Refractory Celiac Disease
What You Need to Know if You’re Still Experiencing Symptoms of CD Refractory Celiac disease (CD) is CD that does not respond to a strict gluten-free diet. While this only occurs in about 1.5% of individuals diagnosed with CD, it does occur and is worth noting if you continue to have negative symptoms of CD even after adhering to a gluten-free diet. There are two types of Refractory CD – Type I and Type II. The type an individual has depends on the state of the small intestine.
In Type I Refractory CD, the lining of the small intestine appears normal. This is the type most individuals diagnosed with Refractory CD have. In Type II Refractory CD the small intestine does not heal, even with a gluten-free diet. This type of Refractory CD is not only rarer than Type I, it is also much more serious, as it tends to be resistant to treatment and can lead to a form of lymphoma.I Still Have Symptoms Even After Going Gluten-Free. Could I have Refractory CD? Probably not. While individuals diagnosed with Refractory CD do experience recurrent negative symptoms, even after adhering to a strict gluten-free diet, it is a rare condition. Remember, not quite 2% of individuals with CD have Refractory CD. There are some commonalities shared by those who do have Refractory CD. Commonalities & Symptoms Shared by Individuals with Refractory CD
· They have a formal CD diagnosis based on small intestine biopsy (the only definitive diagnosis that currently exists.)
· They are nearly always “middle-aged” adults. (Rarely if ever seen in children.)
· They suffer from diarrhea. (Four out of five report this symptom!)
· They experience dramatic unexplained weight loss. (Due to the previous symptom.) However, the majority of individuals with negative symptoms of CD, even after going gluten-free, do not have Refractory CD, but instead are consuming gluten and do not realize it.
Gluten is a sneaky protein and can get into our bodies by:
· Being in a food we believe is gluten-free. For example, soy sauce, canned soups and even spice packets can contain gluten
· Being in a skin, hair or dental care product that gets into our mouth. For example, in moisturizer, makeup, shampoo or even mouthwash! I’ve written about this in detail in my monthly gluten-free living magazine, “Food Solutions”. It actually helped one of my subscribers figure out her mouthwash was making her sick!
· Cross-contamination at home. For example, from crumbs in a shared toaster, a counter top with crumbs or from wooden utensils used for gluten containing and gluten-free cooking. You can learn more about keeping safe in a shared kitchen in my article, “4 Winning Strategies for Staying Safe in a Shared Kitchen”.
· Cross-contamination in foods we believe to be gluten-free. For example, pre-packaged dried fruit dusted with wheat to prevent sticking or bulk bin products like dry beans or nuts.
· Cross-contamination at a restaurant. For example, from the ketchup bottle! Ketchup is typically gluten-free, but read this Gluten Alert! to learn how I saw someone contaminate the entire ketchup bottle on the table at a family restaurant. Of course, although Refractory CD is rare, if you are experiencing the symptoms of CD, even after adhering to a strict gluten-free diet and are sure you are not ingesting hidden gluten or being cross-contaminated, it’s time to speak to your doctor to determine what is going on with your health.