Sunday, September 13th is National Celiac Awareness Day so the blog post this week holds a special place in my heart.
I was diagnosed with Celiac Disease in October of 2019. In one fail swoop my world was turned around. You might be thinking, "Isn't she being dramatic? She just had to change what she ate, how hard could that have been." In this post, I will walk you through it all because sooooooooooo many people do not understand what Celiac Disease is, much less the struggles and simple adjustments people can make!
So what the heck is Celiac Disease?
Celiac Disease is an autoimmune disease where the body can't digest gluten. This causes attacks in your small intestine. Celiac, left undiagnosed, can lead to fertility issues, other autoimmune diseases like Diabetes and MS, and even intestinal cancer.
Although there is no cure for celiac, the way to help it is a very strict gluten free diet.
What in the world is Gluten?
Gluten is wheat, barley and rye. That means wheat flour, cakes, breads, bread crumbs, muffins, cookies, brownies, beer, malt, wafers, crackers, soy sauce, chips, and so so much more.
"Oh that's not too bad right?" Wheat flour is in EVERYTHING EVERYTHING EVERYTHING!!
You don't even understandddd how many things have wheat flour in them until you have to read ingredients on every item you put into your mouth. Go into your pantry right now. I bet you can pick up 10 items and at least 7/10 items will contain wheat flour in them.
Common misconceptions:
- It is not in milk
- It is not in cheese
- it is not in sugar
- it is not in potatoes
I can't tell you the amount of times I have gone to a restaurant and asked if an item was gluten free and they responded with "No, it's not because it has milk in it" or "No, it's made of potatoes."
So what's in like in my shoes?
Hard. At home I feel perfectly safe even with a gluten eating roommate. I clean the kitchen countertops constantly and make sure all of my gluten free things are on their own shelf.
Restaurants.... CONSTANT STRESS! I only go to a handful of restaurants in Baton Rouge and out of those there's only ONE that I feel completely safe eating at - P.F. Chang's. They cook my meals in a completely different area, using different plates so every waiter/waitress knows, gluten free soy sauce, the whole shebang.
A look at my life
- Never "Oh let's stop here to eat" Always "Where can Whitney eat?"
- "We have a gluten free menu" *contains 2 items*
- Always feeling like a burden because you're constantly having to make choices revolve around you
- Crying in a grocery store because I was so overwhelmed and everything I picked up had gluten in it
- Having to bring a lunch box to social events because I probably can't eat those foods
- Sitting at a restaurant not eating a single thing because I wanted to hang with friends but couldn't eat there
- Telling everyone in the world I'm gluten free and being judged because they think its a fad
- Eating the same things over and over because there's only a handful of GF snacks and treats
- Going on a trip with friends or family and being panicked for weeks I'm not going to have anything to eat
- Purchasing a loaf of bread for $7 because it's "gluten free"
- Paying an extra $2 for a gluten free bun or gluten free pasta
- Paying $130 for groceries when the exact same grocery run used to cost $70
- My friend asking ME where I can eat for HER birthday brunch (I'm grateful for her and she didn't want to go where I once was glutened but makes ya feel really bad that you have to pull attention away from her on her birthday)
- Crying in pain on the bathroom floor because I accidentally ate gluten and I have no idea where it came from
- Reading every single ingredient of every single item I purchase or ingest
...
So yeah. There's a lot going on. Not just physically for my health but emotionally and mentally.
I constantly feel like a burden on other people who try to adjust meals to my disease or my family who is CONSTANTLY having to altar plans to what I can and can't have.
I constantly have to turn down people's food because they thought it was gluten free but one small ingredient isn't.
I constantly get stressed at restaurants as to whether they're preparing my food correctly or if one stray noodle fell into my gluten free pot (this has happened before) or if they remembered to use the gluten free flour.
I constantly am having to tell my people about my disease. It's not one of those that you can just push to the back of your head.
I constantly am thinking about how this is for the rest of my life and not just a year or two. How at my wedding my cake will be gluten free and the food will be gluten free so I don't risk getting sick on my wedding day.
I constantly am stressed about how my future kids have a higher chance of developing celiac because of me and there's nothing I can do to prevent that.
I constantly am panicking every time I get a measly stomach cramp thinking I'm about to have a gluten attack. I am also constantly panicking that I'm going to s*** my pants because that has happened before and is very common in Celiacs. Yeah, bet you didn't know that little fact.
The little things in life make me happy. Like going to Yellowstone National Park and finding Gluten free sugar cookies at a GAS STATION! Or going to Gardner, Montana and this restaurant has almost EVERYTHING gluten free! (Pics below) Or a Client giving me a gluten free bundtlet because they remembered I was gluten free. Or my boyfriend constantly having to advocate for me because sometimes I just get too tired and put down to do it myself. Or my grandfather making my own pot of Gluten Free Lunch every Sunday. Or my dad buying 8 billion boxes of these Gluten free crackers and things because they were on sale at Winn Dixie and GF can be hard to come by. These little things make my worries go away and put the biggest smile on my face.
That is my life with celiac. I am living, I am working, I am eating (more expensively but ya know...) and I am having a great life.
I don't want pity. That's not the point of this. I'm grateful that my celiac disease is manageable with a diet change (which actually is a lot harder than it sounds). I know there's a lot going on with other people and others have it worse...heck my own brother has it 100 times worse than me.
This is why I wanted to write this post. Not to complain about hardships but to educate everyone. Heck, I didn't even know what it was until I was having a small intestine biopsy for it! It does suck. It really does. I'm always a "look at the bright side" kinda gal but sometimes you just have to admit it sucks. I have survived changing my diet and I'm doing great now. In the beginning, there were many tears, lots of stress and very hangry moments. And I'm not the only one dealing with this.
So learn about it, do something about it, be more aware about it. If you have a restaurant or work in a restaurant - notice it. Notice what is gluten free on your menu, notice whether you used the same spoon as the regular pasta sauce, notice whether bread crumbs fell on the table or are still on your hand. The smallest difference makes my heart happy. But also the smallest mistake could make my stomach very very very unhappy.
My birthday is Friday and National Celiac Awareness Day is Sunday. On Sunday my family is having gluten free gumbo with gluten free biscuits and Nothing Bundt Cakes' Gluten Free Bundtlet!
Until next time,
Whitney