What Does Celiac Disease Mean to You?

when is celiac awareness day?

A rare Sunday post I know. But did you know that today is Celiac Awareness Day? No…really…there’s such a thing. Pretty cool.

Anyway, I couldn’t let the day go by without acknowledging this thing called celiac disease. But rather than me blather on and on about what celiac disease means to me, I’d thought I’d give the platform to the community today.

I have a page on this site called Faces of Celiac Disease (if you are not on the page, get your mugshot up there). When a fellow celiac submits their picture, I ask them to complete this sentence:

Celiac disease…

They have 75 characters to say what celiac disease means to them. Today, I’d like to highlight a few of the 836 answers so far. And since it’s my blog, that’s what I’m going to do 😉  Take note that celiac means so many different things to so many of us. We’re all affected by this autoimmune disease in our own personal way.

After reading these, tell me…what does celiac disease mean to you??

Celiac disease is a serious autoimmune disease.

Celiac disease is misunderstood.

Celiac disease is sometimes sad and aggravating but we are GF to stay healthy and happy!

Celiac disease is a challenge — one that I meet head-on every day (mostly successfully).

Celiac disease makes me feel very isolated sometimes.

Celiac disease can’t stop me from seeing the world and enjoying life!

Celiac disease is more than just a change in one’s lifestyle.

Celiac disease a disease that makes eating a very involved, complicated puzzle.

Celiac disease attacked my central nervous system and nearly destroyed me before diagnosis.

Celiac disease has not stopped me from smiling and just being a kid!

Celiac disease saved my life.

Celiac disease has given me ups and downs but this is who I am and I’ve come to accept it.

Celiac disease nearly killed me. Twenty years on, I’m still trying to live with it.

Celiac disease means my mommy makes me yummy healthy food. I still get cookies!

Celiac disease is a pain in the ass but could definitely be worse!

Celiac disease is NO JOKE! A 100% gf diet saved me from a life of pain and misery.

Celiac disease heightens my awareness of what I put into my body.

Celiac disease is annoying! People think that I’m a hypochondriac.

Celiac disease has forced me to learn how to cook and eat healthier. I now love to cook!

Celiac disease is a lot of work. But I’m glad to have answers.

Celiac disease has given me a new appreciation for life.

Celiac disease makes it difficult for me to feel comfortable going out with my friends.

Celiac disease is finally the answer to why I have felt like crap for years.

Celiac Disease is hard for a kid but does not define who I am!

Celiac disease gives me, uh, what was the question? Oh ya, brain fog!

Celiac disease was a diagnosis that helped me learn how I could save my own life.

Celiac disease is what I have, but not who I am.

Celiac disease has been a curse, but also a blessing, making me eat more healthy.

Celiac disease has caused distrust in the medical field.

Celiac disease has made me realize I’m stronger than I thought.

Celiac disease was an answer to my prayers. I was very ill and just wanted to know why.

Celiac disease is harder physically, mentally and spiritually then can be put into words.

Celiac disease does not make me a bad dinner guest.

Celiac disease is not a fad.

Celiac disease is a bumpy ride and an epic journey!

Celiac disease freaking sucks!

(I thought I’d finish strong.)

As for me, and I am granting myself more than 75 characters, celiac disease is a constant unwanted companion. It never leaves me. As Mrs. Dude just said this morning…every day is celiac awareness day! And yet, in a perverse kind of way, I am also thankful for it. I control my disease with food. I have made great friends within the community. I have become a “voice”; not one that everyone loves, but still 😉 And this may sound odd, but it has given my life a kind of purpose that I did not have before I launched this blog.

I will ask one simple thing of you today. Try to find one person that you can spread celiac awareness to. That’s it. Just one person. Together, we can and will make a difference.

And get yourself on that wall. The more faces…the more stories…the more powerful.

Thank you.

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24 thoughts on “What Does Celiac Disease Mean to You?”

  1. I was just diagnosed on Friday and am still in the “pissed off at life” stage. It was definitely serendipitous to find your website. I actually had a little meltdown in the middle of the grocery store looking at all the things I am now unable to eat. Several people walked past me with uncomfortable looks on their faces, then my husband put his arm around me and said, “Isn’t there some kind of medication you can take? What’s that stuff called? ummmmmmm, oh yeah, Cialis? Bless him, he didn’t realize that’s an erectile dysfunction med. His comment snapped me out of my pity party, but made me realize most people have no idea how serious CD is and how life altering it really is. Glad I stumbled upon your site. It’s made me a little less anxious and depressed about the turn in my life. 🙂

      1. Spent the weekend reading everything I could find on CD and gluten-free and I have to admit I’m on overload. I honestly don’t know how this “life-style” change is going to be possible. I keep finding sites that say CD is a “stress” related issue and that maybe that’s all that’s wrong with me. I am panicked thinking about all the changes not only myself, but my family, will have to endure to accommodate this whole gluten-free diet. I mean, come on, even Chapstick????? Everything seems to be suspect and if you aren’t a nutritionist, dietician, chef, chemical engineer, and food and medical industry expert, how the hell are you supposed to know what’s ok and what’s not?????? And how the Hell are you supposed to know if you’ve been exposed if you don’t get symptoms from that exposure? AAAAAAAAND how the Hell are you supposed to know what to say to people when they scoff at your “fad” diet (which is what it seems people think this is)? No offense, but this whole thing really blows. I just went in for an EGD because my dad and uncle have stomach cancer and I promised I’d get screened because I was having what I thought was GERD symptoms…… now I have CD and a severe lactose allergy! Which I did not have the week before (yeah, I know I did, but you understand the logic behind this statement.) Everything seems so gloom and doom if you have gluten exposures, but I just wonder if it’s “worst case scenario” versus “this could possibly happen.” I guess I’m not ill enough to welcome the diagnosis and quite frankly, more freaked out by the inconvenience of this new way of trying to live. Soooooo, do I win the “huge whiney-butt award,” or is this a natural reaction?

    1. Tracey, I have totally been there with a meltdown in the grocery store. I was in the bakery section with my husband who was picking something out for himself for breakfast on the go. I was 6 months into being gluten free after my diagnosis saved my life. The smells overwhelmed me and sent me into a full blown panic attack. The store we were in had very little food that was safe for me to eat. I thought I was over the “mad at the world” stage, but that day I was pissed at everyone, especially my husband, who doesn’t have to be gluten free. I promise, it does get better, though. That doesn’t mean you won’t still have days like this now and then. It was just a month after my big meltdown that I realized how much my husband had been paying attention to my needs. We were invited to a cookout at his cousins and he explained what I could and could not eat and then went on to tell his cousin that it’s not just the food itself, but how it’s prepared and that I have to be careful of cross contamination, too. I cried and wrapped my arms around him because as someone without Celiac, he’d been paying attention and he’d become my biggest advocate. There is a big, wonderful community of Celiacs out there who’ve helped me learn about this disease and how to live with it without completely losing who I am to this disease. It isn’t easy and it sucks to have to be aware and thinking about it 24/7, but there are perks. You are not alone!! You will get through this!

    2. HI Tracey, Just know that you are not alone. I myself went to Whole Foods and left 3 times in tears without buying anything. Do yourself a favor and start small. Just eat whole fruits, whole veggies and lean proteins at first. You will start to feel SO much better. Then do not do what we did and buy everything that said gluten free on it and eat it. 20 pounds later and the food did not taste all that great. There are good options out there for your bread, pizza and pasta and crackers, just take your time. Read Read Read all the websites and listen… most of all to your body. You will be so much better sooner than you know. Sure there are challenges…so many but at least you have a diagnosis to get you started.

  2. I got my diagnosis over 3 years ago. But I clearly remember my first grocery shopping trip after my diagnosis. It took over two hours and I left the store hysterical! And that happened a few times. It does get easier, I promise! ❤

  3. Melt down on aisle 3! It must be universal!

    Tracey, we are here to tell you it will get easier…not always easy… but easier.

    Give yourself time to mourn your past way of life but as you (hopefully) start to feel better you might switch from being pissed off at life to pissed off that you weren’t diagnosed earlier!

    Be kind to yourself in the process! Try to laugh (this blog helps with that) and reach out for help!

  4. I had no idea that it was Celiac Awareness Day today. Went to a farmer’s market yesterday where they actually had a gluten free section. Came home with some muffins and acouple of pirogs. 15 years ago, you couldn’t get gluten free stuff anywhere. Now there’s even products at the farmer’s market. Awesome!
    Sometimes I post recipes in my blog (all the recipes are gluten free of course!). I haven’t posted recipes for a while now, but since it’s Celiac Awareness Day, I might start to write up one of my bread recipes?
    Sent my photo to your faces of celiac page too, great project Mr. Gluten Dude!

  5. Can we start a “Why the Hell Not?” Campaign?

    Every person I’ve encouraged to get the blood test was questioned by their doctor. I warned them it would happen. My husband met with a bit of ridicule: “You and your wife aren’t related, are you?” (No, but we are both German/Irish) Finally he asked the doctor “can you tell me, why he hell not?”

    Test requested.

    Screen your patients for Celiac Disease. Why the hell not?

  6. You’ll become a gourmet cook Tracey! Yes. it’s so trying at first but don’t allow the word Celiac to take you over!
    Easier said than done at this point. We’ve all been there……
    You’ll be walking down isle 3 with confidence, grabbing what you know you can cook, & eat! 🙂 Take small steps, when you start feeling better within yourself you’ll face this challenge head on~
    Good Luck!

  7. This is for all the non-diagnosed (probable) Celiacs who know that gluten affects them greatly in many very serious ways , but refuse to suffer through one more day (not to mention the month required) of eating gluten to get a diagnosis from a doctor.

    Celiac is not a choice. We are not attention seekers, hypochondriacs, nervous-nellies, insane (well…most of us), or people who are trying to make life difficult for anyone else. We just want to feel and be well, and if it takes us standing up for ourselves…then that’s what we will do.

  8. I posted this to my wall on Facebook, it’s my story and I hope it prompts some of my family to get tested.

    Today is Celiac Awareness day and I thought I would share my story. First what Celiac is, it’s an autoimmune disease that is hereditary and causes your immune system to attack the lining of your small intestine and destroy a structure called villi where your nutrients are absorbed from. There are also enzymes produced by villi that allow you to digest certain sugars like lactose. This autoimmune reaction is triggered by the protein gluten which is present in wheat, barley, rye, and contaminated oats. There are different levels of sensitivity that may trigger the immune system response, unfortunately mine is extremely severe and even most labeled gluten free products are not safe. I can no longer eat at a restaurant at all unless the restaurant is a dedicated gluten free facility.

    My symptoms likely started in infancy where I had bad colic and chronic ear infections. As I grew up I seemed to have way more gas than your normal kid and it was particularly noxious. The first signs of malabsorption really started when I was a freshman in college. I had diarrhea every morning. I thought this was how all people were and did not realize anything was wrong. As I progressed into my late 20’s the bowel problems progressively got worse to the point where I ended up at Vanderbilt being tested for a variety of illnesses. I was scoped every which way and gave copious amounts of blood for testing. In the end the only thing they found was abnormal liver results. I was checked for all of the normal liver problems and then dismissed with an IBS and GERD diagnosis. I continued on for 12 more years and progressively got worse until finally I began having bouts of extreme upper abdominal pain along with the daily diarrhea that had become my constant companion since my early 20’s. During this time I began having balance problems, migraine headaches, and trouble thinking clearly. As a result I moved back in with my parents until the worst of these symptoms resolved. Additionally, my teeth began to decay rapidly. I went from having only 1 cavity my whole life to having 6 in 1 year. The following year I had 9 more, despite the dentist telling me how well I cleaned my teeth and how little build up I had. I spoke to my PCP and he referred me to a GI for follow up. I had around 20 different blood tests run, a stool analysis, an endoscopy, and a colonoscopy done. I still remember the nurse calling me that day and telling me that I had Celiac disease, my antibodies were extremely high. This began my road to recovery and the challenge of learning what living gluten free really means.

    There were several false starts in this process. When I was first diagnosed we thought this meant I’d have to avoid things like bread and donuts most of the time, but I’d be able to have them once in a while once I was healed. Unfortunately, nothing could have been further from the truth. The first realization hit when Jenny had spent several days preparing gluten free food for me to take to Evansville for a family gathering. We still felt like we were probably being over cautious, but Jenny put up with my paranoia. I ended up sick the whole weekend, despite all of our preparation. When we got home, both of us extremely frustrated, Jenny tore through the cabinets looking at all the ingredients to find one phrase on a package of garlic powder she had used “Processed in a facility that also processed wheat.” Realization hit me then of just how careful I was going to have to be and what this meant for our social life.

    It’s been a little over a year since I was diagnosed with Celiac disease and I wish I could say our trip to Evansville was our only run in with hidden gluten, but it’s not. Because of long term damage done by this disease there are a number of additional foods I cannot eat due to malabsorption. Lactose, sugars from some fruits, and any kind of pepper. Additionally, this year at my yearly physical I was referred for a bone density scan and they found due to long term malabsorption I have osteoporosis.

    Finally, you may be wondering what happens if I am accidentally exposed to gluten. Imagine the worst stomach bug you’ve had and imagine it lasting for 2-3 days. Then imagine for the next 3-5 weeks foods you normally enjoy cause you to run to the bathroom. You are no longer able to digest vegetables or things like lettuce completely. This slowly improves and finally resolves over that 3-5 weeks. In my case the antibodies also attack my liver and the inflammation shows up in routine liver blood tests as an elevated ALT. Each exposure sets you back possibly months in healing.

    Celiac is a serious illness and can lead to other autoimmune disease such as multiple sclerosis and type 1 diabetes. It can also lead to intestinal lymphoma and osteoporosis. It’s important that if you have a family member with this illness that you are screened. The test is a simple blood test and the long term impact of living without a diagnosis can be severe.

      1. Thank you and good luck in your journey as well. I keep waiting for my secondary intolerances to resolve, but no such luck yet. I’ve had to give up any idea of eating out in a restaurant that also serve gluten containing food. I am a little jealous sometimes of those other folks I see able to eat out

  9. Celiac disease makes me feel very isolated sometimes to me. After using some medicines like leannclean it feels better. But i was not aware that September 13th is National Celiac Disease Awareness Day. Thanks for make me aware about this.

  10. Thank you for doing this. I am intrigued to look at these faces, read their comments about celiac disease, and realize that so many people are going through what my daughter goes through on a daily basis, and that she is not alone. And, it affects our entire family. Although we live in a small town, where we have to drive an hour and fifteen minutes to get GF groceries and we don’t know any other kids with celiac disease, I can show her this, and say, see….they are like you.

  11. For two weeks I have been reading everything I can on Gluten Free. I had a severe painful itchy breakout that sent me to the doctors. Thankfully she is also a nutritionalist. I’ve had Dermatitis Herpetiformus for over thirty five years and never stayed off of gluten. Dapsone was the medication given and I was down to 50 gm a day. There’s such an uproar in my family right now over me going gluten free. My grown children say I do not have Celiac Disease…. and do not have to be so drastic… I won’t see my doctor for another two weeks. But I am taking her word and staying away from gluten. Do I have Celiac Disease?

    1. First things first…you must be eating gluten for the tests to be remotely accurate. If you plan on getting tested in two weeks, start eating gluten. Sorry.

      Second…why would your family be “in an uproar” if it means possibly improving your health?

      Lastly…I would never try to diagnose someone. It’s possible, but you need to be tested.

      Good luck.

      1. I guess I was a little harsh when saying my family ‘s in an uproar…I haven’t been a good example of taking care of myself in the past. They just don’t think it’s reasonable going completely gluten free as my doctor advised. They are in shock and confused as i was not knowing the severity of my disease. DH is the skin manistation of Celiac Disease. As I’m educating myself and staying GF, hopefully they will get it! Thanks again…

  12. Celiac is the wake-up call to our health that we otherwise ignore, it opened up my eyes to what i spent my time focusing on in my life and helped me realize what I should be more focused on instead, my health, my family, and what truly make’s a person happy.
    If I could turn the clock back and magically take Celiac away, I would in a heartbeat. Yet, I cannot deny how dealing with this has caused me to grow and open up as a strong person to the confusing mess that is human life.

  13. Celiac disease is a very difficult thing to live with and affects people in a very life altering way. It gets a bit funny to see all of the false information and self diagnosing gluten-free advocates that have surfaced over the past few years. I guess having a sense of humor is a great way to deal with it as this video captures quite well. Hopefully this puts a smile on your face and makes you laugh a little. https://www.facebook.com/manchildempire/videos/vb.1589858387893958/1658430701036726/?type=2&theater

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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