You’ll often hear me say that those of us diagnosed with celiac disease should be grateful for a couple of reasons. First of all, of the estimated 3 million Americans with the disease, only 3% of them have been lucky be correctly diagnosed. Secondly, once diagnosis has been made, treatment is simple and non-medicative—the gluten-free diet. On the other hand, as effective as the treatment is supposed to be, celiac patients don’t always see all their symptoms resolved after adopting the diet. This condition is known as nonresponsive celiac disease (NRCD). There could be many explanations for a failure to respond favorably to the gluten-free diet, and according to Shailaja Jamma, MD, and Daniel Leffler, MD, MS, in Real Life with Celiac Disease, an actual inability to respond to the diet due to irrevocable damage to the small intestine, known as refractory celiac disease, is actually rare.
Nonresponsive celiac disease is a general term and not a diagnosis for celiac patients who don’t seem to recover fully after going gluten-free. According to Drs. Jamma and Leffler, “you would need to be on a GFD for at least 6 months without significant improvement before we would decide that you were not responding and look for other reasons.” This is because recovery times vary from person to person, and as long as patient seems to be improving continually over time, no matter the speed, nonresponsive celiac disease is usually an unnecessary label.
In their chapter on NRCD in Real Life with Celiac Disease, Jamma and Leffler provide a helpful chart breaking down the major causes behind NRCD and describing how common they are. According to the chart, the most common causes—designated “very common’—are gluten exposure and Irritable Bowel Syndrome (IBS).
The next most common causes of NRCD, labeled as “somewhat common,” are lactose intolerance or fructose malabsorption, microscopic colitis, and small intestinal bacterial overgrowth. Finally, the bracket of “rare” causes encompasses actual refractory celiac disease, which can be confirmed with a biopsy of the small intestine, an eating disorder, inflammatory bowel disease, which can also be confirmed with a biopsy as well as imaging studies of the small or large intestine, pancreatic exocrine insufficiency, and motility disturbances (when food moves either too fast or too slow through the intestine). Finally, a food allergy and cancer are “very rare” causes of NCRD.
According to the Mayo Clinic, as reported by Celiac.com, “gluten contamination is the leading reason for non-responsive celiac disease,’ and that “of non-responsive celiac disease cases, 18% are due to refractory Sprue.’ The Mayo Clinic researchers recommend that before making a refractory celiac disease diagnosis, additional diseases as well as gluten contamination should be eliminated as causes.
So what is actual refractory celiac disease or refractory Sprue? The Mayo Clinic researchers define it as a “failure of a strict gluten-free diet to restore normal intestinal architecture and function in patients who have celiac-like enteropathy.” It’s reassuring to know that this cause of NRCD is actually rare and one of the last conditions to test an NRCD patient with. According to About.com, “Even on a gluten-free diet, these patients will not be able to absorb enough nutrients just by eating, and they may require intravenous nutrition and immunosuppressive medications.”
Interestingly, according to Jamma and Leffler, “The first step is often to get confirmation that you do indeed have celiac disease.” It is commonly known that people can be incorrectly diagnosed with other diseases when they in fact have celiac disease, but Jamma and Leffler tell us that “the reverse often occurs as well, that is, celiac disease can be mistakenly diagnosed when the true problem is something else.”
In the end, if you have some concerns regarding lack of relief from your celiac disease symptoms and you’ve been on the gluten-free diet for a while, it’s recommended that you talk to your doctor about a non-responsive celiac disease evaluation. An evaluation made by a nutritionist may very well confirm that you are still ingesting gluten, in which case your diet can be adjusted. If not, there are nearly a dozen other causes that can explain your inadequate recovery, even the conclusion that you may not in fact have celiac disease.
Jamma, Shailaja, MD, and Leffler, Daniel A, MD. “Nonresponsive Celiac Disease.” Real Life with Celiac Disease: AGA Press, 2010. http://www.reallifewithceliacdisease.com
Celiac.com: Causes of Non-responsive Celiac Disease – More than 50% Continue to Ingest Gluten Unknowingly http://www.celiac.com/articles/741/1/Causes-of-Non-responsive-Celiac-Disease—More-than-50-Continue-to-Ingest-Gluten-Unknowingly/Page1.html
About.com: Refractory (Unresponsive) Celiac Disease http://celiacdisease.about.com/od/symptomsofceliacdisease/a/refractorysprue.htm
From our home to yours, Tina Turbin.