To the celiac not doing better on gluten-free diet

"There are some people for whom a diagnosis of celiac disease is made, and they don't do well. So why is that? The usual reason is that they are not sticking to their diet.

The other possibility, for perhaps not doing well, is that they do not have celiac disease at all. And what do I mean by that? Well, there are lots of things that look like celiac disease but are not. So we as physicians have to be detectives. This is especially true in the pediatric group and less so in the adult group. The condition of tropical sprue is caused by bacteria that are damaging to the intestine. The small bowel biopsy looks similar to that of celiac disease and those patients have steatorrhea.

And there are certain immune deficiency diseases with malabsorption. In these patients, bacteria will create an intestinal lesion that looks quite similar. People who are starving get very short villi. Gastroenteritis which is another childhood disease, or cow's milk allergy or soy protein allergy and even giardia can cause blunting of the small intestinal mucosa. So if someone comes in with diarrhea, malabsorption and they get a biopsy and the diagnosis of celiac disease is made and they don't do well, these alternative diagnoses must be considered."

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We basically have proteins, carbohydrates and fats. In celiac disease, there is a malabsorption of all of these. This is because it is not like a patient with pancreatic disease when they have fat malabsorption primarily. The problem is that whatever you are ingesting cannot get into your body because the lining of the intestine is inadequate; you have malabsorption of everything. You have seen the pictures of babies in Africa with big bellies; that is protein malabsorption. From celiac disease you can get:

protein malabsorption
muscle weakness
edema
malabsorption of vitamin D which is a fat-soluble vitamin
hypocalcemia from which you will start to twitch and your bones will get thin
vitamin A malabsorption