What is Nonresponsive Celiac Disease? Three Things to Know

It is a common misconception that those with celiac disease get completely well after starting a gluten-free diet. While many people do feel much better, others continue to deal with pain and discomfort, experiencing something known as nonresponsive celiac disease. 

A 2003 study found that celiac patients on a gluten-free diet have twice as many gastrointestinal symptoms as the general population. So what can be done to combat this? What are some steps to take for those who still don't feel better even after eliminating gluten? Here are three important steps that will help you navigate through this frustrating time. 

1. Combat Accidental Gluten Exposure 

Research shows that an overwhelming amount of us (as much as 70%!) continue to be exposed to gluten even though we are trying our hardest to avoid it. Experts estimate that as much as 50% of unresponsive celiac disease cases can be attributed to accidental gluten exposure. Even with the grocery shelves stocked with gluten-free products and our favorite restaurants offering gluten-free menus, gluten is still managing to find its way into our systems.

It is as important as ever to be diligent, as the crumbs of cross-contamination can have large effects. I am incredibly careful myself, but still managed to have a very bad experience a couple of weeks ago, due to my grocery delivery shopper accidentally buying regular Tate's chocolate chip cookies instead of gluten-free. The packaging is practically identical, and I didn't even notice. It just goes to show, the minute we let our guards down, something bad can happen. Triple check when ordering at restaurants, don't stop reading labels, and make sure friends and family who have you over for dinner know where gluten can be lurking. 

Besides food, other potential sources of gluten include medications, makeup and beauty products. Even tiny amounts of gluten can cause your body to continue to react and for symptoms of celiac to persist, so this first step is above all the biggest and most important!

2. Get Evaluated For Other Conditions

What a lot of people still experiencing symptoms of celiac aren't aware of are the higher rates of other intolerances and health conditions that go hand in hand with celiac. What that means is that while you may be successfully treating celiac by avoiding gluten, your symptoms may persist because you have another condition. Irritable Bowel Syndrome, lactose intolerance, fructose malabsorption, colitis, and small intestinal bacterial overgrowth are just some of the common secondary conditions that can occur in those who have celiac disease and lead to ongoing digestive symptoms. Less common secondary conditions include Crohn's disease, GI motility disturbances and various other food allergies and intolerances. 

3. Make Sure Your Celiac Diagnosis is Accurate 

A 2012 study found that as many as 10% of those with nonresponsive celiac disease had actually been misdiagnosed. The patients in the study had no improvement on a gluten-free diet, and doctors were able to find alternative explanations for their digestive symptoms, which included irritable bowel syndrome and wheat allergies. 

Red flags for an initial celiac disease misdiagnosis include negative celiac antibody tests or a normal small intestinal biopsy before going on a gluten-free diet. In some cases of celiac disease misdiagnosis, patients have had negative antibody tests but biopsies that show flattening of the intestinal villi, which is a hallmark indication of celiac disease. This villi flattening, however, is sometimes seen in non-celiac conditions such as Crohn's disease and milk or soy intolerances. Both the antibody blood test and the intestinal biopsy are vital components of the celiac diagnostic process, so if only one pointed to celiac and you still experience symptoms, a misdiagnosis could be the culprit. 

Lastly, Educate Yourself

Knowledge is power. And when it comes to your well-being, gathering information is the first step in taking control of your health. We recommend the book, Celiac Disease: A Hidden Epidemic. It's a must-read for Celiacs and contains very up-to-date information on celiac disease, gluten intolerance, and gluten sensitivity.