Researchers finally are waking up to what some of us in the gluten-free community have been saying all along: gluten cross-contamination in trace amounts -- well below the 20 parts per million threshold thought to be safe -- is responsible for continuing symptoms in plenty of people with celiac disease.
In a study published online last week in the journal BMC Gastroenterology, researchers from the Center for Celiac Research (formerly part of the University of Maryland, now part of Massachusetts General Hospital) described using a diet comprised of whole foods and practically no grains to help people who didn't improve on a "standard" gluten-free diet (i.e., one containing processed "gluten-free" foods and a hearty sampling of baked goods made with gluten-free grains).
The researchers included 17 diagnosed celiacs who had failed to control their symptoms or heal, even though they followed the gluten-free diet religiously (as verified through an interview with a dietitian). Half continued to experience diarrhea, and about one-third complained of fatigue and/or abdominal pain.
About half had high-positive celiac blood tests, three had weak positive test results, and four had negative test results (although three of those with negative blood tests showed continuing villous atrophy upon endoscopy).
Six of the people included (including the three with negative blood tests but ongoing intestinal damage) met the criteria for refractory celiac disease at the start of the study. Nonetheless, the researchers hypothesized that they didn't have refractory celiac disease at all; instead, the trace gluten commonly found in processed foods (especially grain-based products) was preventing them from healing and feeling better.
For three to six months, the study subjects ate only fresh fruits and vegetables, fresh meats, poultry and fish, eggs, unflavored dairy products and rice. They were allowed to have oil, vinegar, honey and salt, and could drink 100% fruit and/or vegetable juice, Gatorade, milk or water.
At the end of the study, 14 out of the 17 had responded to this diet, which the researchers dubbed the "Gluten Contamination Elimination Diet," and five of the six who had met the criteria for refractory celiac no longer did.
Of particular interest (and the only part of this study that didn't ring completely true to me): 11 of the 14 people whose symptoms and test results improved on this elimination diet were able to return to a more conventional gluten-free diet without a resurgence of symptoms, the authors wrote. I have to say: that hasn't been my experience, nor has it been the experience of people I know who are sensitive enough to trace gluten to warrant being on this restrictive a diet.
Center for Celiac Research director Dr. Alessio Fasano told me in an interview that the elimination diet seemed to give the immune system time to calm down, and that people were able to add back processed gluten-free products after a few months on the more restrictive diet. Two people in the study decided to stay on the elimination diet indefinitely because their symptoms returned and their lab results deteriorated when they added in more foods.
Of the 1,288 people with celiac disease seen at the center between 2005 and 2011, a total of 29 -- or 2.3% -- were instructed on how to follow the elimination diet because they had failed to improve on the standard gluten-free diet, the study said. The researchers did not include anyone with non-celiac gluten sensitivity in the study.
What are the take-home messages from this study? First, it's great to see acknowledgement that not everyone thrives on a "standard" gluten-free diet, which is something many of us have known for years (and a major reason people haunt various celiac forums, looking for any and all information on why they're not getting better).
Second, it is possible to eat a completely whole-foods diet and stop your symptoms ... but it takes lots of work. At least one person who started the diet stopped it prematurely because it was so restrictive -- that person decided just to live with the continual symptoms and elevated blood test results instead.
As I said above, it definitely hasn't been my experience that people who are quite sensitive to trace gluten (like me) can go back on a more "standard" gluten-free diet following a whole-foods diet.
However, I will say that my symptoms have improved significantly since I began following my own version of this elimination diet. For example, it's now possible for me to indulge occasionally in carefully chosen "gluten-free" grain products or processed foods and not suffer terrible symptoms (I definitely notice I've gotten some gluten, but I'm able to handle the relatively minor symptoms I get from these indulgences). I don't do this often, since to me, the brain fog, slight digestive ills, and sleep disturbances I get are not worth the piece of cake or pizza.
More on trace gluten:
- I'm eating gluten-free -- why do I still have symptoms?
- Foods Labeled 'Gluten-Free' May Still Contain Some Gluten
- Gluten in Gluten-Free Grains?
This is a great topic, and I hope to see more research on it ... especially research that includes people with non-celiac gluten sensitivity who have failed to resolve their symptoms on the gluten-free diet.
Photo © Getty Images/