Unfortunately, many adults’ small intestines never fully recover from the damage inflicted by celiac disease (children with celiac diseasegenerally do make a full recovery). But the good news is that you’ll probably feel pretty healthy anyway.
When you have celiac disease, the gluten protein found in the grains wheat, barley and rye incites your immune system to attack the lining of your small intestine.
This results in what’s called villous atrophy, where your tiny, finger-like intestinal villi literally wear away as a result of this attack, leaving you unable to properly digest food.
Once you’re diagnosed with celiac disease and begin the gluten-free diet, your villi generally start to heal. But several studies have shown that your small intestine may not heal completely, even if you’re following a very careful diet and aren’t cheating.
Study: Two-Thirds Recovered in Five Years
One study, conducted at the Mayo Clinic in Minnesota and published in 2010, reviewed intestinal biopsy records for 241 adults who’d been diagnosed with celiac disease, and who then had a follow-up biopsy.
More than four out of five of those celiacs experienced what doctors call a “clinical response” to the diet — in other words, their celiac disease symptoms got better or disappeared entirely. But after two years, their biopsies showed that only about one-third had intestinal villi that had recovered fully.
After five years, about two-thirds had fully recovered intestinal villi.
People who cheated on the diet were more likely to have persistent damage, but so were people who didn’t cheat but who had severe diarrhea and weight loss and/or total villous atrophy (in other words, worse-than-average symptoms and/or damage) at diagnosis.
Interestingly, four people in the study who didn’t follow the gluten-free diet carefully at all nonetheless had fully recovered villi. (Don’t try this at home: the researchers warned that they still risked renewed damage and complications of celiac disease over time.)
An Australian study, where standards for gluten-free food labeling are much stricter than in the United States, found that celiacs’ intestinal villi tended to improve for six to 12 months after the start of a gluten-free diet, but then plateaued at a level far below that of people without celiac disease.
Why Don’t People Recover Fully?
That’s not clear, but the Mayo Clinic researchers speculated that continuous low-level gluten cross-contamination or inadvertent consumption of hidden gluten could be to blame. Other factors could include genetics, age and the duration of gluten exposure before diagnosis.
There’s also some evidence that adults in other countries recover more quickly and fully than those in the U.S., which led the Mayo Clinic researchers to hypothesize that the “American lifestyle,” with its frequent dining out and easy access to fast food (and consequent gluten exposure), makes it more difficult for U.S.
adults to consume a clean enough diet to recover completely.
Does all this matter? It might: the degree to which your small intestine recovers may impact whether you die early or not. Researchers have found some evidence that celiacs whose intestinal villi don’t heal completely have higher premature death rates. But other studies have not identified such a link.
Of course, in a few people, even a strict gluten-free diet fails to heal the villi at all. In these rare cases, doctors will diagnose refractory celiac disease and take alternate steps, including medication, in an effort to calm the autoimmune reaction.