Three million people in the United States live with celiac disease, according to the University of Chicago Celiac Disease Center. The autoimmune disorder, which causes damage to the small intestine when gluten is ingested, often gets misrepresented as a simple dietary restriction. But it’s not that simple.

The Mighty and the Celiac Disease Foundation, decided to take an opportunity to spread some awareness about the often misunderstood condition. We asked readers affected by celiac disease what they wished others could understand about the condition. This is what they had to say.

1. “Just because you look fine on the outside doesn’t mean that you are on the inside.” — Lois Abbott

celiac disease meme: Just because you look fine on the outside doesn't mean that you are on the inside

2. “We can still eat food. Not everything contains gluten. Just the nice food.” — Clare Walsh

3. “We are not choosing this for fun. It is serious and a medical necessity for us. We did not jump on the bandwagon for a new diet.” — Ali Spina

4. “I wish people wouldn’t take it personally when you can’t eat their food. Even if they try to make something gluten-free, it’s likely contaminated by their cooking utensils, oven, grill or spices. I certainly appreciate it, but I always tell people not to go to the effort because I cannot eat it.” — Tara Pollman

5. “It’s more than a tummy ache when I ingest gluten.” — Sherry Heimer Cory

celiac disease meme: It's more than a tummy ache when I ingest gluten.

6. “It’s not the same thing as a food allergy. It’s an autoimmune disease that affects every part of the body.” — Angela Stickman

7. “As hard as it is for adults with celiac to be around non-celiac people at a party or family event, it’s even harder for kids. My daughter is having to grow up feeling like she is missing out. Even family members don’t understand that when you eat fancy dessert in front of her and offer her some packaged gluten-free item in its place, it still makes her feel bad.” — Sara Laferriere DeBeck

8. “Flare-ups are unpredictable and can happen at any time.” — Mary Ellen Poll Sarbaugh

9. “We want to eat cake, trust us, but we can’t.” — Angela M. Burres

celiac disease meme: We want to eat cake, trust us, but we can't.

10. “The financial impact can be a huge burden. Having no choice but to purchase food that is sometimes triple the cost of its non gluten-free counterpart isn’t always easy. You pay the price and get less food for your money.” — Wendy Rose

11. “I’m not trying to be a flake. Sometimes I might have to cancel because my stomach hurts. It’s not like I planned on getting sick for 10 days straight…” —Marsha Covert

12. “I’m not crazy.” — Tonya Renee

celiac disease meme: I'm not crazy.

13. “It can cause other illnesses.” — Missy Shank

14. “While I really don’t miss the things that made me sick and while I’ll never ask for special treatment, it would be pretty awesome if people tried a little bit every once in a while to include foods I can eat at special events. When it does happen I’m over-the-moon grateful for it.” — Karen Griffith

15. “No, my daughter won’t ‘grow out of it.’” — Jennifer Wright

16. “You don’t have to have symptoms to have it.” — Sharalyn Anderson

celiac disease meme: You don't have to have symptoms to have it.

17. “I actually gained weight after adopting a gluten-free diet… There is plenty of junk food that is also gluten-free.” — Yogi Samantha Bellerson

18. “I go through a lot of toilet paper.” — Spencer Lee Robertson

19. “There is no pill that I can take to make it go away.” — Lisa Touzet

20. “Yes, that little teaspoon of flour you used to thicken the stew will make me sick. And no, I can’t just pick out the croutons.” — Alicia Bertolero

21. “We are not just picky eaters.” — Annamaria Duggan

celiac disease meme: We are not just picky eaters.

22. “Giving me gluten is the same as giving someone food poisoning. It is just as bad for me if not worse, because the effects are longer. While a mild case of food poisoning lasts a couple of days, for me it is a week or two.” — Hardlybored

23. “Gluten intolerance, or celiac, isn’t a fad diet.” — Annabella Couto

celiac disease meme: Gluten intolerance, or celiac, isn't a fad diet.

24. “Gluten-free food isn’t as bad as you think.” — Madeleine Wolfe

25. “Before you tell me who will be cooking our food, I need to know where the bathrooms are. And where the bathroom spray is.” — Henny Kornbluh-Kupferstein

26. “Having to explain celiac and the seriousness of the disease to family and friends is challenging. When someone is talking about it, please try to be understanding.” — Yaya Ramirez

celiac disease meme: Having to explain celiac and the seriousness of the disease to family and friends is challenging.

What do you wish others could understand about celiac disease? Let us know in the comments below. 

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I feel I hold it together pretty well, overall. I’m overwhelmed often, and sometimes I’m depressed. It’s not that I feel this is a burden; I consider it a blessing and my daughter is a joy. It’s just a lot of tough stuff to deal with sometimes. While most people are preparing their children for college, I’m just hoping and praying and doing everything I can so that my child survives long enough to have that option.

Sometimes, I get the feeling that’s viewed as being dramatic or negative, or that I’m trying to one-up someone. I’m not. Just like anyone else, I turn to my friends to talk about things when I’m in need of a little moral support. It just so happens that a lot of my life revolves around the effects of transplant, life-threatening situations and scary statistics. If it’s overwhelming, tiring or frustrating to hear about sometimes, I’m sorry. I understand. I live it. I feel that way, too.

I often feel like a failure or inadequate by comparison when I see moms who seem to have it all, do it all, know it all and who can balance it all, seemingly effortlessly… all with a smile on their faces. Meanwhile, I struggle to get out of bed some mornings, my house is a mess, my laundry is piled in a corner and I’m turning on the TV instead of reading to my kids so I can try to find an hour here or there to catch up on the work I’m so behind in because I’ve been running back and forth to the hospital so much. So I feel like a fraud when people assume I’m an awesome super-mom just because my child has special needs. Who, me? I’m barely holding it together.

I may not think to ask how you’re doing, or what’s going on in your life… partially because, I assume, my friends and family would tell me if they want me to know or if they need someone to talk to and mostly because, yes, I am selfishly caught up in my own life at the moment. I’m sorry. I’m not Super Woman. I’m not even a great friend or a great mom. But I do the best I can and, if you need a friend, I’m here and I won’t judge or compare because we all have our own stressful lives, and yours is no exception.

As the mother of a child who comes with a multitude of additional challenges that go above and beyond the norm and, I think, speaking for others in my situation: All we need from a friend or family member, whether they live in our world of medical or behavioral challenges or not, is simply the acknowledgement that it’s really freaking tough sometimes.

We don’t need to be told we’re “super” or put on a pedestal. We don’t need to feel “normal” because our lives are anything but, and to deny that is to deny our right to feel the way we feel about it. We aren’t being negative, dramatic or trying compare our lives to others or compete. We just want to talk to our friends about what’s going on or have a shoulder to lean on, like anyone else does. It just so happens that transplant, life-threatening situations and the constant, overwhelming stress associated with those things are huge parts of our lives.

We’re being realistic. We have seriously, chronically ill children. We don’t consider them a burden, rather a joy, but we are often overwhelmed and even depressed or exhausted trying to cope with it. Anyone else in the same position would be as well.

We’re not failures. We’re not superheroes (our kids are). We’re special needs parents.

Jasmine smiles at her baby, who's looking up at her.

A version of this post originally appeared on My Unstill Life.


Doctors rolled my 23-year-old son and me, each on a separate gurney, down the hospital hallways. We were on our way to the operating room, both of us, side by side, looking at each other and knowing no words needed to be spoken.

I awoke six hours later in recovery, and as soon as I was able, asked how my son was.

“He’s doing extremely well; all his vitals are normal, and he’s coming out of anesthesia. Not to worry, he’s an amazing young man!”

A long, deep exhale of relief left my body. The surgeon approached me and said everything had gone extremely well.

I just wanted to see my son. I wanted to see him with my own grateful eyes and see for myself that he was OK. After all, he too had been through a long surgery. He was young, healthy and strong, and I had no doubt he would be just fine, but you know moms — we have to see for ourselves that our children are safe and sound.  That never changes, no matter how old they are.

He changed my life forever that day. He made the ultimate sacrifice to save me from a life full of fatigue, nausea and diet restrictions. He saved me from feeling like I wasn’t really living, that I was instead merely existing. He saved me from countless hours of receiving necessary medical treatment every other day, four hours a day, for years to come. 

On May 15, 2007, my son donated a kidney to me.  

The wait on the National Organ Donor List was five to eight years. My son came to me and told me he wanted to be tested to see if he was a match. I cried. I told him I didn’t want him to take on my burden; I wanted him to live his life. I assured him I would be OK as long as I continued with my dialysis.

I will never forget the words he said.

He took my 98-pound frail body up into his arms, wiped my tears away and said, “It’s going to be OK, Mom.  You gave me life, I can spare you a kidney!”

His eyes were twinkling. Wasn’t it just yesterday that I was holding him in my arms, rocking him, telling him everything was going to be OK after he’d taken a spill on his bike?

Today, I’m healthy as can be. I live a normal and happy life at 59. He’s happy and healthy as well. We always had a special bond, but now it’s even stronger. We celebrate together each and every year.

We do as much as we can to bring awareness to others about organ donation. It truly is giving someone the gift of life. Great strides have been made since the time we had our operations — one being that donor kidney can be removed laparoscopically, leaving virtually no scar and offering a shorter recovery time. The test to determine if someone is a viable candidate is done with a blood sample. If the match is good, there’s a screening process for the donor to ensure they’re fully aware of what they’re going to experience physically. They’re able to ask any questions they may have about the procedure. It’s much simpler than most people realize, and this is why it’s so important to bring awareness to this subject.

I treat this kidney as the gift. I eat well, exercise and most of all, I live my life in the light of gratitude.  I’m grateful I can lead a full, normal and healthy life, but mostly I’m grateful for a son who loves his mama so much, he literally sacrificed a part of himself to save her.

Bless him and all those who are living donors or are signed up to be organ donors, for in my opinion, no greater gift exists than the gift of life. I’m living proof. For more information on organ donation, head here.

The Mighty is asking its readers the following: Describe a moment you gave or received a gift that touched your life in a special way. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Multiple sclerosis (MS) is an “unpredictable, often disabling disease of the central nervous system” thought to affect 2.3 million people worldwide, according to the National MS Society. The condition presents itself in a variety of ways, so much so that you may not realize a loved one has it.

To learn more, The Mighty asked its Facebook readers and contributing writers to tell us the one thing they wish others could understand about MS. Here’s what they had to say:

1. It’s a disease most people wouldn’t recognize.” — Jason Tanner

2. “For me, MS means facing the unknown every day, wondering and worrying if a new feeling or sensation is a normal thing or an MS thing. I don’t want this disease to run my life.” — Jessica Adrianna

MS1 copy

3. MS can go undiagnosed/misdiagnosed. If it seems someone you love is quietly enduring symptoms, please encourage them to speak up.” — Angelica Catalano, senior producer at The Mighty

4. “So far, the embarrassment has been tough. Embarrassment when I’ve wet myself, when I fall over, when I can’t participate due to the wheelchair not fitting wherever I need to go, when I need help taking care of my own baby.” — Tristen Wuori

5. “It’s not the end of the world! There are lots of things people with MS can do to improve their health through diet and lifestyle choices.” — Rachel Hogg

MS2 copy

6. “I wish people understood, not just for MS but in every situation in life — if I did not ask for help, don’t! That’s interfering, not helping. I stumble a lot, my balance sucks; adding another person’s unpredictable movement by holding my arm makes it way worse. If, if, I need help, I will ask.” — Tim Schaub

7. Every single person with MS has his or her personal combination of symptoms. It depends on where the inflicted parts of the brain and/or spinal cord are situated. So if you ask people with MS about it, you will get a huge variety of answers… When you deal with someone having MS, ask questions about how he or she is today or right now. Never pity him or her, just deal with him or her naturally, like you would with anybody else.” — Annettte Hillringhaus

8. “The wobble only adds to my swagger.” — Jason, from Nadine Friedman-Roberts’ photo series, “Whisky, Waterfalls, and a Radio Preacher.”

9. “Every setback and every challenge can make it feel like we’re back at square one, but I constantly remind myself to make the choice to thrive.” — Stephanie Butler

MS3 copy

10. “[MS is my] frenemy because, in hindsight, there are lessons I wouldn’t have learned without [it] entering my life.” — Jenna Blackwood

11. “I may be walking slower, but I’m racing.” — Jason DaSilva

12. A life with multiple sclerosis is not a death sentence.” — Daryl H. Bryant

MS4 copy

13. “No, I’m not resting. I’m living a full life within the abilities I have. Having multiple sclerosis is not within my power, but what is within my power is refusing to let MS gain the upper hand.” — Cathy Chester

14. “I am not multiple sclerosis, and even with it, I can accomplish so much.” — Samantha Stambaugh

15. “I can choose to be miserable, or I can choose to do something good with this.” — Kaleigh D’Anna

MS5 copy

Related: Self Portraits Show Disability in a Way It’s Rarely Seen: Honestly

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Dear Husband,

First let me know acknowledge the fact that I don’t acknowledge you and your hard work nearly enough. I hear those conversations you have with our kids reminding them to thank me for changing their clothes and rushing home to make those cupcakes for school tomorrow, even as our son lies in a hospital crib and I’m stressed and frazzled. My yoga pants are stained and in desperate need of a washing, but first I’ll wash the coveted teddy and the precious blankie, and you’ll prompt our kids if need be for an extra hug. I feel you tiptoe out of bed and change that 2 a.m. diaper so I don’t wake to a bed change when the TPN and tube-feeds have caused a bed flood and require an immediate change from pant to pink pad and so on. I’ve heard your quiet sobs and prayers in your attempt to keep it all together and be my rock, but still in the silence of the 4 a.m. med time, I’ve heard you crumble. I see you pick up on my facial expression during rounds; you know my body language so well that before I can raise my concern you step in. Because you know it’s been a tough day, and my voice is shaky, so you’ll speak up and share my thoughts even though I have yet to vocalize them.

I know I’ll never know what it means to be Dad, to keep it all together. It seems to me that you spend each day picking me back up and letting me lean on you or cry on you or kick you with my unintentional misdirected frustrations of the day. Yet you smile. You kiss my forehead. You show me how to carry on. I get thanks and praise so frequently. So often it’s misdirected. You see, the greatest secret of my strength and perseverance is the comfort of your arms, the knowledge of your unending love.

vanessa

You learned so early on in this journey that your job first and foremost was support me, giving me whatever I needed by whatever means necessary — and that could change in a moment’s notice. You rose to that challenge. You continue to rise to it daily. Even when I don’t deserve it, even as I push you away, you stand tall, never failing, always loving. Ready to support me with a ridiculous dance in the PICU, a dinner date, a hug, a coffee, a shower with a moment of peace, picking up the slack with the girls’ homework and busy schedules, dragging me up off the ground. You fill in where I leave off.

Thank you. Thank you even when I don’t say it. Thank you even when I don’t show it. Thank you even when I act as though you’re nothing more than an annoyance or distraction. You’re always what I need when I need it. You’re always the reason I’m strong. You’re the reason I can fight for our boy.

With all my heart and deep gratitude,

Wife

vanessa2

 The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Thank you!

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In middle school, I started losing a lot of weight. It came out of nowhere. I didn’t change my diet, I wasn’t exercising more than usual and to be honest, I probably spent most of my time on the couch watching TV. Still, I lost about 20 pounds in only a month. I was always a chubby kid — healthy, but never super skinny. Then all of a sudden when I magically started losing weight, I dropped from a size 5 to a size 1.

To be honest, I was pretty excited about it. It’s a good thing to lose weight, right? People would comment on my weight loss but always positively. I don’t blame any of them, of course. They had no idea what was really going on.

Because the truth was, while I was pleased with the weight loss, I was ignoring a variety of symptoms that had begun popping up. Loss of appetite, nausea, vomiting, abdominal pain, diarrhea — all symptoms I experienced and ignored for a long time.

Maybe it was a form of denial, or maybe I was just scared, but I know the effect the symptoms had on my physical appearance influenced my reluctance to find out what was wrong. It’s so bizarre to think about how from the outside I probably looked great, while on the inside I was anything but. On the inside, I was slowly deteriorating. 

Eventually, when the symptoms became so severe that I had to go to the doctor, I was diagnosed with Crohn’s disease, a type of IBD, or inflammatory bowel disease. It’s also an autoimmune disease; the inflammation is caused by the immune system attacking the digestive tract. Your body gets its nutrients through digestion and Crohn’s messes all of that up, so you don’t absorb nutrients as well as you should. This meant that my weight loss was not only attributed to loss of appetite, but the fact that I was actually malnourished. It‘s terrifying when I think about it now. Here I was, so thrilled to be losing weight, and it was because my body was actually lacking what it needed to maintain a normal body weight. The doctor was surprised at how severe the disease had become. Looking back, I wonder if it was my hesitation of seeking treatment that let it become so bad.

A major part of my recovery was g aining weight. With the help from medications, I did. I was put on a drug called Prednisone and gained back every pound I lost while I was sick. One of the side effects of the drug is called “moon face,” which causes your face to swell to a round, or moon, shape.

It was a really emotional time for me. My previously sky-high body confidence had shattered to a million pieces. It took a long time, I’d say nearly a year, before I was really healthy again.

Today I’m a size 8, and I’m really happy about that. I actually hope I’m never a size 1 again. The last time I was a size 1 was the worst time of life. Size 1 me was not healthy me. 

Now as a size 8, I’m happy and healthy, and I couldn’t care less how much I weigh or whether people think I’m fat or skinny. All that matters is is how I feel.

A version of this post originally appeared on Syracuse University’s Active Minds blog. 

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

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