Celiac disease is an inherited autoimmune disease. It’s not a fad, it’s not a diet and to people with serious cases of celiac disease, it’s not a joke.
Things To Know About Celiac Disease
It can be tempting to keep things positive all the time, but living with a lifelong disease isn’t always fun. If can feel even worse when people dismiss and minimize your struggles. Even some doctors seem to treat celiac disease like its just a diet choice. Other people living with celiac disease may not have any symptoms so our own community can feel alienating too.
It’s important to find some place where you can relate, feel safe and get some support. Sometimes not feeling alone is enough.
People Can Experience the Disease Very Differently
The symptoms of celiac disease can vary wildly from person to person. Some people have no symptoms at all. You may occasionally see these people leave comments about how celiac disease is no big deal and hasn’t changed their life at all.
This is one reason why you can’t judge which restaurants are safe based on who got sick there. People saying “The donuts at Krispy Kreme are gluten free, I ate them and didn’t get sick!” doesn’t help a celiac who is trying to eat a truly gluten free diet.
Other people can have extremely severe symptoms that require hospitalization. They can also develop other food allergies that limit their gluten free diet even more and cause a celiac like response to allergens. Celiac disease can commonly lead to other autoimmune diseases, chronic pain and cause a significant decrease in overall quality of life. For these people celiac disease can be a very big deal.
A Gluten Free Diet is Currently the Only Treatment
Because celiac disease is an autoimmune disease where the trigger is known, the treatment is to remove the trigger; gluten. Unfortunately, in the USA, ingredients in food aren’t always clearly labeled so gluten can be a hidden ingredient. It can be used as fillers, in anti-clumping agents, in natural flavors and as anti-caking powders. Most of these aren’t even labeled on the food ingredients list.
Many People Don’t Comply with the Treatment
Celiacs have to worry about cross contact with gluten in parts per million. It’s a big deal and a big problem. It’s also the reason they can’t walk in any restaurant and just order off the gluten free section of the menu. Cross contact makes eating out a risk and a hassle that often involves interrogating waiters and the chef. Food is the centerpiece of holidays, events and socializing which is a big reason many celiacs don’t always comply with the diet.
Just like every other disease there are people who follow treatment and others who don’t. However, doctors don’t have a reputation for giving celiac patients good education or follow up care, so it’s no surprise many people don’t follow the diet correctly.
Not Everyone Tells the Truth
Why is this important? You may have a friend with celiac disease who eats out all the time. They say eating a little bit of gluten is no big deal and desserts are ok to eat, as long as it’s only on weekends. Obviously, this is ridiculous. Try to remember that random people may not be telling the truth about celiac disease.
It can be easier to say “It’s ok for a celiac to eat this” instead of “I’m going to eat gluten right now, even though I’m not supposed to.” Celiacs aren’t saints.
- Every disease has people who don’t follow the recommended treatment.
- Celiac disease has a high treatment burden for patients and their loved ones.
What Can You Do For Your Loved One With Celiac Disease?
What you can do is find a dedicated gluten free eatery and invite a celiac out to eat! There may not be many options nearby, but finding a bakery, restaurant, food truck, diner, etc. that is completely gluten free and celiac safe is an awesome gift.
Being willing to drive the extra distance so your celiac friend can relax, order anything on the menu (instead of one or two items) and eat their food without the fear of getting sick, is something you can do to show you care.
It might not seem like a big deal to you, but for some celiacs, dedicated gluten free restaurants are a reminder of what life was like before getting diagnosed with celiac disease.
I drive over an hour to get to a great dedicated restaurant near me and it’s a special occasion for me. I only have one person who usually goes with me because I don’t want to ask other loved ones to make the trip. I know they would if I ask, but I also know it’s a hassle. Fyi I order food to go and take it home to eat the rest of the week too. It makes the drive worth it!