Gluten Free And Still Sick? You Could Have Refractory Sprue

Wheat Germ Flour

Wheat Germ FlourThere’s a term that comes up among the Celiac disease community called refractory sprue.   I think it’s a strange name until you break the term down.  Refractory means resistant to treatment in medical terms.  Sprue means a disease of unknown origin.

Refractory sprue is what people with celiac disease are said to have when the gluten free diet doesn’t work.   People with refractory sprue keep experiencing things like diarrhea, malabsorption, and flattened villi after they’ve been on a gluten free diet for at least 6 months.  One of the important points about this diagnosis is that the doctor has ruled out everything thing else known to cause these symptoms.

In other words, refractory sprue is an exclusionary diagnosis.  In lay person’s terms I think of it as a tag to put on a medical problem for which there is no clear understanding of what the heck is happening.  Actually there are three kinds of refractory sprue – some people never get better on a gluten free diet, some people get better for a while and then the symptoms return,  some but not all, symptoms disappear on a gluten free diet.  Sounds complicated, doesn’t it?

One common factor identified so far is that refractory sprue only occurs in adulthood with most people being over 30 years old.  So does age have something to do with it?  Doctors don’t know yet!  Is it possible refractory sprue isn’t even related to celiac disease?  Doctors don’t know yet!  It might be that refractory sprue is an entirely different disease with symptoms similar to celiac disease.

One of the big problems with refractory sprue is that people can get very, very sick.  Frequent diarrhea and long term malabsorption can cause severe weight loss, anemia and gut pain.  In the worst case scenario, the person can develop a malignancy or lymphoma.  Right now the treatment for refractory sprue is hospitalization.

It this sounds like all doom and gloom, there’s good news on the horizon.  Researchers are working furiously to find out what causes refractory sprue.  Some people have responded rapidly to drugs like cyclosporines.  As researchers study the problem longer, I’ve no doubt they’ll come up with an answer.  Since the symptoms are so much like those of celiac disease, they have a good starting point for studies.

If you have been on a gluten free diet for at least 6 months and your symptoms are not getting better, or are getting worse, then I suggest you talk to your doctor right away.  You want to prevent malabsorption and dehydration.  The sooner the doctor knows you need help, the sooner he or she can begin treating the symptoms.

 

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