I rarely discuss personal stories of when I was diagnosed, due to the belief that I should choose to remember the happier times in my life, rather than dwell on the depressing incidents that have happened to me. Today is a rare exception due to an article by Meghan Casserly posted on Forbes. This is a subject that is very near and dear to my heart and I thought it would be fitting to speak out on this topic.
Dear Meghan Casserly,
Words cannot express how deeply disappointed and depressed I became after reading this article you wrote for the Forbes blog. I was diagnosed with celiac disease 9 years ago, before the “gluten-free boom” occurred, when little educational information and food alternatives were available to patients. I did not live in an area with access to experts on celiac disease and was left to fend for myself in terms of patient education.
At the time of my diagnosis I was very ill, I had lost over 60 pounds in an eight month period and would barely eat because every time I ate a meal, the pain in my intestines was unbearable. I went from being a healthy individual who loved trying new foods and eating out every chance I could get, to someone who was under 100 pounds, had no energy, with severe intestinal pain, and would drink large amounts of water to try and help subside my symptoms of a condition I had no clue that existed.
Oh, and I forgot to mention I was 17 and a sophomore in high school.
Sound familiar? Because it should. I was living all of the symptoms of the girls mentioned in your article, and I did not appreciate, or take kindly to being accused of being an anorexic by both my peers or my instructors in high school. If my parents had not believed me, I could have very easily been treated for an “eating disorder”, however I was lucky and was eventually diagnosed.
Attaining a diagnosis did not stop the harassment and accusations of an eating disorder, in fact it just made it worse. I distinctly remember one Agriculture Education teacher telling me that I just made up celiac disease to cover up the fact I did not eat because there was no way anything could be wrong with me. This and many other incidents caused me to seep into a deep depression which caused a range of irrational thoughts of suicide, to a lack of self confidence throughout the remainder of my high school experience that I tried to cover up and hide from my peers, because the weaker I appeared to others, the more I was harassed or talked about behind my back.
In the comment section you state:
@Jules: My intention is not at all to draw attention away from those who truly do suffer from celiac disease or gluten intolerance, only to shed light–and raise eyebrows–on another potentially dangerous and possibly overlooked possibility.
If this had actually been your intention, a better way of stating this in your article would be to encourage young girls who are having a rough time adjusting to the gluten-free diet to see dietitians for appropriate patient education and encouragement of the transition process to a gluten-free diet.
Instead you have chosen to make life a living nightmare for certain young girls by making the accusation that young women who follow the gluten-free diet that fit the descriptors you provided are highly likely to be lying and just have an eating disorder, even if the parents state they have been diagnosed. Congratulations, you have done a fantastic job at this.
My only hope is that if you actually read this letter, or the hundreds of others that will be pouring in your inbox, that you make changes to the tone and add additional information on how important patient education of young teen girls is to your article. Yes, some young girls do use food intolerance as a cover up for eating disorders. However, by encouraging readers to seek out help from a dietitian, they can make a professional assessment as to whether or not the young girl has a problem, rather than just make a blanket argument of accusation that you have done in your article.
As for your statement,
What’s left to eat?
Next to nothing. And for many, that’s exactly the point.
I will let the rest of the gluten-free world correct you on this, because trust me, they will.