Over the past several weeks I have experienced not-so-celiac-safe situations by coworkers and friends who are honestly trying to give me gluten free options. Although I REALLY appreciate the thoughtfulness, it is difficult and frustrating when options aren’t actually safe and the gluten eater is confused/upset/annoyed/sad. So as a method of personal therapy (for me) and (hopefully) a helpful note to gluten eaters who care about those with celiac, I decided to interrupt my usual restaurant reviews to write a “letter.” Here it goes…
Dear Gluten Eater who I care about so very much,
I appreciate the effort you made to include me in a food related event. Trust me, I really do. As always, I emphasize that I am more than happy to bring my own food, but I am honored that you went out of your way for me. However, I wanted to explain why I cannot eat what was provided.
- Celiac requires gluten free. I have celiac disease (or coeliac disease if you are from Europe), which is a rare autoimmune disease. This means I cannot eat gluten (rye, malt, barley, oats, wheat, etc).Gluten free is not a choice for me. I cannot “cheat” or else I end up in the bathroom for hours on end getting sick from both ends (sorry for imagery!) until I wind up in ER from dehydration. I get migraines and extreme fatigue as well that lasts for days. I am not trying to be picky, I promise. But I have to eat gluten free. “A little” gluten is not gluten free.
- Exhibit A: An acquaintance came up to me after seeing me eat my Enjoy Life gluten free cookies (delicious by the way) and when I mentioned that I have celiac, he said “well doesn’t everyone think they have that? One study came out that showed that gluten free is usually made up in their head. You don’t really have to eat gluten free.” My jaw dropped and my anger rose. I managed to explain what celiac was and explained that I had an endoscopy that confirmed I have celiac and that I have to eat gluten free. I proceeded to describe in excruciating detail what happens if I get cross contaminated…..This is what I mean. Gluten free is not a choice (trust me I LOVE gluten but it hates me). Please do not question whether or not I really have to be gluten free. It’s hard enough to be different in every food situation but to have my medical condition question, just stop.
- Celiac is an autoimmune disease but when it comes to food preparation, please treat it as a food allergy. I will get sick from the smallest amount of cross contamination. No, you cannot put my toast in your toaster. No, if you grab a gluten containing cookie and then touch mine, I will NOT eat it. I have gone to multiple events where “gluten free options will be served” to only find cheese on the same platter as the wheat crackers. My word of advice: think of it as a peanut allergy (since people understand those more; note that these two conditions are not comparable–my throat will not close up BUT the protocol for handling the food should be similar). Would you offer someone with a nut allergy a chocolate chip cookie that was touching a peanut butter cookie? Would you use the same knife to spread butter on their bread that just touched peanut butter? No. Can I person with a nut allergy pick around the nuts? No. Celiac means clean surfaces, clean utensils, and lots and lots of hand washing. Gluten to celiac is like a poison.
- Exhibit B: Today my coworkers picked up cupcakes from a bakery that also has gluten fee cupcakes. I am very familiar with this bakery and their gluten free protocol and am very very happy with their knowledge of celiac. However, the person that placed the order did not specify that the gluten free cupcakes were for someone with an allergy….so the gluten free cupcakes ended up in the same box, touching all of the gluten-filled cupcakes. I could not eat them and the person who ordered them honestly appeared hurt. I was met with “But maybe they didn’t touch too much?” and “Really? Just them touching is a problem?” I explained several times what celiac is and how I cannot eat ANY gluten. I became the center of attention and just wanted to continue with my day without defending my inability to eat the cupcakes.
- Gluten free does not mean celiac-safe. Please be understanding when I ask a thousand questions regarding how the food was made and the ingredients that I am just ensuring my safety. When I wind up eating a salad even though there are “gluten free options” at a restaurant, understand that gluten free is often thrown around…and I can’t always trust the restaurant to be safe. This goes for pre-packaged foods as well. For instance, gluten free is stamped on Cheerio’s boxes…but some boxes contain higher amounts of gluten and I, for one, will not risk it. Many times I have to e-mail and call companies to determine whether or not the food item was processed in a celiac-safe manner.
- Exhibit C: There is a second bakery in my town that offers “gluten free.” However, they use all the same equipment, utensils, surfaces, etc. Screams cross contamination. I cannot eat here. Even though they advertise gluten free, if you used the Nima sensor, I can guarantee that you would get a sad face (AKA gluten detected). I have had friends get me cupcakes from here and I hand them off (and then thoroughly scrub my hands) to a gluten eating friend.
- Gluten has many many names and is rarely listed as just “gluten.” It can be quite confusing to determine what is gluten free. Gluten has many fun names….malt, malt flavoring, barley, even some artificial colors/flavors! I have nearly been glutened by butterscotch candies because they contain malt. Please do not assume that because something doesn’t have wheat listed in it that it is gluten free. And please please please be understanding when I am skeptical of the status of gluten free and spend time reading labels before eating the food.
- It is nothing against you when I can’t eat your food. My kitchen is a gluten free one (aside from one lonely cabinet where Ryan stashes his Biscoff spread). I know how my utensils have been washed. Gluten has never touched my baking sheets or hand mixer. My toaster only knows gluten free toast. But I don’t know about your kitchen….often people will use the same scooper for sugar as flour, contaminating the sugar. Have you ever use the same utensil for different spreads? Have you ever buttered your toast with butter and then used the same knife to add more? It is tricky and I don’t mean to make you change–you don’t need to! But when I graciously decline a home cooked meal, do not take offense.
- Exhibit E: A coworker made me gluten free cookies. I graciously thanked her but then gave them to my boyfriend. I didn’t have the heart to tell her that I have no idea if they are truly gluten free. Did she line the cookie tray with aluminum foil? Did she put the cookies with gluten ones on the same sheet? Did she use the same spatula? Did she use Pam baking spray (which contains gluten)? I felt so touched that she went out of her way on her birthday to make me something…and felt worse that I couldn’t eat it.
If you want to get me something to eat (which you do not need to do), it is probably best not to prepare it in your own gluten-kitchen. There are only a few people I trust completely with my health (my boyfriend, my roommate from college, my best friend who happens to have a medical condition requiring gluten free, my mom, and my boyfriend’s mom) and this is because they lived through the diagnosis with me. Otherwise, I am really not offended…in fact I am overjoyed…if you pick up pre-packaged gluten free goodies for me from a gluten free company like Enjoy Life or Glutino. I promise I would be ecstatic to have a safe option. My friends have done this multiple times—when my friend had her birthday party, she bought me cookies and kept them separate from everything else.
Remember that every celiac is different—and what may be safe for me is not safe for someone else. There are some celiacs who cannot tolerate standard gluten free and there are some others who are asymptomatic and tolerate higher levels (my friend from college for instance). Hence, there is no gold standard for what is “safe.” Please reach out to me if you have any questions or confusions—I won’t be mad and I won’t “spoil the surprise”–truthfully, your surprise will end up being passed off to someone else if I can’t confirm that it is safe.
Thank you for bearing with an ever-hungry celiac and trying to help and accommodate me. I wanted to explain why at times I can appear distant and don’t gobble up all of your homemade gluten free goodness. I am not trying to be picky or a drama queen. I am trying to stay healthy. ❤
With (gluten free) love, Gluten Free & Glittery.