Imaging living your life with a disease that no one understands. Imagine what it’s like if no one believed you, when you said you weren’t well. Imagine going to the doctors and being told that your sickness was all in your head. Imagine what it’s like to live with a disease that is widely made fun of an is the butt of many jokes. Imagine being afraid every time you put something in your mouth, it could make you sick. Imagine eating something and getting so sick that you spend the day in the bathroom or sleeping all day because you are too weak to shower or having such brain fog that you can’t remember your phone number to ask for help. Imagine that this sickness if not treated properly will most likely lead to an early death due to a host of other complications…. this is what it’s like to have celiac disease.
Celiac disease often goes decades before it is diagnosed properly and patients who finally get a diagnosis are often so relieved to finally know what’s wrong with them, that everything else is secondary. Celiacs in general have been through hell (physically, mentally, emotionally) and honestly live their own private hell every day. Yes some days are better than others and some days are downright fabulous however, this may take years to achieve.
Celiacs are some of the strongest people you will ever meet because some days it takes every once of everything you have to just to make an appointment, get to work, make dinner and pretend that you are fine. Holding it together for everyone else becomes your speciality. Everyone is so tired of asking - “How do you feel today?”, no one more than you, I promise. Every day is a new adventure and a new day to navigate the best you can. Unfortunately, there are no vacations or remissions from this disease. Sometimes this disease can consume you. Some days you just sit and cry because your not well, you’ve held it in the best you could this week and you are so tired, more tired than anyone could ever image and yet you still have to show up in our lives every day and most people never know what you are going through. We don’t talk about it because no one can really understand unless you live with this every single day. And, yet we somehow find a way to put on a smile and make yet another promise to ourselves that we will do better tomorrow.
These are the top 10 things we’d like you to know:
- There are no cheat days, no I can’t just have a little. Just one bite can lead to two weeks of crazy, sometimes unbearable pain and reactions that we wouldn’t wish on our worst enemies, so please stop asking us - the answer will always have to be NO!
- Just because I look fine on the outside does not mean, I don’t feel like the walking dead. If you really care about me look closer….look at my eyes, look beyond the makeup you will see the pain.
- This wasn’t something we chose to do, living gluten free this is something we have to do for the rest of our lives. So, no I’m not on some crazy fad diet.
- No I’m not intentionally being difficult in a restaurant. And, yes I have to ask that many questions. Yes I may need to speak to the chef if I get even a hint of resistance from the wait staff that they are not trained properly or are not taking my requests seriously. The more I get glutened, the more additional health problems I will have, so get over it.
- It’s more than a flipping tummy ache or one trip to the bathroom if I get glutened. One one hundredth of a gram (that’s equivalent to one crumb) sets off an immune reaction in my body for the next six months, so this is serious.
- Yes there are lots of yummy foods that we can eat and we are constantly tinkering with recipes.
- Of course I miss pizza, it was one of my favorite foods. Yes, I’ve learned to make a mean fabulous version filled with lots of veggies, sauce and using a gluten free alternative grain. No I can’t eat dairy either, approximately 50% of celiacs can’t and some days that is harder than the whole gluten free diet thing.
- Yes it’s tough on adults but imagine being a child with celiac disease. These kids are constantly being left out of birthday parties or made to feel even more like an outcast when everyone in their class can participate and they can’t. So please be kind and teach your kids to be kind, they didn’t ask for this and they will have to live with this for the rest of their lives.
- I’m really not trying to flake on you or inconvenience you or be difficult… if I have to change or cancel plans last minute, trust me I was doing everything humanly possible not to but some days I just can’t.
- No this isn’t all in my head, I’m not a hypochondriac I’m just trying to understand my illness and no two celiacs are alike and neither are our symptoms, so please try and be patient with us. This is a lifelong journey of figuring out what works best for me.
- Bonus, celiac disease is not just a gastrointestinal disorder, only one in eight celiacs have gastrointestinal issues, hence part of the reason it is so difficult to diagnose, get under control, heal and live with.
Have some additional comments you wish others understood about celiac disease, please share below. (Should you’d like more support on how to live life with gluten challenged, please check out my book Gluten Free Guide to a Healthy-Do-Over).