Volume 1: Issue 1
By Eloise, age 13, MI
Helplessness is one of the worst possible feelings. Knowing something is amiss but having no ability to act upon it leaves you feeling powerless. I first experienced the full weight of this feeling around a year ago.
My family and I were at my grandparent’s house in Wisconsin. They were hosting a party for friends and relatives from all over the country in honor of their 25th anniversary. It was at that party that I was served a gluten-containing grilled cheese sandwich. I have celiac disease, an autoimmune condition. Anytime I ingest gluten (a protein found in wheat, barley, rye, and on occasion contaminated oats, the villi lining my small intestine die, and I become violently sick. After eating the grilled cheese, I spent the whole night vomiting profusely, too exhausted to even lift my head from the pillow.
Eating dinner the following day, I had only begun to feel like myself again. Suddenly a shout rose from the kitchen, “Don’t eat the bread! Don’t eat the bread!” The table froze as these words were spoken. I looked down and knew exactly what had happened. For the second day in a row, the bread I had just eaten was wheat bread. As soon as I registered what had happened, all my senses were amplified. I felt so much in so little time. I could smell the remaining food in the kitchen that had yet to be brought out. I could feel the tablecloth beneath my fingers in a different way, but most of all, it was my emotions that had spiked. I was already so drained of all my energy from the torturous night before, I didn’t know what to do or feel. But sitting there, at that table, I told myself there was a decision to be made. I could freak myself out by imagining worst possible outcomes. This would mean getting worked up for the next four hours until the gluten reached my small intestine when I would begin to experience symptoms. Or I could calmly accept the facts and come up with a solution to deal with them. I chose the latter.
I stood up from the table and feeling as helpless as I have ever felt before, went to fetch the necessities for the night to come. Because we caught the mistake early, my mother went to a local pharmacy to get activated charcoal. The charcoal soaks up anything and everything within the stomach. That prevents the small intestine from recognizing the harmful gluten. We had never used it before, as we had never had any reason to, so I didn’t know what the results were going to be.
I sat in bed watching a movie that I can’t remember anything about, knowing that I never wanted to feel this way again. Helpless. Having done everything we could, I fell asleep, expecting to be woken later by the exhausting symptoms, but they never came. Because my grandmother caught the mistake regarding food, my mom got the activated charcoal so quickly, and I had chosen to stay calm, I didn’t get sick. Although I was physically all right, I will always remember the helplessness that first washed over me when I was told I had unknowingly eaten gluten. So when I feel utterly helpless, I remember that there will always be some way to help, even if it’s not what I might have imagined. Sometimes, the best thing we can do is to stay calm and collected.
I know that managing celiac disease can be so frustrating and even a little scary. It is hard to avoid food that contains gluten, and it seems to hide everywhere! I bet it’s especially difficult to get your friends and family to understand your diet and how bad ingesting gluten can make you feel. And, no one likes the feeling of being sick, that’s for sure! When I work with celiac kids, I encourage them to create a celiac toolbox, a little kit that can help make it easier to manage. I have them fill it with recipes, food substitute ideas, safe brand names, and any handouts that I give them. But, I think that you found the best tool of al—POWER! You managed to dig deep and find your inner strength. You took a really scary situation where you felt helpless and found a solution while maintaining a positive attitude. Your knowledge, courage, and strength became your Power Tool, and you now can handle anything. Way to go, Eloise! I think that you are one tough cookie (gluten-free, of course!).
—Jen Ranalli, RDN, LDN, CSP, pediatric dietitian, Philadelphia, PA
Thank you for sharing your story with the world. I was diagnosed with Celiac Disease 29 years ago; a time when the doctors didn’t know anything about the disease. My symptoms were severe, so they tested me for multiple things before a doctor saved my life in suggesting that it could be Celiac. Fast-forward to today, I am still having issues with accidental contamination.
I’m currently in quarantine in Sydney (Australia) and had a meal delivered to me today that I didn’t think twice about eating given the nature of their deliveries all week. However, I was contaminated, and I discovered that I had been after I consumed the whole meal, and only because I received a knock on the door for the gluten free meal (delivered 30 minutes after). Huge mistake on the hotel’s part.
I am writing all of this to THANK YOU. After I found out I was contaminated, I remembered reading your story and the suggestion of using activated charcoal to help minimize symptoms. My husband was able to order tablets and as a result, I’m already feeling better (which is not typical under these circumstances). You are so brave for sharing your story and experiences. I know the pain of having to deal with Celiac and the constant fear that comes with eating, a simple necessity that many don’t think twice about.
Continue to be strong and to demonstrate wisdom. As I share all of this, I am looking into a service dog. There are service dogs that can sniff gluten, and if there is one thing I wish I had all growing up (and especially in the last 24 hours), it would be the reassurance that the food I eat is safe for me…because my life depends on it, just like you.