This little-known disease affects about 3 million Americans

Celiac Disease affects about 3 million Americans. Here's why our doctors believe it is important to screen for this genetic autoimmune disorder.

It was May 2020, and we were right in the thick of the pandemic. Dr. DeMarco, nurse Carla and myself were usually the only people that physically came in to the office. Most of the lights outside of the medical suite were turned off for months.

Needless to say, we didn’t have many in-person patient visits. My daughter, Ellie, was in 9th grade and my son, Andrew, was in 10th and they both were completely online.

I wanted my kids to come to Connected Health and have their first ‘adult’ physicals. Now we had the time to make it happen. As part of our first physicals with our patients, we draw and run a very comprehensive panel of bloodwork. A few years into our practice, Dr. DeMarco had discovered that a young male had celiac and didn’t know it. It is common for young adults not to find out they have celiac until they go off to college. Maybe it’s the large amount of beer they drink that sets off a barrage of symptoms (LOL). If you have kids that went to college, you know how it goes. Your kid calls home not feeling well and they are miles away. A tummy ache is a tough one for mom or dad to fix remotely. And it can be a while before they come home and fit in a doctor’s appointment. Dr. DeMarco decided to add a test for celiac to our normal panel of initial labs.

Ellie never had stomach issues. In fact, she was the only one in our house that could eat anything she wanted and didn’t suffer! So, when the celiac test came back crazy high, we immediately thought it was a lab error. A week or so later, we ran the test again and the number had climbed. That ruled out the lab error and now we had to decide what to do if anything. She had no symptoms. Dr. DeMarco advised me to take her to a pediatric gastroenterologist, so we made an appointment.

As we normally do, Dr. Demarco wrote a note to the gastro explaining why he recommended this consult. A 15yr old female with 2 blood tests showing very high numbers suggesting celiac. Arriving for her appointment, we had no idea how it would go. The physician seemed very nice and had clearly read that letter. After exchanging pleasantries, he began asking questions. One of his first questions was asking Ellie when she started experiencing symptoms and what they were. She responded, telling him that she had no symptoms.

Maybe I always have my guard up because I don’t often go to ‘regular’ doctors. Thankfully, we typically don’t need appointments outside of our concierge medical practice. We are spoiled. But I swear I could read what he was thinking. What kind of doc ordered celiac bloodwork on someone with no symptoms?? His follow up question came out much nicer than what seemed to be in his head, but he asked why her physician ran the test?

The question bothered me. I felt like I needed to defend our practice and explain that we try to take a preventative and proactive approach to our patients’ healthcare. I understood where he was coming from. A celiac test is not ‘standard of care’ to run onall patients. Sadly, it is not common for a primary care practice to have the time to stay ahead of issues before they become problems.

An endoscopy revealed that Ellie had all the physical signs of celiac on the inside. He said she probably would have had symptoms eventually but 40% of people with celiac are asymptomatic.

To me, the parent, I was so glad we had discovered this before Ellie started to experience discomfort. I could hear that phone call in my head of her calling me and telling me her stomach hurt.

It’s a simple blood test. Why wouldn’t we order the test on everyone? Why does our approach to healthcare have to be reactive? Why do we wait until someone is sick before we act? It makes no sense to wait when there are possible ways to find out earlier.

For Ellie, finding out at 15 allowed her to make necessary changes to her diet early and adjust to a gluten free life. Now 3 years later, it is her normal.

Identifying a medical issue early can never be a bad thing. We, as patients, should be empowered to participate in our own healthcare journey. Waiting around until something goes wrong should not be the standard of care. We should demand better.