Celiac disease is different than other illnesses in the fact that those of us living with it don’t just take a pill and then go about our lives. I’m grateful that I don’t have to take harsh medications for celiac and that food is my medicine, but that also requires additional planning and brings other challenges.
I get emails everyday from those newly diagnosed asking questions and seeking advice. The most common question I get is “how do I get my family and friends to understand what I’m going through with celiac and for them to realize how my life has changed?”. This is hard. It’s hard on you and it’s hard on them (even if they’re not showing it).
The fact that most doctors aren’t even properly educated on celiac says a lot. My advice is always to be open with your loved ones. Let them in on how you’re feeling, both physically and emotionally. Also, show them grace. I know it’s harder on you, but this is also new for them and challenging as well (especially for those that live with you). It’s important to remember that most people aren’t hurtful intentionally. Most times people say things or act in certain ways because they don’t know better. This is your chance to educate them. By educating those around you, it will help them understand what you’re going through and allow them to support you.
Celiac has affected all my relationships. Some people in my life wanted to learn everything about it and have helped me tremendously through encouraging me and just standing beside me in this journey. I have the most supportive husband and family. Erik chooses to eat gluten free at home, so our entire house is gluten free. Also, my parents have their house gluten free just so I can eat freely when I’m there (how amazing is that?!). On the other hand, it hurts to say that I’ve lost some relationships due to it.
I’ve had celiac for many years, so everyone in my life is supportive now. However, at first it wasn’t always that way. If I could go back to the early days, I’d be more open and let those close to me know what I was going through and how I was feeling.
Things I Wish My Family and Friends Knew About My Celiac Disease…
- I want to be included even though I can’t eat where you pick. It sadness me to say celiac has negatively affected some of my relationships and some people have even stopped inviting me places. Now I know I don’t need those people in my life, but it still hurts. Going out to eat isn’t about the food to me, it’s about the social aspect.
- I’m not doing this as a fad or diet. I understand eating gluten free is “trendy” now, but that’s not why I do it. Celiac is a serious autoimmune disease and a lifelong strict gluten free diet is currently the only treatment.
- This is a lot harder than it may seem. Gluten is not only in food…it’s in everything from cosmetics to medication. Any time something can go near my mouth I have to research to see if it has gluten. This means reading labels and contacting manufacturers, which sometimes is challenging and gets frustrating. Everything from planning a dinner date, attending parties to traveling takes extra planning. I do it because I have to but sometimes I don’t want to. It takes the spontaneity out of life and I really hate it.
- No, I’m not going to take just one bite. I know you say it because you’re unaware of the severity, but yes one bite is a big deal and please don’t pressure to eat something I’m uncomfortable with.
- Cross-contamination is real. I can get sick if I use your toaster that has had regular bread in it, if you cut my food with a knife that has touched gluten or if I kiss my husband after he eats gluten or drinks beer. The FDA says a product has to be less than 20 parts per million to be considered gluten free- that means a product has to have less than 0.002% of gluten in it. For something to be certified gluten free it has to be less than 10 parts per million. Cross-contamination doesn’t only happen in your kitchen or at restaurants, but also in manufacturing facilities. Just because something appears to be gluten free, I have to make sure it wasn’t in a facility with gluten.
- I’m not trying to be difficult, in fact I hate it. I consider myself a pretty easy going person and I like to put others first. But, unfortunately when it comes to my celiac and planning for events, trips, holidays, etc I have to worry about myself and make sure I’m able to eat and not going to get sick. That’s why I ask questions, don’t eat your food and sometimes I’ve had to cancel plans because I don’t feel well. Trust me, I don’t want to hurt your feelings or make you uncomfortable and I’m sorry if I have.
- Just because a restaurant has a gluten free menu, doesn’t mean I can eat there. Gluten free and celiac safe are two different things. Many people choose to eat gluten free and they don’t get sick if the guy in the kitchen doesn’t use another cutting board where gluten hasn’t touched or if bread was on the grill before my piece of chicken…I do. I appreciate you trying to find a restaurant to accommodate me, but unfortunately it’s a lot harder than it sounds. I know the few places I’m comfortable with, otherwise I’ll pack my own food and bring it. It’s really not a big deal to me.
- If you see me reading a label, no I’m not counting calories or looking up the fat content… I’m analyzing all the ingredients to make sure they’re safe for me to eat. Sometimes labels don’t use simple terms like “wheat, rye or barley” and that’s why you’ll often see me on my phone before I eat something. I’m not being rude or antisocial, I’m googling ingredients and looking up manufactures.
- If I accidentally ingest gluten I don’t just get a little stomach ache. In addition to every stomach issue you can imagine, my stomach bloats to where I look pregnant, I get joint pain, my hands and arms tingle, I can’t think straight, I get so incredibly tired but can’t sleep, my hair falls out and it sends my emotions for a loop.
- I know you have good intentions, but I prefer if you don’t try to cook/bake for me. Cross-contamination is a big deal and I’m not comfortable taking chances. I know you say you feel bad for me for having to always pack my own food, but it’s become a part of my life and I promise I’m okay with it.
- Please don’t ask me when I’m getting pregnant or why I don’t have kids. Celiac has led to other health issues, so please don’t ask that. I know it comes from a place of love, but honestly, I don’t want to talk about it at this point.
- I appreciate your concern, flexibility and willing to learn about my celiac and how it impacts my life and most likely yours as well. I know I always haven’t handled it well and I’ve had low moments (I don’t like to call them moments of weakness) so I want to genuinely thank you for being with me every step of the way.
If you’re currently struggling with celiac and have people in your life that don’t seem to “get it”, my hope for you is to know you’re not alone. I also hope that this post will help shed light for those that don’t quite understand it. If you can relate to this post, feel free to pass it along to your family and friends!
I’d love to hear from you, what do you wish your friends and family knew about your celiac? If you’re uncomfortable to comment here, email me!
Here are some other posts I’ve written that you may find helpful!
A Husband’s Perspective: What it’s Like Being Married to Someone with Celiac Disease