The number 1 thing you need to know about celiac disease is something most people neglect to realize. They just don’t know and in today’s society not much is being done to end this lack of essential knowledge.
If there’s one thing, the most important thing, you should know about Celiac Disease is that it is NOT a choice.
As with May being Celiac Disease Awareness Month, it’s important to bring up this one simple fact. Those of us with celiac did not choose this. We are not gluten-free because we think it’s healthier, are paleo, want to follow some awful trend, think was have some “intolerance” (instead of taking the time to look at FODMAPs), or think a wheat-allergy is the same thing as celiac disease, etc.
Celiac Disease is an AUTOIMMUNE DISEASE. Our bodies literally attack themselves when gluten is present, as small as <20ppm can have drastic effects on our health. Over time this damage caused by gluten consumption or cross-contamination will block nutrient absorption leading to a whole host of side effects including, but not limited to: infertility, depression, weight loss, anemia, osteoporosis, hair loss, stunted growth, and even cancer.
And the symptoms we get when we become “glutened” or sadly go undiagnosed or misdiagnosed? Diarrhea, bloating and gas, sharp pains and aches, incredible fatigue, migraines, etc. We basically are either stuck in bed with no energy to move out from under the covers, or running to the bathroom for the next 3 days.
Did I, did we, choose to be sick? No. Did we choose this genetic autoimmune disease? No. Did we choose to have to divulge our health needs to everyone who will be serving us food? No. Did we choose to have to be so very vigilant about every food bought, given, prepared? No. Did we choose to have to worry about our make-up and hygiene products? No. Did we choose to have to make some of the most difficult accommodations requests in college or school? No. Did we choose to have big name companies make a mockery of our illness just so they could jump on the bandwagon and make money off of “gluten-free”? NO!
So is Celiac Disease a choice? NO!
Over 7 and 1/2 years now, I have learned to manage my illness, thrive and be ever grateful for the passion its created. I don’t let this illness hold me back. If I want a bagel, I’ll have a bagel! If I need certain accommodations in college, I’ll get them. If you think I live this way by choice or chose this for some other reason besides keeping my life, you better be prepared for an angry celiac rant (like this post)!
The takeaway? CELIAC DISEASE IS NOT A CHOICE! Respect that and help advocate and spread real awareness.
More posts?
+ My Celiac Story + Medical Overview + Why Celiac is Not an Allergy + What to Avoid with Celiac + Myths Debunked + About Cross-Contamination
So tell me:
+ No questions, just my call for you to stop the myths, show respect, and raise awareness!
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Erin @ Stay At Home Yogi says
I don’t have Celiac and neither do any of my loved ones. However, I thought the title was important enough for me to click on! Glad I educated myself. 🙂
Rebecca @ Strength and Sunshine says
Great!
Emily @ Recipes to Nourish says
So wonderful that you’re talking about this. And even for those who don’t have Celiac but have a true gluten free sensitivity, it’s not a choice. There are so many of us who just can’t do gluten.
Rebecca @ Strength and Sunshine says
I don’t believe in that.
Twochicksandamom/Donna says
This is such vital info for those who suffer from the disease or have family members who do.
Rebecca @ Strength and Sunshine says
No, I feel this post is for those who don’t. That’s why I wrote it.
kimmythevegan says
Great post Rebecca. I’ve been seeing some people saying that avoiding gluten is a choice and I find it frustrating. I empathize with you, I have no idea what it must be like for you. It must be difficult at times, but you always keep a positive attitude and take charge of your health & well being.
Well said!
Rebecca @ Strength and Sunshine says
Thank you!
Amberjane says
My daughter is Celiac and this explains it so well!
Rebecca @ Strength and Sunshine says
Glad you can relate then!
Nikki Frank-Hamilton says
I am gluten free, but don’t have celiac, and I wish people would understand my diet better too. My reaction isn’t as bad as yours, but it’s horrible for me. My joints swell to the point of feeling like my skin is going to burst and the pain lasts for days. And who wants to be in the bathroom for hours! UG! Great post, and I hope that it will help spread the word about Celiac Disease!
Rebecca @ Strength and Sunshine says
Thanks Nikki!
Debbie says
Thank you for this information. Going gluten free has become a fad of sorts and people tend to forget that celiacs really must not eat gluten, and that it is not a choice.
Rebecca @ Strength and Sunshine says
Exactly it!
Lisa Orchard says
One of my son’s classmates has just been diagnosed with this. I haven’t heard much about it until recently. Thanks for sharing.
Rebecca @ Strength and Sunshine says
Wow, that’s extremely surprising!
Stacey says
Yes! As a chef, I have encountered people that actually have this disease vs. people that get on the bandwagon and want the attention of having a catered meal to their lifestyle choice. There is a difference between having an illness vs. a lifestyle choice.
Rebecca @ Strength and Sunshine says
Yes! But please know that those of us with celiac NEED the most care and vigilance!!
Linda @ Veganosity says
It’s not a joke at all. I’ve heard people say that they’re “slightly celiac.” I also ask them what that means because there is no “slighlty,” you are or you’re not. Good for you for being true to yourself and putting this out there.
Rebecca @ Strength and Sunshine says
Haha, ugh, yes!!! And those are the people who don’t even know what gluten is!
Jamie @ Medium Sized Family says
This disease runs strongly in my family. Looking back, we can see generations of symptoms that went undiagnosed. It’s likely that many of my grandmothers died from it. I’m glad you’re bringing more awareness to it!
Rebecca @ Strength and Sunshine says
O goodness yes! We’ve made progress in diagnosing, but not enough and having it years and years ago, it was just unheard of!
Cathy says
This was very well said! Thank you for speaking up for us! I’m sharing this on Facebook and twitter.
Rebecca @ Strength and Sunshine says
Thank you so much Cathy!
Casserole Gals says
My sister has Celiac Disease and in the past years I have learned a lot. I have never thought she had a choice, it is like being tall/short, near/far sighted etc. It is something you have. For every holiday, party or get together we always, have foods that she can eat. It’s not that hard and tends to be healthier food choices. What is amazing is how many people in the food industry don’t know what it is and how to prepare food.
Rebecca @ Strength and Sunshine says
Yes, yes! That’s why we just need to keep screaming our message and raising the right (and true) awareness about this incurable, lifelong disease!
Kristy @ Southern In Law says
YESSSSSSSSSSSSSSSSSSSSSSSSS!
This is something I am CONSTANTLY trying to get people to realise – as well as the fact that coeliac disease does NOT vary in severity. The number of times I’ve heard people say “I/so-and-so is a little bit coeliac” or “she’s really coeliac” and it only goes to show that the awareness is seriously lacking when it comes to coeliac disease. There’s no little bit/a lot coeliac – if you have coeliac disease, gluten IS going to do damage – sure, you might not be able to feel it externally, but it’s happening inside.
Rebecca @ Strength and Sunshine says
Hahaha yes! Some celiacs react to smaller amounts, some have no symptoms at all, but you either have celiac or you don’t. There is no “intolerance” in-between. I’m sorry, but I do not believe that.
Natalie @ A Fit Philosophy says
Great post Rebecca! I am gluten free because I have a sensitivity to gluten. I can’t even imagine what it would be like to have Celiac Disease! I’m glad that you’re sharing this post and spreading awareness. It is certainly no joking matter! You go girl!
Rebecca @ Strength and Sunshine says
Thanks Natalie!
Gin says
Girl, that was strong and proud. Well said! It’s hard to imagine how anyone would think Celiac disease is a choice, but people are baffling. I don’t think most people realize how serious it is (or in the case of Hanover’s, care) and I’m so glad you’re telling it like it is.
Rebecca @ Strength and Sunshine says
Thank you Gin! (I was scared to have this go live yesterday!) But everyone knows by now, I DO say it straight up here on my blog, haha! No sugar coating!
Hannah @Sunshine and Spoons says
Great article! My SIL has Celiac Disease and I’ve seen how difficult it can be to live with it. I’ll admit that I believed many of the myths you wrote about at the beginning of your post until my SIL was diagnosed. I now make it a point to educate others about this awful disease!
Rebecca @ Strength and Sunshine says
Well thank you so much for showing compassion and supporting her (us)!
Kristina @ Ms.Modify says
I love this post and couldn’t agree more with you! The phrase I used to get from people is “Oh, come on one bite won’t kill you”! Ugh, if only they understand the severity of Celiac. Thanks for spreading awareness!
xo, Kristina
Rebecca @ Strength and Sunshine says
YES!!!! It actually CAN kill us! Just because we don’t immediately break out in hives doesn’t me it doesn’t reek havoc on our bodies!
Ellen @ My Uncommon Everyday says
We were on the same awareness-spreading wavelength about today’s posts, eh? 🙂 People with chronic illnesses, autoimmune diseases, whatever don’t choose it at all. Life would be “easier” without our medical issues – no one would choose them! But we do what we can, and we usually do a pretty good job.
Rebecca @ Strength and Sunshine says
You said it! We learn to make the most of it and keep living our lives the best ways we can! xoxo
Kyra @ Vie De La Vegan says
This was a really informative post Rebecca, thank you! Celiac disease is something that I don’t really know much about, so thank you for informing me the truth and clearing up misconceptions <3 and I love that part how you're like "if I want a bagel, I'll have a bagel!" – yay for gluten-free bagels!
Rebecca @ Strength and Sunshine says
Thanks Kyra!
Haha! I do not let this illness get in my way!
Aleksandra says
If I eat something with gluten, I get a full blown flu experience – including very high fever and all the other nice stuff. So every time I meet an asshole who serves me normal bread instead of gluten free one because he cannot be bothered to go to another cupboard for a gluten free one, I just wish people stop thinking it is a fashion choice.
Rebecca @ Strength and Sunshine says
Yes!! It literally makes us sick! I can’t even more from bed and just want to stay in a dark room and sleep!
Lesq says
This was so eloquently written, motivating and TRUE!! It came from your authentic self. It s so awesome to read this upbeat post, regarding something that can be seen to those outside the community as a burden, and feel the commitment and energy we all need to stay the course for our health. Sooo many people just DO NOT care and some are so helpful. I really just have to constantly champion my own cause and I live in NYC where you would think people would be accommodating, but I find more often then not waiters and dinner companions think I make this up am annoying, ask endless questions, I guess you could say incessant. I wouldn’t have to be if people would listen and take it seriously. To bad bec the alternative to eating wrong is a nightmare. Thank you for your constant positive, encouraging blog posts
Rebecca @ Strength and Sunshine says
Yes! I’m glad you could relate and understand!
Emily @ My Healthyish Life says
Oh YES! It’s such a misconception that we willingly choose to eat GF (and that we can even stomach a bite or two if we really wanted).
Rebecca @ Strength and Sunshine says
Yes! Amen!
Vicky C says
Great post, Rebecca! I have known some friends in the past that have celiac disease and it’s definitely no joke! I think you are such an inspiration with your mission to educate people and provide healthy, gluten free recipes (that look amazing!!). Keep doing what you’re doing! 🙂
Rebecca @ Strength and Sunshine says
Thank you so much Vicky! xoxoxo