Facts about non-responsive celiac disease

For most patients with celiac disease, adhering to a gluten-free diet is effective in helping them manage their symptoms. But for a very small percentage, studies say between two percent and four percent, the symptoms of celiac disease persist despite remaining gluten free. For years, it was assumed that these patients either were not truly adhering to a strict gluten-free diet, they were experiencing cross contamination or that they had been misdiagnosed. And while it’s true that both misdiagnosis and hidden gluten can cause many people to continue to experience symptoms, even when they believe they’ve eliminated gluten from their diets, it’s also true that a very small percentage may have what’s known as non-responsive or refractory celiac disease, sometimes referred to as refractory sprue.

Non-responsive celiac disease is roughly defined as anyone who has not had their celiac symptoms resolved after following a gluten-free diet for a specific long-term period, typically 12 months. To date, the recommended diagnosis procedure for patients exhibiting signs of non-responsive celiac disease is a three-step approach:
• Consider alternative diagnoses to celiac disease such as lactose intolerance or inflammatory bowel disease
• Ensure a 100 percent gluten-free lifestyle is being achieved
• Consider additional diseases which may be present in addition to celiac disease and causing the symptoms to occur

Once these steps have been eliminated, the next step is to determine which type of non-responsive disease is present.

Scientists have identified two types of “true” non-responsive celiac disease: Type 1 which involves a faulty immune response, more severe than the one involved in “normal” celiac disease, and type 2, also referred to as clonal t-cell refractory sprue. Both types re characterized by severe intestinal disease and malabsorption in addition to being non-responsive to a gluten-free diet. Patients with type 1 typically show some positive response and good prognosis through aggressive nutritional support, including enteral liquids and micronutrients, coupled with medication which usually can be limited to steroids but may also involve the use of an immunosuppressive drug, at least initially.

But for type 2 patients, the outlook is not as good. Research has shown that these patients are more likely to develop severe medical complications, including enteropathy-associated T-cell lymphoma (EATL) or ulcerative jejunitis. The same type of support is offered, but more aggressively. In some cases, chemotherapy or surgery may be required. In both types, aggressive use of immunosuppressive drugs may actually increase the risk for EATL.

If you’ve been experiencing symptoms of celiac disease despite following a gluten-free diet, it’s important to talk to your doctor about screening for non-responsive celiac disease which, if left untreated, can cause severe damage and medical problems. And it’s also important to look for other possible sources of gluten in your diet and lifestyle. For instance, many makeup and body care products contain enough gluten to cause a response, especially in highly sensitive people. Some celiac patients may inadvertently be consuming gluten in their “gluten-free” dietary supplements which, ironically, they may be taking to replace nutrients often lost to malabsorption in celiac disease. That’s because processing equipment may be used for products containing gluten, and even cleaning the equipment may not be enough to remove all the traces before processing “gluten-free” products.

At Gluten Free Therapeutics, every CeliVites supplement is truly 100 percent gluten free and developed to be more absorbable than other types of supplements, so you can feel confident you’re getting great nutrition and no unexpected gluten. See out complete line of products by clicking here.

This information is provided by GFT to inform and educate. It is not to be used as a substitute for medical advice. We recommend that this and any other medical questions be discussed with a medical health professional.

This original article is made possible by Gluten Free Therapeutics. Our mission is to educate, inform, and provide the most effective nutritional products possible to allow those with celiac disease and serious gluten intolerances to heal their bodies. CeliVites complete line of superior gluten free supplements includes multivitamin/multimineral supplements, iron supplements, and calcium supplements for people living with celiac disease. All CeliVites products are designed to help you heal, restore and rebuild your body, because going gluten free isn’t enough! 

Comments ()

  1. Mary L Dutchover says:

    I realized that I have been gluten intolerant most of my life despite many tests that the doctor ordered. When I finally decided that must be what was wrong I was 65 and trying everything to go gluten free. I still have some symptoms, but not everyday. I securitize what I have been eating and cannot find causes. However, I have improved greatly, but not yet 100%.

  2. frances bruus says:

    My doctor has diagnosed me with Non-Responsive Celiac disease and everything i eat is Gluten Free My Shampoo My soap My makeup My Toothpaste is all Gluten Free its so frustrating and so painful

  3. dana s says:

    this is me! my doc has tried everything. finally said i must have bad irritable bowel. I cant eat most fruits, veggies, nuts, . its aweful. this makes sense. thanks for sharing. i will show my doc

  4. priscilla besemer says:


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