Nonresponders are the 5% of Celiac patients who have either persistent symptoms and/or abnormally high Celiac antibodies after two years on the gluten free diet.
According the most recent medical review in the “Up to Date” database, there are 5 main categories of nonresponders to the gluten free diet:
- Patient is continuing to eat gluten. This is the most common cause of persistent symptoms. This can be on purpose (i.e. taking a little bite of a gluten containing food every once in a while) or accidental (i.e. not realizing that a child is nibbling her wheat containing Playdough at school).
- Patient doesn’t actually have Celiac Disease. For example, elevated serum antigliadin IgA antibodies may be a false positive. Small intestinal villous blunting may be caused by any of the following: hypogammaglobulinemia, acute infectious gastroenteritis, lymphoma, Crohn’s Disease, and/or a milk protein intolerance.
- There is a second disease present, in addition to Celiac, which is causing symptoms. Lactose intolerance, irritable bowel syndrome, small bowel bacterial overgrowth, pancreatic insufficiency, and microscopic colitis can all lead to digestive symptoms in patients with Celiac Disease. I recently wrote about having the dual diagnosis of Celiac Disease and Irritable Bowel Syndrome (see link).
- Refractory sprue is Celiac Disease which has never improved, or recurs after a period of “remission.” It usually needs to be treated with steroids or other drugs that suppress the immune system, as it can lead to #5.
- Ulcerative jejunitis and/or intestinal lymphoma. Patients with ulcerative jejunitis have symptoms of malabsorption, fatigue, loss of appetite, weight loss, abdominal pain, diarrhea, and fever despite being on a gluten-free diet. Small bowel obstructions may occur. Lymphomas have similar symptoms to ulcerative jejunitis, but may also be associated with fevers and abdominal masses.
The bottom line is that If you do not feel significantly better after two years on the gluten free diet, you need to work with your doctor to figure out the reason why. Untreated refractory sprue, ulcerative jejunitis, and lymphoma can lead to death. This is yet another reason to recommend screening to our family members…and if any of my 4 siblings are reading this, yes, you need to get tested or I will continue to badger you about this for this rest of your lives!
1. Cleveland Clinic Center for Continuing Education. “Celiac Disease and Malabsorptive Disorders.” By J. Wakim-Fleming.
2. “Management of Celiac Disease in Adults.” By Ciclitira, P.J. UpToDate, April 10, 2013. www.uptodate.com.