Actual Cause of Non-Responsive Celiac Disease

By Dr. Vikki Petersen

It’s bad enough to receive a diagnosis of celiac disease or gluten sensitivity, but you really don’t want to fall into the category of non-responsive celiac, a condition where symptoms continue despite a gluten-free diet.

While that is the definition of ‘non-responsive celiac disease’, personally I haven’t run across it with my patients. What I have seen are patients with celiac disease who:

1. Cheat on their diet knowingly. They have ‘bites’ of things containing gluten now and again.
2. Cheat on their diet lazily. They ‘try’ but when they go out to eat or to a party they don’t ensure that something is gluten-free before eating it.
3. Cheat on their diet unknowingly. Due to poor education or confusion about where gluten can ‘hide’, they eat, drink or consume a medication that has gluten on a somewhat regular basis.
4. Do not receive assistance from their doctor to handle the secondary effects of gluten. These include things such as:
   1. Having cross-reactive food reactions
   2. Having intestinal infections
   3. Having a poor balance of good bacteria in the gut
   4. Having a nutrient deficiency
   5. Having a toxicity problem
   6. Having a hormonal imbalance

Most of the above require a laboratory test to determine. These are all tests that we utilize here at the clinic, so feel free to contact me for more information.

Due to the frequency of patients we see who are gluten intolerant, I’ve always wondered if my theory of cheating would be born out in a research study.

Alas, someone finally did just that and here are the results. The study was published in the World Journal of Gastroenterology this past March 2012 and the team of researchers who hailed from a Gastroenterology Center in London, set out to discover the most likely reasons underlying persistent symptoms of celiac disease, despite a gluten-free diet.

The findings of 112 patients with non-responsive celiac were quite interesting. Ten percent were found not to have celiac disease. No wonder a gluten-free diet wasn’t working to relieve their symptoms! Of the remaining group of 100, nearly half were not following a strict gluten-free diet, as I suspected. Of that group, half were consuming gluten due to ignorance, while the remaining half was knowingly cheating. The rest of the group was made up of patients who predominantly fell within what I described above as the secondary effects of gluten. They had colitis (inflammation of the colon) or bacterial overgrowth of their small intestine. Both these conditions are typically handled by addressing one or more of the factors I mentioned above in #4.

Of the total group properly diagnosed with celiac disease, only 9% were found to have refractory celiac disease and 3 of these patients were later diagnosed with cancer, intestinal lymphoma to be precise. Refractory celiac disease is a term that means a patient continues to have the symptoms of celiac disease despite having ruled out any other possible causes.

The take-away from this study was that in over 90% of the patients given the label of non-responsive celiac disease, a true cause WAS found for their symptoms. Only 9% truly had refractory or non-responsive celiac, and over half of them had cancer at the time the study was performed.

My conclusion is that if you have been diagnosed with celiac disease, or gluten sensitivity, and you continue to have symptoms, know that there is a very strong likelihood that a cause can be found and you don’t have to continue to suffer. It turns out that only a rare few actually have a condition that warrants being called non-responsive or refractory.

Do you know of anyone with this diagnosis? Please share this post with them and know that I’m here to answer any questions. I’m happy to offer a free health analysis to you, your friends and family. Call 408-733-0400. We are here to help!

To your good health,

Dr Vikki Petersen, DC, CCN

Founder of HealthNOW Medical Center

Co-author of “The Gluten Effect”

Author of the e-Book: “Gluten Intolerance – What you don’t know may be killing you!”

Reference: World Journal of Gastroenterology 2012 Mar 28;18(12):1348-56.