Children treated for celiac heal faster than adults. In a study at the University of Chicago, most patients reported improved symptoms after two years on a gluten-free diet. However, gastrointestinal complaints like bloating and diarrhea resolved better than non-digestive problems like fatigue.
The study tracked 554 celiac patients—227 children and 227 adults. When first diagnosed, 78 percent of children and 91 percent of adults had at least one classic digestive complaint: abdominal pain, diarrhea, bloating, failure to thrive in children, weight loss in adults or constipation. Extra-intestinal symptoms appeared alongside or sometimes on their own: headache, fatigue, iron deficiency anemia and psychiatric disorders. Three percent of adults and 10 percent of children diagnosed through screening had no symptoms.
After two years of treatment, both groups showed high rates of gastrointestinal improvement. Bloating, diarrhea, weight loss and abdominal pain had each resolved by at least 81 percent in children and 71 percent in adults. Extra-intestinally, children recovered well from poor mood and anemia, less so from short stature and psychiatric disorders. Adult anemia resolved well, but poor mood and muscle pain improved by only 50 percent.
Hilary Jericho, MD, says a key message is patients need an appropriate expectation for the speed of recovery. She is director of pediatric clinical research at University of Chicago Celiac Disease Center, where she and colleagues collected data from patients treated between 2002 and 2015.
“Patients come to me for a second opinion because they were diagnosed with celiac disease three months ago. They went on the gluten-free diet and their symptoms have not fully resolved,” says Jericho. “Maybe the wrong expectation was set here. If you are a child, you have a very good chance of complete resolution. Sometimes it is going to take 12 to 24 months.”
Joseph Murray, MD, who runs the celiac disease research and clinical program at Mayo Clinic in Rochester, Minnesota, says this offers new insight about symptoms and recovery. Gastroenterologists know more about digestive problems but less about how manifestations like fatigue respond to a gluten-free diet. The study distinguishes how they progress and compares the response between children and adults.
Going gluten free is not easy for anyone, but newly diagnosed adults face particular challenges, Murray says. Old eating habits are hard to change. The diet presents social, psychological and practical difficulties. Adults have already been exposed to gluten for decades. Chronic inflammation may take longer to heal. These factors affect dietary adherence and recovery.
“Kids are very resilient,” says Jericho.
Maureen Leonard, MD, clinical director of the Center for Celiac Research and Treatment at Massachusetts General Hospital for Children, Boston, also welcomes the findings: “It is really helpful to tell children we see in our clinic that most kids feel better once they start a gluten-free diet.”
However, a few patients recovered poorly. Eight percent of children and 12 percent of adults did not follow a gluten-free diet. Most of these patients had ongoing symptoms.
Even among those who went gluten free, one-third of children and half of adults reported at least one persistent symptom, but that does not mean a lack of improvement, according to Murray.
“Persistence doesn’t necessarily take account of severity,” he says. “If I have headaches every single day because of celiac disease and after a year or two on a gluten-free diet I still have headaches but only once every two weeks, that is persistent but not anywhere near as bad.”
If symptoms do not improve, the patient should return to the doctor and make sure the diet is truly gluten free, says Jericho. Restaurants and processed foods can contain unrecognized contamination.
However, poor recovery often reveals different illnesses occurring alongside celiac. Doctors call these comorbidities.
A previous study of the same patient records found 28 percent of children who responded poorly to the diet had comorbidities. Genetic disorders like Turner syndrome are common in the celiac population. So are other autoimmune conditions, like thyroid disease. Jericho recommends close follow-up with a doctor to detect these in children.
Leonard agrees: “Patients need dietary reinforcement, so they should see a dietitian once a year. They should see a gastroenterologist to look for signs of ongoing celiac disease or comorbidities.”
Jericho says with patients recovering poorly, she uses follow-up blood tests to ensure celiac antibodies return to normal. She might also conduct endoscopies to inspect the gut lining. These tests normally reveal a healed gut, she says, prompting her to look for comorbidities.
The study only measured symptom recovery, not intestinal healing directly. Use of blood tests to track recovery is gaining popularity, but many experts express skepticism. Follow-up biopsies remain common practice at some referral centers. A 2016 study at Massachusetts General Hospital found blood tests poorly predicted gut healing as revealed by biopsy.
Leonard, who participated in that research, says relying on whether a patient feels better highlights a major issue in celiac research.
“What is our treatment endpoint for patients with celiac disease?” she asks, arguing the research community needs more data to answer the question. “Should we focus on symptoms, on what the serology tests show, on mucosal healing or a mixture of all three?”
“While the antibodies are very robust for diagnosis, they are not as good for monitoring [recovery] as we believed before,” says Alessio Fasano, MD, a co-author with Leonard of the 2016 study and director of the Center for Celiac Research and Treatment at Massachusetts General Hospital. “We need to see that the symptoms are gone and the intestine is healed. That gives a great level of confidence that the autoimmune process is completely under control.”
Jericho has a different view: “It would be over-reactive to re-biopsy all these patients and expose children to the risks of anesthesia and of having a second procedure, when, at the end of the day, most kids respond very well to the gluten-free diet and have good gut healing.”
What can a gluten-free diet treat?
A gluten-free diet is the only treatment for:
- celiac disease
- non-celiac gluten sensitivity
- wheat allergy
Some studies support screening patients with certain genetic and autoimmune disorders for celiac. These include:
- type 1 diabetes
- Crohn’s disease
- thyroid disease
- autoimmune liver disease
- Down syndrome
- Turner syndrome
Some doctors might recommend a gluten-free diet to treat other conditions, but the science remains inconclusive for:
- irritable bowel syndrome (IBS)
- rheumatoid arthritis
Patients should consult a gastroenterologist to diagnose celiac or rule it out before adopting a gluten-free diet to treat other illnesses.
Van Waffle is a freelance journalist based in Waterloo, Canada, and research editor for Gluten-Free Living.