Lots of people with celiac disease still experience symptoms while on a gluten free diet. Of course they are eating a gluten free diet but they just aren’t getting better. They start to think that maybe its refractory celiac disease. A study in 2017 came out talking about exactly this and what could be done.
It seems we are not alone in the gluten free diet feeling woefully insufficient. I see lots and lots of people talking about how they still don’t feel better on a gluten free diet. Some continue to seek alternative medicine doctors, add supplements, or in general keep searching for a cure.
Sometimes people are diagnosed with refractory celiac (RCD) when they have ongoing symptoms and persistent damage to the small intestine. RCD has two types. RCD type 1 is typically managed with steroids and immunosuppresive drugs. RCD type 2 is much more devastating and exceptionally rare.
Sometimes people simply have non-responsive celiac disease, which is really an active celiac disease state due to inadvertent gluten exposure. Sometimes people are exposed to up to 2g of gluten even when on a gluten free diet. Two grams of gluten is approximately the same amount of gluten in a slice of bread. That is a lot of gluten when on a gluten free diet!
So, what to do – well this study suggests the Gluten Contamination Elimination Diet. This is an extremely restrictive diet that is done for 3-4 months under the supervision of a registered dietitian. They don’t recommend this diet to be done by anyone that has not been on a gluten free diet for less than 12 months.
The Gluten Contamination Elimination Diet eliminates all processed foods and dairy to eliminate the possibility of any contamination. No salad dressings, no seasonings other than fresh herbs, salt and pepper, all fresh veggies, fruits, and poultry, nothing frozen or canned, and only rice labelled gluten free. I gotta tell you – that is tough. Eventually, one can add foods back in as a test to see if the symptoms return. If symptoms return, the evaluation of non-responsive celiac is re-evaluated.
The most interesting thing I took out of this that even on a gluten free diet we can inadvertently be exposed to a lot of gluten. Eating fresh, whole foods and minimizing how much gluten free processed foods is what is most important. We should not automatically replace our favorite gluten filled foods with their gluten free replacements. Instead, we should just eliminate these foods from our diets and move on with our lives. It takes me the better part of 2 weeks to eat the 6 glutino english muffins I’m obsessed with right now. So, eat whole foods.