Sunday, April 1, 2012

Celiac Disease Sucks Sometimes

Most days, I don’t mind having Celiac Disease. I don’t really have to think about it much anymore- it’s just the way my life is now. Sometimes, I even feel as though having Celiac Disease is a blessing in some ways and has made me an overall healthier person.
However, every now and again it sucks! There are certain social situations involving food that are just no fun for me anymore. Unless I am invited to a fellow Celiac’s house, any breakfast, brunch, lunch, or dinner always turns uncomfortable for me at some point.
It always follows a very similar pattern: I cannot eat the food that is being served, so I don’t eat. I don’t comment on it, I don’t think about it, I just mind my own business while not eating. A well-meaning participant tells me that I should eat something. I then tell them that I cannot. If the person knows about my disease, they promptly drop the subject, apologizing for having forgotten about ‘that’. If the person does not know about it, things get interesting- the conversations can either get cut quite short or become very detailed or very awkward.
Just the other day, I explained very simply that I am unable to eat anything containing flour. My conversational partner, after considering this for a moment, replied: “Oh… I wish I had that!” and then went into a detailed account of how much she loves breads and cake. I just nodded and left the table.
Because she doesn’t know! She has no idea how much it sucks sometimes to not be able to eat any food that your friends prepare. Or to eat at restaurants. Or to eat a regular delicious baked good. She doesn’t know the impact it has on your life to give up all gluten containing foods. She doesn’t have to read the label of every product she buys, including things like toothpaste or lip-balm. She has never had to make sure she doesn’t kiss her children after they’ve eaten a slice of birthday cake at a party for fear of cross-contamination.
Of course, there are a bazillion diseases that are much worse. I am actually very lucky to ‘only’ have Celiac disease. When my doctor told me they suspected either Celiac or Crohn’s Disease, I prayed that I would get the less severe diagnosis of the two.
But some days, it sucks. Some days, I just want to eat a Big Mac (even if they are horrible for you) or a donut or a slice of pizza or the delicious smelling fresh bread. Some days, I wish that people would invite us over for dinner. Some days, I wish I didn’t have to ask my daughter not to touch my food or my glass.
Celiac Disease is an autoimmune disease that is well controlled by sticking to a gluten free diet. It is not an allergy. It is also not like e.g. lactose intolerance, where people can take an enzyme to help them digest their food. It doesn’t go away- it is a life long illness. It is often accompanied by other autoimmune disorders and puts you at an increased risk of developing intestinal cancer. There are worse things, but it is a disease nonetheless and I wish people would take it more seriously.


  1. My daughter has celiac disease. She was diagnosed when she was 4 years old. She is 7 now and well adjusted to the disease, but I know she would totally agree with your post. She is the only one in our family that has the diesease. I totally understand where you are coming from. Since she is still school age, I HAVE to pack her lunch EVERY day, and when a kids mom brings cupcakes in for their kids bday, she can't have one, I hurt for her. She has definately knows what she can and can't have when it comes to school parties, and I always tell her "If you're not sure, don't eat it." I have 2 other children who don't have celiac and it would definately be easier if we could just hit the Mc D's drive through on the way home, but I can't. I feel your pain! and so does my daughter!

  2. I only have a gluten sensitivity, not celiac, so I don't totally know how this feels, but I can relate. It makes me so sad and angry when people say they wish they had a gluten sensitivity. Ummm, YOU DON'T WISH IT.

    Have you seen the sh!t people say to celiacs videos on you tube? So funny. Sounds like you might need a laugh today.