Celiac disease FAQ's

After diagnosis how often should I get my labs checked and how long should it take for them to normalize?

Labs checked every 3-6 months to ensure downtrending, then yearly after that. It can take 2 years to normalize. The higher they are to start with, the longer they can take to fully normalize. As long as the labs continue to downtrend, it means things are on the right track

Are there new developments for celiac disease?

Lots! There are enzymes (similar to Lactaid) on the market that allow patients to digest small amounts of gluten. These are best used when patients are trying to avoid contamination in their diet, as they do not digest large amounts of gluten. There is a product on the market that can measure gluten in the urine and stool, which can detect or confirm accidental ingestion. There is a vaccine in development that would allow patients to consume gluten. There is also a test that might be able to diagnose celiac disease when a patient is not eating gluten. Finally, there are a few drugs in clinical trials that are trying to alter the pathogenesis of celiac disease.

Can I stop my child from eating gluten before seeing the doctor?

Ideally, we should obtain the patient's celiac serologies before they stop eating gluten. This will help clarify if they have celiac disease or gluten sensitivity. If the celiac serologies are abnormal, they should be referred to a pediatric gastroenterologist for a likely scope. For the scope to be accurate, the patient needs to keep eating gluten. North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) guidelines suggest two pieces of bread a day is enough to have accurate biopsy results.

How is celiac disease diagnosed?

A typical diagnosis is made with abnormal celiac serologies and an abnormal intestinal biopsy. There are many celiac serologies, which include the anti-gliadin antibody (AGA), deaminated gliadin peptide (DGP) antibody and tissue transglutaminase (TTG) antibody, all of which have an IgG and IgA test. The sensitivity and specificity of the serologies are different, and as such, current recommendations are to only get the TTG IgA antibody, along with the total IgA. Patients who are IgA deficient may not mount an appropriate TTG IgA antibody response, and in these cases, the TTG IgG antibody should be obtained. For patients under 2 years old, the DGP IgG antibody should be obtained along with the TTG IgA antibody.

If my child is diagnosed with celiac disease, do my other kids need to be checked for it?

First-degree relatives of patients with celiac disease should be screened. European guidelines suggest starting with celiac genetics because, if they are negative, you can stop screening. However, not all insurance covers genetic testing for celiac disease, and siblings of patients with celiac disease often have the genetics that put them at risk for celiac disease, making the test less helpful. Another option is to obtain the TTG IgA every three years, or sooner if symptoms develop, once the patient is 3 years old. High-risk patients should also be screened for celiac disease according to their society guidelines.

Is a scope really necessary to diagnose celiac disease?

The European guidelines indicate that the diagnosis of celiac disease can be made with elevated celiac serologies >10x normal, positive celiac genetics and a positive anti-endomysial IgA antibody (EMA). NASPGHAN (North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition) recognized the European criteria without affirming it, citing celiac disease as a lifelong diagnosis with associated disorders, such as H. pylori and eosinophilic esophagitis, that can be diagnosed on biopsy.

Is there a way to test for celiac disease if my child isn’t eating gluten?

If your child is consuming at least a couple crackers per day, an upper scope should be able to identify celiac disease. If your child is eating at least two pieces of bread a day, the lab tests should be accurate as well.

If your child isn't eating any gluten, you can consider genetic testing for celiac disease. While 20 to 30 percent of the population has genes that put them at risk for celiac disease, if the genetic testing is negative, this essentially rules out celiac disease (a positive test does NOT mean your child has celiac disease, but a negative test rules it out). Genetic testing, however, can be expensive and may not be covered by insurance, so you should check before getting the test. Certain services, such as 23 & Me, include the celiac genetics testing on its panel.

My child was diagnosed with celiac disease, but has no symptoms. Do they need a gluten-free diet?

The short answer is yes. Untreated celiac disease can lead to both GI and EI symptoms down the road. Symptoms such as osteoporosis, iron-deficiency anemia and short stature can develop. In addition, the risk of intestinal lymphoma, while low, is increased by about three to six times in untreated celiac disease.

What about gluten sensitivity?

The number of people in the United States (without celiac disease or wheat allergy) who are avoiding gluten is going up significantly. People are doing this for perceived health reasons, or because it makes them feel better. The literature on gluten sensitivity in pediatrics is limited. The prevalence is variable, and there are no lab tests, guidelines or treatment recommendations. Some new literature indicates that fructans, a carbohydrate found in many foods that contain gluten, may be the cause of irritable bowel symptoms rather than gluten. Patients on a gluten-free diet should take a multi-vitamin.

What if the celiac serologies do not correspond with the intestinal biopsies?

Not all elevations in TTG IgA are celiac disease, and not all villous atrophy is celiac disease. In these patients, potential celiac disease and other etiologies need to be considered. These patients should be referred to a pediatric gastroenterologist with expertise in celiac disease.

What is celiac disease?

Celiac disease is the abnormal immune response to the ingestion of gluten (found in wheat, barley and rye). Symptoms within the GI tract can include abdominal pain, diarrhea, vomiting, weight loss and failure to thrive. Extra-intestinal (EI) manifestations can include iron-deficiency anemia, osteoporosis, arthritis, headaches and dermatitis herpetiformis. EI symptoms typically present after the age of 5. GI and EI symptoms typically resolve in 12 to 24 months once the patient is on a gluten free diet.

Will I need a follow up scope after starting the gluten free diet?

Most likely not! Routine or scheduled scopes not required, as a gluten diet most often diet leads to healing in the mucosal tissue. However, if your child continues to have any symptoms, or the labs are not normalizing, then a repeat scope might help figure out what's going on.