Dear Friends and Family – I have Celiac Disease and I feel…

Dear Friends and Family,

I have celiac disease. I feel embarrassed. I feel bad. I feel scared. I feel sad. I feel frustrated.

I feel embarrassed because I talk about this disease so much. I am sorry that it will likely come up every time we spend time together. Most social interactions involve some type of meal, snack or drink and I literally need to think about everything that goes in my mouth for the rest of my life to make sure it is safe, so if you are socializing with me you will likely notice my changed behaviour and hear about it. I feel embarrassed for talking about it so much, if you are someone close to me I know you want to keep me safe so thank you for listening and thanks for not minding as I grab the package and read the ingredients. I am embarrassed that sometimes I will not feel safe consuming food at a restaurant or even at your house. It is even worse if you have gone out of your way to make food for me and then I decide that it doesn’t feel safe (I’m sorry there are just so many variables to consider). I feel bad that sometimes I will eat things that I know I probably shouldn’t, hoping that it will be safe in order to avoid hurting other people’s feelings; and then I will feel really bad if my body pays the price for it later. Gluten makes me physically sick a few hours after I eat it and when I get those physical feelings I also know that I am doing long term damage to my body which I don’t have the luxury of knowing the extent of.

I feel scared a lot. I feel scared about eating. Something that has always been such a pleasure is now often not a pleasure, it is scary. Going out for a special meal… celebrating Christmas or birthdays with people… eating anything that I have not prepared myself is scary. What if this bite makes me sick? Not just sick for the rest of the day, if I continually accidentally ingest gluten my body won’t heal. I have three kids and a husband who I need to stay healthy for. Gluten increases my risk of cancer, osteoporosis, anemia and other bad things. I used to be scared of food in buffets sometimes, what if someone sneezed on it or what if I got food poisoning from it sitting out too long… those fears of food do not compare to the fear of food that I have now.

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I also feel scared for my kids. My husband and I both have celiac disease. It is a hereditary disease, which increases the likelihood that they will also develop it in their lifetime since they are getting it from both parents. I do not want this disease for them. I want them to have a normal safe childhood where they can eat whatever they want at birthday parties, at school celebrations and all social interactions. I feel scared of how I will keep them safe while they are away from home and having to navigate social situations and shared food. I feel scared about them feeling scared, isolated, embarrassed and sad.

I feel sad. I really love food. And yes, there are still lots of things that I can eat and my diet will likely be healthier overall because of this. I am thankful that if I have to endure this disease, it is at a time when there is a whole aisle at my grocery store dedicated to gluten free; yes, it is easier than years ago, but it is still very hard. I have cried at the grocery store many time since my diagnosis. Who knew that I had such an emotional connection to food. My husband’s transition to a gluten free diet was easier, he didn’t cry. He was diagnosed before me, I cried for him. Then, when I was diagnosed I cried for me. I still cry sometimes. Imagine going from being able to eat anything to having to question everything you put in your mouth. I really miss eating out. I miss grabbing a quick sub, or sushi to go when I am out doing errands. Yes, there are some safe places, but everywhere used to be safe now I have to drive out of my way for safe “convenience” food and it doesn’t seem so convenient, so I usually just end up eating at home, or I sit in my car and eat a gluten free granola bar out of my purse. Sometimes I cry when I am driving by restaurants that I used to eat at that no longer feel safe. I feel sad because this also makes me feel like a burden to friends and family. I am sorry that so much thought has to go into a restaurant choice or meal preparation when I am around. I feel sad.

I feel frustrated because everyone seems to know someone who has celiac disease or who can’t eat gluten, but not everyone who is gluten free is really following their diets as strictly as they should be. When they eat something that isn’t safe, people think it is safe for me and my celiac family to eat it too. Just because your friend who has had celiac disease for 20 years still eats a slice of wheat bread once in a while and doesn’t worry about accidental contamination doesn’t mean it is okay for me to do it too. Celiac disease has many symptoms, I feel bad for the celiacs who are symptom free, they are doing long-term damage to their body and they don’t have the constant physical reminders to let them know that they need to be more careful.

I feel frustrated because people keep telling me how many restaurants have “gluten free” options so they think things aren’t that bad for me. What they don’t realize is that at most of those restaurants there is a disclaimer that says the “gluten free” options are not be safe for celiacs and that they don’t guarantee the food is free from cross contamination. When an accidental crumb (i.e. cross contamination) is enough to make you sick it is frustrating. I don’t expect that those restaurants can keep me safe, but sometimes them having a “gluten free” menu makes it harder for me because people think I am being alarmist or overly dramatic if I don’t think that is a good enough standard. Did I mention that I feel embarrassed? I feel embarrassed when I have to tell people that I can’t order off the gluten free menu when my spidey senses tell me the restaurant or situation is not safe. I feel embarrassed asking friends and family to change their restaurant choice to accommodate my dietary needs. I feel embarrassed asking the waiter a million questions while I am ordering. I feel sad.

I feel hopeful that I can help raise awareness about celiac disease, non celiac gluten sensitivity and other illnesses that require people to follow a gluten free diet for medical reasons. I hope that by educating my friends and family about the challenges and struggles of celiac disease, my kids will have an easier time than me if they eventually get this hereditary disease from me or their dad. I hope that if I am a strong advocate for myself they will see that and they will be strong advocates for themselves in the future and that will keep them safe.

I am thankful when people ask questions and want to learn more about celiac disease. I feel thankful when people listen to my answers. I feel thankful when people are not insulted if I bring my own food to their house because they understand that making their house and food safe for me is harder than it seems. I feel thankful for my friends and family who support me and try to see things from my perspective. I am thankful for everyone who tries to keep me safe and healthy. I am thankful that there are dedicated gluten free restaurants, or restaurants who have separate prep areas and strict gluten free protocols in place to keep me safe so I can still enjoy an occasional night out. I am thankful for the gluten free isle at my local grocery store. I am thankful that most potato chips and some chocolates are gluten free (I am a bit of a junk food junkie). I am thankful that I have my health and I caught my celiac disease early. I do realize that there are many other diseases and illnesses that are much worse than celiac disease. I just wish I didn’t have to think about every single thing that I put in my mouth. Every. Single. Day.

Love,
Marcia

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