Refractory Celiac Disease

How is Refractory Celiac Disease Diagnosed?

Refractory celiac disease is defined as persistent symptoms, signs, laboratory abnormalities, or histological changes typical of celiac disease, despite at least 6 to 12 months of presumed adherence to a gluten free diet. The following steps can help to confirm a proper diagnosis.

1. Confirm the initial diagnosis of celiac disease: This can involve a review of prior diagnostic testing, including serologies, endoscopies, and histologic findings.
2. Confirm that accidental or occasional gluten ingestion is not a cause of continuing symptoms: This can be done through serologic testing, dietitian review, and detection of immunogenic peptides in stool or urine. A study by the gastroenterology department at Beth Israel Deaconess Medical Center found that 36 percent of patients with non-responsive celiac disease were inadvertently consuming gluten. See the notes in the following section that distinguish a true gluten free diet from a traditional gluten free diet.
3. Look for villous atrophy: Esophagogastroduodenoscopy with small bowel biopsies should be performed. If villous atrophy persists or the initial diagnosis of celiac disease was not confirmed, consider other causes of villous atrophy, including common variable immunodeficiency, autoimmune enteropathy, tropical sprue, and medication-induced enteropathy.

How to Treat Refractory Celiac Disease

Adopt a true gluten free diet

The key change to make to manage celiac disease or gluten sensitivity is to eliminate gluten-containing foods from the diet. While this might seem straightforward, the unfortunate reality is that many products are marketed as gluten free when they actually contain hidden sources of gluten. Therefore it is critical to understand how to read labels and what to look for so that you can properly avoid gluten in your diet. The traditional gluten free diet restricts wheat, barley, and rye as sources of gluten from the diet. Those following the traditional gluten free diet often find themselves consuming lots of processed gluten free foods made with alternative refined grains, inflammatory gums and stabilizers, sugars or sweeteners, and other artificial colors or flavors. These foods are largely comprised of corn, rice, and/or oats. They are highly processed, and contain large amounts of carbohydrate calories, but very low quantities of vitamins and minerals. However, since gluten is a mixture of proteins found in ALL grains, a true gluten free diet excludes ALL grains. This might seem contrary to mainstream advice, but the reality is, only a few types of gluten proteins ( alpha gliadin, found in wheat, secalin found in rye, and hordein found in barley) have been studied extensively. The labeling laws around gluten are based on these forms of gluten protein, but fail to recognize all other forms of gluten. There are additional types of gluten proteins found in other grains. There is a growing body of research that shows that grains like oats, corn, and rice do actually cause inflammatory damage to those with celiac and gluten sensitivity.

Perform a systematic evaluation for other potential causes of symptoms

including functional bowel disorders, microscopic colitis, pancreatic insufficiency, inflammatory bowel disease, lactose or fructose intolerance, and small intestinal bacterial overgrowth.

Perform food sensitivity testing

Sometimes, symptoms are related to other food sensitivities. These sensitivities can arise as a result of intestinal permeability or leaky gut due to gluten-induced intestinal damage. Common sensitivities include dairy, eggs, and soy. However, other sensitivities may include less common foods like fruits and vegetables, nuts and seeds, or legumes. Food sensitivity testing can help to identify these other food reactions.

Evaluate the diet

Even after eliminating gluten from your diet, there is healing that must occur in the intestines and the body. This healing will address the intestinal damage from gluten consumption, plus the downstream effects of intestinal damage, like compromised skin health and nutrient deficiencies.  Incorporating nutrient-rich and gut-healing foods in the diet like bone broth can help to heal and repair the gut lining. Avoiding highly processed foods and focusing on healthy whole foods like grass fed and pasture raised meat and eggs, fruits and vegetables, and nuts and seeds helps to support the health of the gut microbiome.

Test for nutritional deficiencies

Nutritional deficiencies can contribute to both gastrointestinal inflammation and failure to heal. Consider getting tested for nutritional deficiencies, as accurate test results can help guide your decisions around food choice and supplementation.

Review medications and supplements

As discussed above, several medications contain gluten. Gluten content may not be abundantly clear, so doing your research, talking to your healthcare practitioner, and contacting the medication manufacturer may be necessary in order to rule out potential gluten in your medications. Some supplements may also contain gluten. Gluten can be introduced in the manufacturing process, it can also be naturally present in certain ingredients like herbs and botanicals. Make sure your supplements are tested to be gluten free.

Explore treatments

Certain treatments exist for cases of refractory celiac disease that require more support. These include things like steroids and immunosuppressants. Some research suggests that corticosteroids, most commonly open-capsule budesonide or prednisone, are the medication of choice for cases of refractory celiac disease.

Explore natural remedies

Natural remedies can help to reduce inflammation and support healing. Certain foods and supplements like turmeric, ginger, and omega-3 fatty acids can help to support a healthy inflammatory response as the body heals.  You can read our Ultimate Guide To Supplements here.

How to Live with Refractory Celiac Disease

It can feel frustrating to live with refractory celiac disease. Many patients find themselves feeling confused, overwhelmed, or hopeless at times. It is important to find a support team to help you manage and process your emotions and treatments. This may include healthcare practitioners who are experienced in working with refractory celiac disease cases, close friends or a partner, online resources and support groups, Also, some aspects of refractory celiac disease might feel outside of your control. But remember that there are certain diet and lifestyle adjustments discussed above that you can make to help manage symptoms.

Conclusion

Refractory celiac disease is a serious condition that can require significant care and exploration to diagnose and treat. If your symptoms aren’t improving on a gluten free diet, be sure to explore hidden sources of gluten in your life, and reach out to a trusted healthcare provider who is well versed in working with refractory celiac disease patients. Not sure if you’re sensitive? Take the Gluten Sensitivity Quiz.