Understanding Refractory Celiac Disease
By Lana Bandoim
Celiac disease is an autoimmune condition because the body reacts to gluten with an immune response. Gluten is a common protein in grains such as rye, wheat and barley. Some people who have celiac disease are eventually diagnosed with refractory celiac disease. This is a complicated condition that can develop over time.
What Is Refractory Celiac Disease?
Refractory celiac disease is usually discussed after the initial celiac disease diagnosis. If you have been following a strict diet of gluten-free food for 12 months and still have symptoms, then it may be refractory celiac disease. This means that the small intestines are not healing properly despite the elimination of gluten.
Some people have more severe symptoms with refractory celiac disease. However, many patients have symptoms that are almost identical to the ones they had before being diagnosed with general celiac disease. They often experience gastrointestinal problems, bloating, pain, anemia, weight loss and other issues.
What Causes Refractory Celiac Disease?
The exact cause of refractory celiac disease is unknown. However, researchers have speculated that it may be linked to a severe or malfunctioning immune response. Some have suggested that the intestinal T cells, which are activated by the presence of gluten in people who have celiac disease, remain activated despite the gluten-free diet. It is possible that the immune system does not want to or cannot shut off and continues to react.
How Is Refractory Celiac Disease Diagnosed?
Your doctor may recommend an endoscopy and biopsy to examine the small intestines. This will allow specialists to determine if there is ongoing damage. A doctor may also order other tests such as colonoscopies, CT scans, MRIs and other imaging exams to rule out the possibility of other diseases creating the same symptoms.
How Is Refractory Celiac Disease Treated?
There is no official cure or one specific treatment for refractory celiac disease. However, doctors may recommend diet changes and supplements to help with malnutrition. Some people may benefit from steroids or other immunosuppressive drugs. Experimental treatments have also been tried with some success. These treatments do not work for everyone, so it is important to discuss all of the options with a specialist who understands refractory celiac disease.
If you are concerned about refractory celiac disease, then talk to your doctor or see a specialist. It is important to get the right diagnosis and pursue potential treatments that may help you manage celiac disease.
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