Medically reviewed on Sept 20, 2023 by Jordan Stachel, M.S., RDN, CPT. To give you technically accurate, evidence-based information, content published on the Everlywell blog is reviewed by credentialed professionals with expertise in medical and bioscience fields.
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Celiac disease is a lifelong, autoimmune disorder that diminishes a person’s ability to eat gluten safely. Healthcare providers will typically prescribe gluten-free celiac diet plans to people with celiac disease, but for a small group of people, limiting or eliminating gluten ingestion does not help their digestive system recover. [1] This may point to a rare type of celiac disease called refractory celiac disease (RCD). [2]
Cases of RCD are extremely scarce: only 1.5% of people diagnosed with celiac disease have it. [3] However, if refractory celiac disease develops, it can be hard to live with and treat. Educating yourself about the risks and types of celiac disease can be a life-saving part of your treatment plan if you’re diagnosed.
All types of celiac disease have the potential to damage the small intestine.4 When people with celiac disease ingest gluten, their immune systems respond by trying to dispel gluten from the small intestine. In the long term, this can result in villous atrophy, which occurs when the villi of the intestines (small, finger-like structures) degrade. [3]
People with refractory celiac disease have sustained significant villous atrophy, making it difficult to absorb nutrients and essential fluids through food. [1] But, because cases of RCD are so scarce, the factors and causes responsible can be unique to each person. [1]
Refractory celiac disease may develop due to:
Alternatively, some people don’t follow a strict gluten-free diet even if they have been diagnosed. Even then, RCD can take decades to develop. [6]
All forms of celiac disease are considered severe, chronic autoimmune conditions, but RCD can have especially serious health consequences. If managed improperly, refractory celiac disease may result in [2]:
Refractory celiac disease primarily affects older adults. If you’re diagnosed with RCD, your healthcare provider will categorize your condition into one of two types [6]:
Type II refractory celiac disease is more severe, as patients have a greater than 50% likelihood of developing enteropathy-associated T-cell lymphoma [6]
Because refractory celiac disease is rare and difficult to treat, healthcare providers only issue a diagnosis after ruling out other possible causes. Persistent symptoms associated with refractory celiac disease may also be caused by [3]:
Moreover, individuals are only evaluated for RCD if they have not begun to heal after 1 year of adhering to the diet prescribed by a healthcare provider. [3] So, if you’ve been on a gluten-free diet for several months and are still experiencing ongoing symptoms, your small intestine may just need some time to recover.
So, can celiac disease go away over time? Refractory celiac disease requires special treatment by a celiac specialist. [1] Some people who have it may need to meet their nutritional needs intravenously.
In other cases, you can manage refractory celiac disease with [10]:
Whatever treatment protocol you undergo, managing refractory celiac disease requires regular check-ins with healthcare providers. Taking control of your well-being, no matter your diagnosis, is critical to ensuring you get the highest quality of life possible.
Taking a proactive stance on your well-being starts with knowing your body’s needs—and its limits. With Everlywell, you can test for celiac disease affordably, conveniently, and confidently in the comfort of your own home.
All Everlywell tests are privacy-protected and reviewed by CLIA-certified labs to get results you can rely on. If your results indicate a need for further treatment, Everlywell will even loop you into a vetted provider network that is able to counsel you on next steps that best suit your needs.
Find out your celiac disease status and take charge of your well-being by visiting Everlywell today.
Celiac Diet Plan: Benefits and How To Create One
Hidden Symptoms of Celiac Disease
Silent Celiac Disease: Symptoms & Causes
Wheat Allergy vs. Celiac Disease: How Are They Different?
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