In 2016, after two surgeries and 20 weeks of chemotherapy for Stage II breast cancer, I felt as if the toughest part of my treatment was finally over, and I was making plans to restart my life. I even bought tickets to a Billy Joel concert. But a few weeks later, I had a terrible bout of diarrhea. I assumed it was food poisoning and was careful what I ate for the next few days. But something still felt off.
Weeks passed, and I continued to have diarrhea as well as nausea and acid reflux; I dropped 10 pounds in just a month. One of the drugs I was taking to keep my cancer from returning was new, and I had been told that one side effect could be diarrhea, so I asked the doctor to remove it from my protocol. He encouraged me to stay on it, and I reluctantly agreed. I focused on hydration and healthy eating, but I was having difficulty keeping down any food at all, and I lost even more weight. I had to miss the Billy Joel concert.
More hospital stays, but no answers
On Super Bowl Sunday, I was at a friend’s baby’s birthday party. Though I had been feeling fine, as I stood up to greet friends, the room started spinning and I fell to the ground. My friends drove me to the hospital, where I was kept overnight for dehydration and low electrolytes. After that, my cancer doctor took me off the new drug, but even that didn’t help me feel better.
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My health continued to decline, and I felt as if no one was helping me get better. My doctor referred me to specialists, but their next available appointments were weeks away. I had a second hospital stay and received multiple hydration infusions over several weeks. I had numerous lab tests and scans. Several specialists each saw me only once. Each focused on one potential explanation (kidney infection! gallstones!), and when test results disproved their theories, they didn’t follow up. I felt dismissed.
A surprising yet simple solution
During my cancer treatment, I had been very confident about a positive outcome. This was different; I didn’t know how—or whether—I would get better. Each day I was sicker and more scared. In three months, I lost 40 pounds. I wasn’t able to go into work. I could no longer even walk around the block. I was terrified.
Finally, my doctor referred me to a gastrointestinal nutritionist who hospitalized me to get some answers. I was placed on IV nutrition, and once I was stabilized, the doctor performed an endoscopy and a colonoscopy. He came up with a surprising diagnosis: I had developed celiac disease. The crazy thing is, if I had just come in off the street with these symptoms, a doctor likely would have tested me right away for celiac, an auto immune disease in which eating gluten damages the small intestine and can cause severe diarrhea. But because of my recent history with breast cancer, I feel as if the doctors were looking for something else and my complaints about my gut symptoms weren’t being heard.
I started a gluten-free diet as soon as they told me I had celiac, and I felt better immediately. Celiac was a life-altering diagnosis for me—I have to plan my meals carefully and always carry around my own snacks. After a year of eating almost exclusively at home, I found restaurants where I could eat safely. I am now six years cancer-free and feel great. And it took two years, but I did finally get to see Billy Joel!
Could you have celiac disease?
“Celiac disease is an immune response to the protein in wheat, barley, and rye—we use the term ‘gluten’ for all three,” explains Joseph Murray, M.D., a professor of medicine at the Mayo Clinic College of Medicine. For people with celiac, eating anything with gluten in it can kick off a reaction that causes damage to the small intestine. This can stop the body from absorbing crucial vitamins and minerals, and left untreated, it can increase the risk of conditions including type 1 diabetes, heart disease, and osteoporosis, Dr. Murray says.
Celiac affects about 1% of the world population, though less than one-third are properly diagnosed. Sometimes it shows up in children; in other cases it is triggered much later in life, says Dr. Murray. While there is a genetic factor in celiac, no one really knows the exact cause, says Dr. Murray. For some, he says, it may be triggered by severe gastrointestinal illness or, rarely, taking certain medications.
- Diarrhea Weight loss
As of now, the only treatment for celiac is a gluten-free diet. “This can greatly improve the symptoms of celiac and heal the damage in the intestine in many patients,” says Dr. Murray. However, living gluten-free can be difficult. “Because of this, there are many researchers trying to develop new treatments,” he adds.
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