Yes, unfortunately, statistics once again affects the normal bell curve distribution. In this case, there is a subgroup of individuals with celiac (1%) that don’t respond to a gluten free diet. This is called refractory celiac disease. If a person has been following a gluten free for six months without improvement in their blood levels of serum transglutaminase or in their intestinal villi, this is called primary refractory celiac disease, and if they do well on the gluten free diet initially but then relapse, this is called secondary refractory celiac disease.
Why does this happen? First we have to rule out whether the diet is indeed completely free of gluten, and if so, ask whether or not the patient really has celiac disease in the first place. Over a third of time, diets in these folks have actually been found to contain gluten. But other possibilities for persistent symptoms include: food allergy, small intestinal bacterial overgrowth (SIBO), a deficiency of disaccharides, colitis or Crohn’s disease, eosinophilic enteritis, and adenocarcinoma.
Those with true refractory celiac disease should be tested further for aberrant or abnormal intraepithelial lymphocytes, which can progress to ulcerative jejunitis and/or (EATL) enterophathy associated T-cell Lymphoma.