Celiac Disease: My Journey Into Gluten-Free Living

I sit in an exam room, wearing a scratchy medical gown. My symptoms started six months ago. Abdominal pain. Weight loss. Diarrhea. I saw my primary care provider. Labs were drawn. An abdominal ultrasound was completed. Nothing remarkable showed up. I was finally referred to a gastrointestinal (GI) specialist.

Now I sit, waiting to meet him. My doctor reviews my history and completes a physical exam. He tells me he'll be ordering more labs. I'll conduct a stool test at home. I expect a colonoscopy and an EGD (an upper endoscopy). My attention is caught when he mentions he's checking for celiac disease.

"Isn't that diagnosed in childhood?" I ask him. "That's a misconception," he tells me. "Diagnosis rates are increasing in middle-aged and mature adults. However, it can present at any age."

Celiac disease is an autoimmune disorder, once considered a rare disease, primarily diagnosed in childhood. It's now known celiac can occur at any age. Approximately 25% of all celiac diagnoses are made in adults 60 and older. According to the Celiac Disease Foundation, it is one of the most common genetic autoimmune diseases worldwide. 

About 1% of the US population (1 in 133 people) is estimated to have it. However, according to Beyond Celiac, the overall incidence is increasing. When people with celiac disease eat gluten (a protein found in wheat, barley and rye) their immune system attacks their small intestine. 

The attack blunts or flattens the villi (small finger-like projections in the small intestine that aid digestion), resulting in poor absorption of nutrients, and up to 300 other symptoms.

Diagnosis of celiac disease takes an average of 6 to 10 years. It's particularly complicated due to the many different symptoms people may experience. As reported by the World Journal of Gastroenterology, the most common classic symptoms of celiac may include:

• Diarrhea
• Failure to thrive
• Weight loss
• Bloating
• Iron deficiency anemia

The most common non-classic symptoms may consist of the following:

• Abdominal pain or distension
• Constipation
• Vomiting
• Chronic fatigue
• Irritability or unhappiness
• Joint or muscle pain
• Headaches or balance problems
• Canker sores in the mouth
• Reduced bone mineral density

I was lucky I presented with a few of the classic digestive symptoms. I was quickly referred to a GI doctor and diagnosed within one year.  

This usually involves a screening blood test and an EGD with biopsies (small tissue samples) from your small intestine. An EGD is a procedure in which a small tube with a camera on its end is inserted down your esophagus into your stomach and the upper portion of your small intestine.

For the screening blood test, your doctor will most likely check for an antibody you form towards gluten if you have celiac disease. As people age, they're more likely to test negative on the blood test due to having lower levels of these antibodies. This is one reason why the gold standard in celiac diagnosis is a biopsy from the small intestine obtained during an EGD. 

The procedure allows your doctor to look at your small intestine for damage, take samples and have them analyzed. In addition, some patients may also have genetic testing. In the U.S., about 30% of the general population carries genes that could result in celiac, but only 3% of these carriers develop celiac. What exactly causes people to develop celiac disease remains unknown currently.

If you think you might have celiac disease, it's essential to keep eating gluten until you are diagnosed. If you stop eating gluten before diagnosis, you may have falsely negative results on the blood tests.

My doctor called me a week after my first visit with him. My screening tests were elevated but not to a level that would indicate a precise diagnosis. This is not uncommon among adults. My doctor suspected celiac disease, but I need the EGD to confirm. 

One day after the procedure, my doctor called with the biopsy results. The diagnosis was celiac. My journey towards a healthier lifestyle was just beginning.

Treatment for celiac disease is simple and challenging. The only known treatment is strict adherence to a gluten-free diet. The American College of Gastroenterology states that most patients respond well to a gluten-free diet. Unfortunately, there are no pharmaceutical treatments at this time.

Jenny Levine Finke founded Good for You Gluten Free and is a Certified Integrative Nutrition Coach. Starting the gluten-free diet "is definitely difficult," she says. "You've been eating a certain way your whole life and you're going to have to change. It really does turn your world upside down."

While a gluten-free diet is currently the only known treatment, researchers are actively exploring investigational therapies, including detoxifying gluten in the small intestine, blocking permeability in the small intestine or restoring immune tolerance to gluten.

Once faced with the diagnosis of celiac disease, I realized I needed to figure out what gluten was. Gluten is a protein most commonly found in wheat, barley, and rye. It's mainly in food but may be found in products such as kids' modeling dough, cosmetics, skin and hair products or toothpaste. Reading labels on all products becomes integral to staying healthy with celiac disease.

While not containing gluten, oats have a similar protein — a small percentage of people with celiac cross-react to oats. However, eating oats is controversial in the gluten-free community due to possible cross-contamination with wheat.

Management of celiac following diagnosis may differ depending on your doctor's guidelines. The World Journal of Gastroenterology 2023 published a systematic review of such procedures. Most guidelines recommend some combination of the following:  

• Referral to a dietician following a new diagnosis
• Follow up with your doctor every 3-6 months in the first year, then every 1-2 years after (if stable)
• Follow-up may include a review of your diet and blood work to evaluate for gluten exposure or nutritional deficiencies (e.g., iron, B12, vitamin D)
• A repeat biopsy approximately two years after diagnosis to assess for healing in the small intestine
• Periodic follow-up may also include a bone density evaluation, vaccinations or psychological support due to an increased risk of depression and anxiety.

I was amazed about six months after being diagnosed and settling into my new gluten-free lifestyle. My digestive symptoms resolved quickly. It also turns out the fatigue and joint pain I thought were part of aging were related to celiac disease.

Levine Finke talks about seeing this as well with clients. "A lot of their symptoms go into remission. If you're constantly having joint pain or itchy skin, you might see these things reverse on a gluten-free diet. A lot of people think these things are from getting older, but there might be a disorder, like celiac disease, and your symptoms go into remission, you reverse things."

One of the challenges with celiac is how much the disease may impact your life. Traveling and eating out are probably the trickier things about living with celiac disease.

Levine Finke talks about her own experience. "Who wants to discuss their disease with every waiter you meet?" she jokes. Yet, unfortunately, this is the reality for most people with celiac disease. Unless you're eating at a 100% gluten-free restaurant, you often must disclose your medical condition to the wait staff, chef and others dining with you to eat safely.

"You certainly can still travel, and you can still eat out, but you will have to be more thoughtful and plan ahead," says Levine Finke. For example, "if you enjoy cruising, there is a company called Celiac Cruise that will reserve a dining room for a certain number of guests and the food will all be gluten free. You don't have to ask for a gluten free meal or communicate constantly. You can eat and enjoy."

With travel, Levine Finke recommends finding a rental home where you can cook some of your meals. "I usually eat my breakfast at the rental and pack my lunch. Then, I go out to dinner and will usually research the city ahead of time and make reservations."

If you're researching where to eat, a variety of apps are available for people with celiac to make eating out easier. Find Me Gluten Free is the one Levine Finke mentions (which I also use). You can search for a restaurant in a geographic area and read reviews written by others who eat gluten-free.

A diagnosis of celiac disease does not mean your life is over. Instead, it means you can embrace a new health journey and experience a new way of living. Gluten-free food can be good for your health and delicious too.

Like me, you might be surprised that things you attributed to aging were undiagnosed celiac. You may develop a new community of friends and people to eat with. Whatever your situation safely, please know you're not alone.

Follow up with your doctor, work with a dietician to learn how to eat and find a celiac or gluten-free support group in your community. Be gentle with yourself as you transition to a healthier new you.

Rachel Ostrander is a freelance writer and registered nurse practitioner based in Washington. She currently writes on a wide range of health topics ranging from GI health to cardiovascular disease to functional medicine and beyond. Rachel’s the author of the book Nurse: A Memoir. You can find her here. Read More