse for only eating a grapefruit before school. She alerted my parents to my “diet” and forever my parents thought my food intolerances were “all in my head.” For 20 years, my issues went unresolved, and undiagnosed.
The general public should not be told of possible dangers of the gluten-free lifestyle. They should be told of the dangers of not diagnosing it. And teenagers should not be given another reason to ridicule their peers. Or worse, teenagers experiencing real problems should not be given another reason not to seek help for them.
Meghan claims that she was trying to “shed light–and raise eyebrows–on another potentially dangerous and possibly overlooked possibility” (e.g., anorexia). But if she were truly trying to do this, she might have highlighted some of the underlying issues that surround anorexia, including its signs and symptoms, its dangers and what people are doing to try to cure it. I believe this article was written as a sensationalistic stunt, in the hopes of getting a lot of attention, but not in the hopes of actually helping people with anorexia, a disease with a 20% fatality rate. (I’m no reporter or blogger working for a big name company, but I can google pretty well, and that’s how I know this fact).
She also goes on to make fun of someone because of her weight and her diet, and insinuates that because this person is gluten- and lactose-intolerant, that she probably doesn’t have anything interesting to say. How tacky! (By the way, I’m gluten- and lactose- intolerant, and my friends think I have plenty of interesting things to say!). If she were concerned about anorexia, she would realize that self-esteem and body image are attached the disease, and would not be passing judgement on her “friend of a friend” because she is 100 lbs (did she know her weight for a fact?).
Meghan’s article is full of holes, its smug & its insulting. Its also dangerous to girls with anorexia, and girls with gluten-intolerance alike. The article has done nothing to help shed light on either of the two diseases, but instead makes a mockery of all people suffering from either disease.
My digestive issues started probably as far back as I can remember. They probably started before high school (but my memory doesn’t go back that far so much anymore)! I do remember in high school thinking and feeling that “I am fat”, all the time. Of course many a high school girl has been known to think this or say this, so its not anything new. But I thought I was fat, because my tummy was always bloated. I went on a diet to try to lose that tummy bulge, and one day went to school having only eaten a grapefruit for breakfast. First bell was PE (gym) and as we were running around the track, I passed out. I was sent to the school nurse, who found out that the cause of my low blood sugar was that I ate nothing for breakfast. See, grapefruit actually has negative calories in it – it takes more calories to consume it, than there are in it – which is why its such a popular diet food. Anyway, I was given some saltines, and sent on my way. But the nurse called my parents to alert them of my “diet” and this opened the door to suspicion and skepticism about my food issues, for the next ten or more years.
I was not anorexic, and I did not even have a strict diet. I wouldn’t even say that I had a poor self-image. I was just a young high school girl with constant bloating in my stomach, and often real pain, trying to figure out how to heal myself. My parents didn’t believe that I had any issues. In addition, I was often the brunt of cruel “dumb blonde” jokes, because I was “airheaded” – a side effect (“brain fog”), that I only recently learned, of gluten intolerance.
In college one evening I was studying for a final exam but the pains in my lower gut were so terribly bad, that I was not able to concentrate on my studies. I’ve always been very disciplined and would never find an excuse for not studying. But the pain was unbearable, and I had to put the book away. I don’t remember what happened with that exam. But I do remember those pains.
My father believed it to be from stress. But I told him this was no ordinary stress. Something was wrong. So I went to one of the best medical doctors at the University of Virginia (where I was studying). He was an apparent expert on gastrointestinal diseases, and he performed a colonoscopy on me. This was about 20 years ago, now. His diagnosis? I was fine. There was nothing wrong. The secret conversation that took place between him and my father (who was footing the bill) was that “it was all in my head.”
I have been plagued with this diagnosis for nearly 20 years. I spent the rest of my college life in a constant “brain fog”, as well as continual “psychosomatic” (not!) gastro-intesiiinal pain and bloating.
Another ten years passed between the time that I saw that GI expert, and the time I visited another GI doctor. I finally learned that gluten was the cause of all my trouble. How I figured that out is a story for another time. But I went to this new GI doctor, in the hopes that in 10 years, doctors had more advanced ways of determining the mysterious bloating and pain in my gut. And just in case they didn’t, I offered to the doctor my gut feeling, that “I think that I have a problem with gluten.”
The doctor looked at me squarely, waved her hand (waiving my self-diagnosis ridiculous) and said: “You don’t have a problem with gluten. Why do you think this?” And I explained the very obvious, that when I eat it, I get sick! She laughed, did not order any tests, and asked me if I wanted an antibiotic. I left the doctor’s office in tears, thinking once again, that I must be crazy. I went out for a beer and some pizza with my (now) husband. And I got sick. Very very sick. And I knew I was right. In the end, we know our bodies, better than any doctor. And so I went with my “gut” feeling, and have been much happier ever since.
