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new to the gluten free journey?
Celiac disease is an autoimmune condition that is triggered by the ingestion of gluten. When you have celiac disease, your body perceives gluten as an invader, which causes your body to launch an immune response. This causes inflammation in the intestinal tract and other parts of the body. Systemic inflammation then contributes to further autoimmunity and health concerns. Those who have celiac disease need to avoid gluten, a type of protein found in grains.
Typically, the avoidance of gluten is enough for a person to start feeling better and for their body to start healing. But in some cases, people do not respond to a gluten free diet and continue to have symptoms. This is a form of celiac disease called refractory celiac disease.
Refractory celiac disease is a form of celiac disease that does not respond to a gluten-free diet. Refractory celiac disease is much less common than celiac disease and presents as persistent or recurrent symptoms or signs of celiac disease.
Celiac disease can cause and coexist with several other conditions. Many of these other conditions can go unrecognized after a celiac disease diagnosis. Unfortunately, the celiac disease diagnosis can mask other issues. In addition, celiac disease can cause damage to the intestines and body that must heal, even after a gluten free diet is adopted.
For these reasons, many practitioners and researchers, including Gluten Free Society’s Dr. Peter Osborne believe that refractory disease is actually just a conglomeration of several issues. Some of these issues include the following:
Symptoms of refractory celiac disease generally align with the symptoms of celiac disease. In some cases, they are just more severe. Common symptoms include the following:
In addition, symptoms of complications from celiac disease may show up, including the following:
Causes of refractory celiac disease are not fully understood. We know that there is a genetic component to celiac disease, which may influence the development of refractory celiac disease.
There are also environmental factors that may contribute to the development of refractory celiac disease.
Many chemicals in our environment, known as persistent organic pollutants (POPs), are considered endocrine disruptors. Research has explored the effect that POPs may have on celiac disease, given the important interplay between the endocrine and immune systems. One study found that patients with higher serum dichlorodiphenyldichloroethylene (DDE) concentrations had a two-fold higher odds of celiac disease. DDE may be found in food, water, or elsewhere in the environment.
Studies have shown that some intestinal parasites can have an effect on the immune system of their infected hosts. In fact, in some cases, they are even able to modify and change the host’s immune responses, especially in autoimmune disorders like celiac disease.
Many medications may cause a reaction similar to the small intestinal mucosal inflammatory process of celiac disease. These include alcohol, antibiotics (eg., neomycin), non-steroidal anti-inflammatory drugs (eg., sulindac), stathmokinetic and chemotherapeutic agents (eg., colchicine, vincristine, methotrexate) and immunosuppressive medications (eg., azathioprine, mycophenolate mofetil). Several newer drugs have also recently been recognized to cause a sprue-like intestinal disease. These include pharmaceuticals, such as olmesartan, an angiotensin II receptor antagonist used in the treatment of hypertension, and biologicals, specifically ipilimumab, a humanized monoclonal antibody designed to overcome cytotoxic T-lymphocyte antigen-4, used in treatment of some advanced malignancies, including malignant melanoma.
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.
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.
including functional bowel disorders, microscopic colitis, pancreatic insufficiency, inflammatory bowel disease, lactose or fructose intolerance, and small intestinal bacterial overgrowth.
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.
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.
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.
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.
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.
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.
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.
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.
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*These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.
If you are pregnant, nursing, taking medication, or have a medical condition, consult your physician before using this product.
The entire contents of this website are based upon the opinions of Peter Osborne, unless otherwise noted. Individual articles are based upon the opinions of the respective author, who retains copyright as marked. The information on this website is not intended to replace a one-on-one relationship with a qualified health care professional and is not intended as medical advice. It is intended as a sharing of knowledge and information from the research and experience of Peter Osborne and his community. Peter Osborne encourages you to make your own health care decisions based upon your research and in partnership with a qualified health care professional.
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