15 Women Describe What It's REALLY Like To Have Celiac Disease

"The day that I had my colonoscopy was the best day of my life!"

April 8, 2017
celiac disease real women
Photograph courtesy of Karina Rabin; Lauren Murphy; Malory Vague

If it seems like everyone in your life is suddenly going gluten-free, you're not imagining things. In fact, a study by the journal of the American Medical Association Internal Medicine found that the amount of Americans who eat gluten-free, despite not having celiac disease—the autoimmune disorder where ingesting gluten can lead to damaged intestines, nutritional deficiencies, infertility, and nervous system disorders, according to the Celiac Disease Foundation—has more than tripled since 2009. While some seem to believe eating gluten-free is a weight loss tool or a lifestyle choice, those with celiac see things differently. For them, staying away from gluten isn't simply to avoid bloating and stomach pain. It's a critical health issue.

To get around some of the misconceptions about the disease, we asked 15 women what it's really like to have celiac disease—and how it impacts their day-to-day life.

celiac disease effects real women lauren murphy
1/15 Photograph courtesy of Lauren Murphy
"Celiac symptoms affect every single part of your body"

"They're not only physical, but mental as well. Celiac is associated with depression, among many other things. It can also cause infertility, which is a serious issue for women and something I worry about because I'm getting married this year and would like to start a family in the next few years. My stomach issues have improved immensely since going gluten-free, but I'm what they call a 'silent celiac' or 'asymptomatic,' which means if I eat gluten I don't have immediate symptoms. I believe this is both good and bad, because, on the bright side, if I go out for the night or on vacation and I experience cross-contamination or eat a gluten-filled food, it won't totally ruin my night. But eating anything with gluten will still cause damage to my villi, as well as long-term issues." —Lauren Murphy

celiac disease effects real women emily lyons
2/15 Photograph courtesy of Emily Lyons
"I was so sick of constantly hearing I was too skinny"

"I used to eat a ton of food everyday without ever gaining weight—pizza, bread, cookies—and always hovered around 104 pounds. I battled stomach problems daily, always caught colds or the flu, and was constantly exhausted. I could sleep 12 hours and still have to drag myself out of bed. The majority of my friends and family, and even my doctor, thought I was making a lot of it up or that it was mental, which spiraled me into a depression.

"I was so sick of being tired all the time, feeling like crap, and never knowing what was going on. I didn't find out I had celiac until I was 30. I had to seek out a private medical care, which cost me $5,000 for a day's worth of test results, but determined I was anemic and likely had celiac. I wasn't familiar with the disease and, with all the gluten-free diets everywhere, I assumed it was merely a title. But a week after changing my diet, my migraines went from two to three a week to maybe one every three months. The daily irritable bowel syndrome also stopped. I still have exhaustion, but am working on that as I build back my iron supply. " —Emily Lyons

Related: 8 Things That Happen When You Stop Eating Bread

celiac disease effects real women meaghan
3/15 Photograph courtesy of Meaghan Donohoe
"I thought stomach pains after every meal were normal"

"Before my diagnosis, I often ate the normal gluten-full foods like crackers, toast, beer, and pasta, and experienced a sour stomach, gas pains, and irregular trips to the bathroom. It all became normal to me and I thought I just had a sensitive stomach I'd have to live with. That is, until I attended a friend's bachelorette party and indulged in lasagna, bagels with cream cheese, and cake. The next day, I felt so sick to my stomach I called out of work and immediately made a visit to a gastroenterologist. He was skeptical about my dairy assumption and felt it was more likely to be a parasite or celiac. He did a blood test and, sure enough, I'd been living with full-blown celiac disease and had no idea. They confirmed the diagnosis by performing an endoscopy, which showed damage to my small intestine caused by eating wheat, barley, and rye on a regular basis when my body couldn't handle it. That same day I had my last gluten-full beer and bagel!" —Meaghan Donohoe

celiac disease effects real women michelle caruso
4/15 Photograph courtesy of Michelle Caruso
"I have a panic attack if I think I ate something that contained gluten"

"I saw a total of five different specialists over the 27 years before I found out I had celiac. Each test came back negative. I just wanted them to give me some sort of diagnosis—anything that would explain why I was so tired, bloated, depressed, and anxious; why the enamel on my teeth had completely worn away; why I had bad acne; why I had terrible canker sores in my mouth; why I had to run to the bathroom immediately after eating anything. It wasn't until I saw a gastroenterologist and had a colonoscopy, upper endoscopy, and blood tests that it was determined I had celiac. 

"I jokingly tell people that the day that I had my colonoscopy was the best day of my life! But it was honestly such a relief to find out what was wrong with me after being sick for so many years. I now have to watch what I eat, check products and restaurant menus to make sure they don't contain gluten, and bring my own food to friend's houses, but I do it because I never want to go through what I experienced before my diagnosis." —Michelle Caruso

Related: 7 Totally Not-Dumb Poop Questions You've Been Too Embarrassed to Ask

celiac disease effects real women linda smith
5/15 Photograph courtesy of Linda Smith
"I can't do anything without considering my celiac disease"

"Taking a road trip? Where do I get something to eat that's gluten-free? The same goes for traveling abroad, flying on an airplane, being in the hospital, or even attending a wedding. Friends have cooked for me but they only put 'a little bread crumbs' in the meatballs. I can't even have 'a little,' so do I say anything? Did that dip get cross-contaminated with a flour tortilla? Even going to church and having communion leads me to the question of whether or not it's gluten-free. I've completely let go of all opportunities to be spontaneous—I have to plan for all my meals. The most important question I've had to get comfortable with asking is 'Where is the closest bathroom?'" —Linda Smith

celiac disease real women effects karina rabin
6/15 Photograph courtesy of Karina Rabin
"My life is full of awkward food conversation"

"Luckily, there are more gluten-free options available than ever. But while grocery shopping has become easier, dining out hasn't. Most wait staffs aren't familiar with gluten-free, and I often have to read the entire menu and have the waiter run to the chef with what seems like 40 questions. When I get invited to a party, I have to eat before the party because the host doesn't consider someone might be gluten-free. It's very embarrassing that I have to ask the host what they're serving and then, when I mention why I'm asking, they always feel bad that they can't feed me. I just recently went to a playdate for my child and the host, who knows I'm gluten-free, mentioned she was serving bagels for breakfast. I had to stop at the store before the playdate to get my own bagel, because otherwise I wouldn't enjoy my time as mush as the rest of the people. 

"Before knowing I had celiac, I was always in pain and constantly bloated. It was difficult to go out with friends because my stomach hurt so bad—or, I'd be forced to go home early because my stomach hurt. I was uncomfortable with the way I looked, was forced to wear baggy shirts to cover my stomach, and on several occasions was asked if I was pregnant because of my belly." —Karina Rabin

Related: 8 Foods to Eat Tonight to De-Bloat by Tomorrow

celiac disease effects real women celina jean
7/15 Photograph courtesy of Celina Jean
"I was constantly sick, and no one knew why"

"Before medical school, I was frequently ill. I had chronic bronchitis, acne, canker sores, was bloated, depressed, and constantly foggy. I had to work out for two hours while I was an undergrad to clear my head enough to be able to study. I was often too tired to hang out with friends and instead slept on the weekends. But it was after a skiing injury when doctors started paying attention. They couldn't figure out why I was so sick (and continued to get sicker) after a physical injury, so I was put on more and more drugs without any explanation as to why. The injury, combined with all the medications and steroids I took, pushed my body into a state where I could no longer even attend school or work. 

"After several tests to determine whether or not I had celiac all came back negative, I insisted on an endoscopy and biopsy, which resulted in my diagnosis. I went from spending thousands of dollars a month on medicine to several hundred on food. I felt so good after changing my diet, along with taking supplements, juicing, and doing yoga, that I went back to school to get my masters in nutrition." —Celina Jean

celiac disease real women rebecca knowles
8/15 Photograph courtesy of Rebecca Knowles
"I thought I was having a heat stroke in the middle of Disney World"

"When I was younger, I was always in the bottom percentile of weight and height for my age range, but had a huge appetite. I often complained of a stomachache after eating, but I didn't have identifiable symptoms until high school. I was traveling with my high school musical theatre troupe to perform in Disney when I began to feel extremely hot, started sweating, had the chills, and felt extremely lethargic. At first I thought I was sick or had the flu, but it turns out it was something more. Apparently, theme-park food is basically 100 percent gluten—from the chicken fingers, to pizza, to pasta. When I returned home from the trip, I slept for about 20 hours straight, and after I woke up my mother drove me straight to the doctor's office. When I was told I had celiac disease, I had never heard of it before. 

"If I ate gluten now, after being on a gluten-free diet for over a decade, I'd experience the side effects for weeks or even months. My body reacts to it as a poison, so the villi in my intestines stop being able to absorb nutrients properly while gluten is in my system. My brain becomes fuzzy and my emotions go bonkers. I become nauseous, dizzy, exhausted, and start to feel like a rock is in my stomach. After about two hours, I become violently ill until most of the gluten is out of my system."  —Rebecca Knowles

celiac disease effects real women lillie pragnell
9/15 Photograph courtesy of Lillie Pragnell
"It's incredibly frustrating that other people don't understand the disease"

"I was in a restaurant and was told by the chef that pearl barley was gluten-free—when I was adamant it wasn't. If restaurants and eateries don't know what ingredients and meals are genuinely gluten-free, many celiac sufferers can be affected. On the rare occasion I've consumed gluten, my stomach can swell so I look pregnant and I can stay bloated for up to three days before it's eradicated from my system. Long-term effects include my body's ability to absorb major minerals, such as calcium and iron. Not getting enough of these can lead to osteoporosis, fertility problems, and anemia. My diagnosis made me realize how critical it is to fuel your body right, which is why I chose to train as a nutritionist so I can educate others on the importance of a healthy diet." —Lillie Pragnell

Related: 13 Meals That Are Naturally Gluten-Free

celiac disease real women effects amina altai
10/15 Photograph courtesy of Amina AlTai
"My migraines were so severe that I'd pass out from the pain"

"I experienced migraines since the age of 8, but it wasn't until my early twenties when they became so frequent and severe that I'd pass out from the pain. Determined to move through this, I went to seven different doctors before I was diagnosed with celiac disease and hypothyroidism. Eating out can be challenging—especially if the place you're eating doesn't take food allergies seriously. I've had one too many ugly dining experiences resulting in major cramping, vomiting, and migraines. My husband always laughs because on our second date, he took me to a Chinese restaurant where they promised there was no soy sauce in the dish and, lo and behold, there was. I had to run from the table to the bathroom to throw up. But that's a dramatic example. Having celiac disease and living well requires a level of due diligence at all times. I can't be spontaneous and eat whatever I want because I know the impact." —Amina AlTai

celiac disease real women lorin konchak
11/15 Photograph courtesy of Lorin Konchak
"I got used to the sound of loud growling noises coming from my belly"

"Since high school, I always had a general discomfort when it came to my stomach—cramping, tightness, abdominal pain—but it became more severe last summer. My husband insisted I see a gastroenterologist, who diagnosed me with celiac disease. At first I didn't believe him, and thought people who said they couldn't eat gluten were simply making it up. He assured me my condition was very serious and that I could be looking at long-term health complications if I didn't start a gluten-free diet immediately. Since then, I've felt amazing. I had no idea that this is how a normal person is supposed to feel! I have no more discomfort and cramping in my stomach and my energy and stress levels have improved tremendously. The perk of everyone finding the gluten-free lifestyle so 'trendy' is now there are so many products I can substitute into my diet."  —Lorin Konchak

celiac disease real women ashley samek
12/15 Photograph courtesy of Ashley Samek
"My favorite food turned out to be my kryptonite"

"I worked at a pizza restaurant where employees could eat for free after work. So, needless to say, as a young and broke college grad, I lived on pizza. No wonder I felt lousy! I experienced random symptoms like cuts in the creases of my mouth, bumps on my forehead along my hairline, severe bloating, etc. I could also sleep for days if society let me. Once I fell asleep in the pool during lifeguard training! At that point I thought I had narcolepsy, so my family doctor prescribed me Adderall, which worked great at keeping me awake and engaged for class and life, but wasn't really treating the root of the problem.

"After my diagnosis, I pretty much lived on yogurt, peanut butter, fruit, granola (before I knew oats had to be labeled gluten-free to be safe—classic rookie mistake), eggs, and sweet potato fries. After about a year of checking every label at the grocery store and many trials and errors, my diet was much more balanced. My parents still struggle with the concept. My dad will ask silly questions like whether or not milk or carrots have gluten, but I love them for trying." —Ashley Samek

chandice probst celiac disease
13/15 Photograph courtesy of Chandice Probst
"I was sent to the ER countless times for what they said was bad stomach ulcers"

"After getting fed up with the recurring visits and the painkillers doctors were prescribing me, I demanded a celiac test after my mother was diagnosed [celiac disease runs in families]. For me, the diagnosis was an answer to my prayers. I'd been sick for so long that I just wanted to know what was wrong with me.

"For this reason, I've always viewed my celiac lifestyle as a good thing. It truly keeps me happy and healthy, but it's tough in the sense that you can easily feel alienated. Food is a huge part of our culture, so I always have to be on the lookout for hidden gluten, both in products and at restaurants. It's hard at first, but I highly encourage others to jump in feet-first and learn how to cook delicious gluten-free foods. Be an advocate and stand up for yourself while also being kind so people want to learn more about it." —Chandice Probst

celiac disease real women malory vague
14/15 Photograph courtesy of Malory Vague
"Being gluten-free forces me to deal with a stigma that's not deserved"

"With gluten-free turning into a fad diet, servers roll their eyes when you ask for gluten-free pasta. 'Is it an allergy or preference?' they ask. I always wonder to myself, who wants to eat soggy rice noodles as a preference? I also started trying to explain to people that celiac really isn't an allergy at all—it's an autoimmune disorder—but decided that was too big of a battle to take on. It's also expensive. Going grocery shopping with my roommates in college proved that. They could get a $2-loaf of bread and mine was $7, their take-out pizzas cost $5 split between them while mine cost $16. It certainly didn't make living on a college budget any easier.

"However, the options for gluten-free folks have gotten a lot better and easier to come by. In part, I thank the people who went along with the gluten-free fad diet because they created a demand for more and better gluten-free products. I'm hoping, as more brands go gluten-free, the cost will come down more and it will become easier for young people with celiac to enjoy food." —Malory Vague

celiac disease real women jenny gustafson
15/15 Photograph courtesy of Jenny Gustafson
"My hangovers lasted for DAYS"

"It's amazing to actually know you have celiac disease, because at that point you're able to control how you feel for once in your life. Before I knew about my diagnosis, I either wouldn't go to the bathroom for weeks at a time or went 20 times a day. I was bloated after every meal and had hangovers that lasted for days (that's what happens when you drink beer without knowing you're allergic). I also slept too much, had several vitamin deficiencies, and was facing latent depression because I always felt so poorly. On the flip side, finding out that just eliminating gluten means feeling great almost 100 percent of the time (give or take accidents when I don't ask enough questions). I don't feel bad for myself at all. I'm just thrilled that I typically feel well." —Jenny Gustafson

The article 15 Women Describe What It's REALLY Like to Have Celiac Disease originally appeared on Women’s Health.

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