Well today we went to see Barbie, RN at Idaho Pediatric
Gastroenterologists. It was for Kennedy's three month check-up. She has grown 3cm and gained 100 grams over the last 3 months! We are still concerned that she is not responding to the gluten free diet as well as she should. We are going to try and bulk up her diet with more fiber and
protein. This is hard to do when you are dealing with a 4 year old that does not understand why she is eating this "weird" food. If after 2 weeks of tyring this we do not notice a difference we will eliminate lactose (milk products) for 2 weeks. In 2 months if we have not seen a big change then we will have to consider going back for an additional surgery and do the biopsies of the colon and
esophagus to see if there are any changes. I guess that there is a chance that she could have refractory
celiac and that would require
immunosuppressive drugs for 3-6 months. I have attached some additional information below that explains refractory
celiac disease. We will work hard over the next two months and pray that Kennedy is able to get better without drugs.
What if patients fail to respond to gluten free diet?Failure to respond to a gluten free diet can be due to several reasons:
1) Patients are not following a strict gluten free diet and are still eating small amounts of gluten.
2) Patients are unknowingly ingesting unsuspected sources of gluten such as starch, binders and fillers in medications or vitamins.
3)Patients may have another co-existing condition such as irritable bowel syndrome, bacterial overgrowth of the small bowel, microscopic colitis, or pancreatic insufficiency that are causing the symptoms.
5)Patients may have refractory disease, or complications of
celiac disease.
What is refractory celiac disease?Refractory
celiac disease is a rare condition in which the symptoms of
celiac disease (and the loss of villi) do not improve despite many months of a strict gluten free diet. Before making a diagnosis of refractory
celiac disease it is important to exclude complications of
celiac disease and other co-existing conditions that can produce similar symptoms. It is believed by many knowledgeable physicians that refractory
celiac disease is a malignant condition, that is, it is a cancer.
What is the treatment for refractory celiac disease? The treatment of refractory
celiac disease is first to make sure that all gluten is eliminated from the diet. If there still is no improvement, medications are used. Corticosteroids such as
prednisone have been used successfully in treating some patients with refractory
celiac disease.
Immunosuppressive drugs (medications that suppress a person's immune system) such as
azathioprine and
cyclosporine also have been used. (These drugs also are used in treating some types of cancer.) Corticosteroids and
immunosuppressive drugs are potent medications with potentially serious side effects. Many patients with refractory
celiac disease are malnourished and have weakened immune systems, and corticosteroids and
immunosuppressive agents can further increase their risk of serious infections. Thus doctors experienced with treating
celiac disease should monitor treatment of refractory
celiac disease.