If You Have Celiac Disease, You’re Not Alone

There are countless diet plans, from Keto to Mediterranean, DASH to 16-hour fasting. Some come and go like forgotten fads reminiscent of the once-popular jelly shoes, while some are required lifestyle changes like a gluten-free diet. People who have celiac disease, estimated at 2 million people in the United States alone, must refrain from eating gluten or risk becoming sick. This has less to do with weight loss and everything to do with self-preservation.

Celiac Disease is an Autoimmune Disease

It damages the villi of the small intestine and interferes with the absorption of nutrients from the food you eat. Symptoms of celiac disease include diarrhea, constipation, fatigue, joint pain, headaches, rash, weight loss, abdominal pain, and many more. Typically, to diagnose celiac disease, a doctor will first perform a colonoscopy, and if there are signs of celiac disease, the doctor then asks you to eliminate gluten from your diet for a certain period of time to see if your symptoms improve.

So, You Can’t Eat Gluten, or You Get a Stomach Ache. Sounds Pretty Minor, Right? Wrong.

Gluten is a protein found in wheat, rye, barley, and triticale (a combination of wheat and rye). Surprisingly, gluten is like cat hair; you find it everywhere. You find gluten in the usual suspects, like pasta, bread, and crackers, but you can also find gluten in deli meat, beer, soup, chips, shampoo, and, yes, even toothpaste. And for someone with celiac disease, if gluten is not disclosed as an ingredient and it’s ingested, they’ll likely find themselves in acute intestinal pain with an immediate need for the bathroom.

I spoke with Carrie Neidorf about her experience living with celiac disease. Neidorf was diagnosed in 2005 and largely brushed off her diagnosis continuing life as she knew it. But as the intestinal discomfort increased and the fatigue set in, she later committed to a gluten-free lifestyle. And, while she has adapted to this new way of living and eating, it has not been without a few bumps along the way.

“I didn’t know what celiac disease was back then,” said Neidorf. “I was talking to a friend who recommended I see a gastroenterologist because I was having horrible pain after eating, experiencing untimely bathroom visits, and I was exhausted. I was so tired I would have to pull over when driving to see clients.”

Many with the symptoms of celiac disease waive them off as a temporary bad reaction to something they ate or too little sleep due to stress. And even those who are diagnosed sometimes think they can overcome it.

“I did not like the diagnosis. Gluten-free options were awful at that point. Plus, our family lived for bread. I figured I could manage it without managing it, but I was wrong. I finally spoke to someone whose daughter had it. They kept Kosher, so I knew I had to stop making excuses if they could manage both.”

“Basic eating was hard in the beginning. Food did not taste "as good" as it used to. Gluten lurked everywhere, and restaurants were largely clueless. Servers never knew their menus well enough to have confidence in them. Getting unexpectedly "glutened" was awful because my symptoms would come on fast and the pain was intense. Finding a bathroom became an emergency, and I quickly learned not all gas station bathrooms were created equal.”

Neidorf has developed her personal “bible” of area restaurants that have a better handle on gluten-free practices than others but admits the safest place to eat is at home, where her expanding family has adopted the gluten-free lifestyle.

“Cooking, in general, is boring to me,” said Neidorf, “but the internet definitely helps find recipes that are safe or tips on how to work around gluten. When we eat as a family, we eat gluten-free. We have regular bread for sandwiches and cereal, etc., but I don't make two meals.”

In addition to acknowledging that the chance of getting “glutened” decreases greatly when eating at home, Neidorf also admits another reason for not dining out – the cost.

“Everything is far more expensive, from groceries to restaurants. Restaurants tack on a couple of bucks here and there for gluten-free entrees. My bread at home is $6 a loaf and half the size of a standard loaf, so by God, I best stay home and eat it.”

Aside from the physical discomfort one with celiac disease experiences, Neidorf spoke about the emotional and mental toll it can take on a person.

“I battle anxiety to this day, having had a bad experience on a trip. I choose routes where I am familiar with bathroom options. I am prepared. My biggest worry is that I will find myself in a bathroom-less desert, so a former doctor told me to “pack a bathroom” in my car, which conquers some of that fear. I get anxious when carpooling with people I don't know. Discussing your digestive problems with strangers is not fun but probably necessary,” Neidorf conceded.

While the inheritance pattern is unknown, celiac disease tends to “loiter” in families, and if you have celiac disease, your children have a 4 to 15 % chance of developing it too. For people who do not manage their celiac disease, they have an increased chance of intestinal lymphoma and small bowel cancer. Untreated celiac disease has been linked to anemia, multiple sclerosis, and Type 1 diabetes. Even for those managing the disease, regular colonoscopies are in order.

If you or a loved one are experiencing any of the symptoms discussed in this piece, talk to your doctor about getting screened for celiac disease. If you already have celiac disease, know you’re not alone, and there are support groups out there (check out beyondceliac.org). And, the next time you make a subtle eye roll at the gluten-free diet fad, remember, it’s not a fad; it’s a medical prescription for many. Finally, if you’re breaking bread with a friend who has celiac disease, you may want to skip the bread and always discuss in advance what they can and cannot eat.