Celiac disease is an autoimmune disease that normally responds well to treatment, for most a gluten free diet will heal their small intestines and reverse much of the damage that celiac disease created. In rare cases a gluten free diet does not heal the damage and despite strict adherence to the guidelines patients will still experience all the damage, symptoms and complications of celiac disease, when this occurs it is called refractory celiac disease. Before being diagnosed with this type of celiac disease it is important to rule out any other potential causes for the continuation of their symptoms.

The first consideration is to be sure the patient is in total compliance with dietary restrictions, including small, minute amounts of gluten they may not have previously considered, and have they been completely gluten free long enough to heal all the damage to the small intestine. Things that need to be considered are if a patient eats out a lot or what sort of medications they take, these can all be sources of hidden gluten or cross contamination that the patient is either not aware of or has no control over.

There are also certain rare conditions that can mimic or coexist with celiac disease so the second step in a refractory celiac diagnosis is to rule these conditions out. Blood tests will often be taken and biopsies done to confirm that the disease is still not controlled and the damage is still occurring.

At this point a diagnosis of refractory celiac disease is made, and treatment will begin. Often the root cause is complications, so checking for these is the next important step. Things such as lymphoma, colitis, and pancreatic insufficiency should be checked and treated.

If patients do not respond to treatment or none of these complications exist, then doctors will consider suppressing the immune system to relieve symptoms, usually this is done with steroids. While the need to treat refractory celiac disease with steroids is very rare; it can be very effective for these cases.

Thankfully refractory celiac disease is rare, and in most cases the ongoing symptoms can be resolved in other ways, since steroid treatment can cause troubles of its own and should be avoided except as a last resort.