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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.


Learn more about supplements for people with Celiac and gluten-sensitivity.



I was also diagnosed with Lymphocytic Colitis which occurs with gluten exposure. It is one form of Microscopic Colitis. The symptoms are very similar and ingestion of gluten can set off reaction lasting weeks or Months of a flare. Many have never heard of this. I’m in an on-line support gkroup which is composed of patients from all over the world and have learned so much from the members of the group.
If people don’t seem to respond to just taking gluten out of their diet, this diagnosis may be helpful to research.

Nov 16, 2016

Allana :

I have Celiac and suffered for many years despite a strict gluten free diet. When I get even a crumb of gluten, I have an immediate and severe reaction so I know I am not getting contaminations. Through my Functional Nutrition training, I found I had parasites, SIBO (small intestine bacterial overgrowth), Candida, leaky gut and limited detoxification capacity. I also am sensitive to gluten- cross reactive foods. I find there is so much more to healing Celiac than just eating gluten free. It’s a shame doctors don’t know this and often shame their patients thinking they are eating gluten instead of looking for the underlying cause of their suffering. If you are suffering with Celiac, find a Functional Medicine practitioner who can run the proper tests and help you get well.

Nov 15, 2016


Interesting… my husband will insist that my not infrequent bad experiences are due to me doing too much, spending too much time on the computer (?), being overtired etc. etc… now I have an answer.

Nov 15, 2016

sandie frantz:

I, too, was very careful with gluten and knew I was doing all that right. Nonetheless, I had horrible symptoms and after several years of struggle I went back to my GI doctor. He ran labs which showed all the Celiac #’s were perfect indicating I was not ingesting gluten. However, my symptoms were horrible. He did a colonoscopy and determined I had lymphocytic colitis. He explained it is common in Celiac patients. It required a biopsy as it is not seen by the naked eye. He prescribed a medication with seriously, within one day, all the horrible symptoms are gone. I have my life back. I strongly suggest you see a GI and ask to be tested for this. It changed my life.

Nov 15, 2016

siddhartha singh rajput :

i am patient of celiac disease but still suffering from irritative bowels and also from deficiency of vitamin D. I am on gluten free diet from 5 years. i am going on right track of avoiding gluten or not

Jul 28, 2016

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