A lot of people newly diagnosed with celiac disease, some that have had it a long time, and those without celiac don’t understand the good and the bad parts of the disease. Yes, there are actually good parts! So, let’s talk about the realities.
Food is no longer a comfort for most of those with celiac. Food is a source of illness if we aren’t exceptionally careful. 1/64th of a piece of bread will make someone with celiac disease sick. And since gluten is in a lot of foods and even places you wouldn’t think it is exceptionally difficult to maintain a gluten free diet.
Food is our medicine. Eating whole foods is really a healthy way to eat. We can’t have all of the processed junk that comprises much of the standard American diet which is great for our bodies. We also are more conscious of what we put in our bodies because we have to carefully think about every single bite.
Eating outside our homes. Restaurants, other people’s homes, and parties are anxiety inducing nightmares. Most people don’t understand what is gluten free and how to do it correctly. They think they bought gluten free pasta and that’s great. Then they cooked it in the same water that the regular pasta was cooked in causing us a great deal of pain. People are trying to help, but they just don’t understand all of the precautions we have to take to eat safely.
But eating outside our homes can be a blessing in that we don’t have to eat Grandma’s fruit cake, or Aunt Gerdie’s wilted salad. At potlucks, we can say that we brought something for everyone but couldn’t possibly eat because we are so full while avoiding Susie Lou’s mushroom, olive, and liver pate. We can avoid all of the disgusting options at the potluck!
We can spend a ton of money on groceries. A gluten free loaf of bread costs twice as much and is half the size of a regular loaf of bread. Also, gluten free bread isn’t awesome. Don’t even get me started on gluten free cookies or crackers – again, twice the price and half the size.
We can also save a lot of money on groceries. We shop around the perimeter of the store because that is where the whole foods are. Whole foods are much cheaper and you get a bigger bang for your buck. Today, I bought two giant tomatoes instead of a bag of Oreo’s (for the gluten eaters in my house) for about $5. The two tomatoes will be a topping for tacos, tomato sandwiches for lunch tomorrow for my kids, and made into a salad with mozzarella cheese and basil for my lunch tomorrow. So, see, my tomatoes got me three partial meals, while the Oreo’s would only make me fatter.
We are more willing to stand up for ourselves or our children with the disease. We are more assertive when ordering at a restaurant. Our children and friends see us advocating for ourselves rather than being a victim to this disease.
Don’t get me wrong – there are lots of things about celiac disease that stink. As someone wise said today, we can’t live in the sucky part of celiac. People aren’t always going to be kind. People aren’t always going to say the right things. People are going to make fun of us because we have to eat differently. But the question is, how do you handle it? And its okay to be angry and sad about living with this disease. But over time, and for me it took a long time, you just get over it. This is your life.
It is no different than people bearing other burdens we know nothing about. Maybe someone at the office cracked a joke about thinning hair to someone that is suffering from alopecia. It probably hurt their feelings too and without even knowing it.
Celiac disease is an up front disease. More often than not, family events, celebrations, and religious ceremonies all involve food in some way shape or another. It is tiring to have to always explain why you can’t eat. But with a little humor, grace, and kindness we can get through this.
Let’s try some role playing…..
When someone says, “Oh, my sister’s cousin’s friend has celiac and they eat gluten.” Our answer could be, “Awesome” and turn and walk away. Or “Awesome, I hope they don’t die of celiac cancer.” Or, “Thanks, I wish them well, but I can’t eat gluten. It makes me too sick.”
When someone says, “I’d die without gluten.” Our answer could be, “I’m living proof you won’t.” Or the snarkiest of answers, “Maybe you should try.”
When someone says, “Do you want to go to this gluten filled with no celiac options restaurant with us?” Our answer could be, “I love that place! We had dinner there last night, could we try ___________ (with a celiac safe menu).”
When someone says, “Oh a little bit of gluten won’t hurt.” Our answer could be, “Maybe it will, maybe it won’t. I’m not willing to take the chance on my health.” If they get insistent, a snarky answer could be, “Awesome, I’ll meet you in the bathroom in 20 minutes for the vomiting to start, then we will spend the next 5-6 hours on the toilet with diarrhea. I look forward to spending time with you.” No, not really, don’t say that. Maybe try, “My health feels better than that gluten tastes.”
Or when a fellow celiac says that they just can’t do the diet anymore, “I’m sorry. I know eating gluten free is really hard. Can I give you a great simple recipe to try? My family loves it and follow Fat Celiac on Facebook, Twitter, or Instagram because she gives really good pep talks!”
Or when a fellow celiac says, “Gluten free is expensive.” The answer could be “I’m sorry. I know eating gluten free is really hard. I’ve got a couple of cheap recipes I could give you. My family loves it and follow Fat Celiac on Facebook, Twitter, or Instagram because she gives really good pep talks!”
So, my point to this article is to suggest that we look at this awful, terrible, no good, very bad disease in a different way. Hopefully with the cup half full rather than the cup half empty.