Seattle Children’s Launches New Celiac Disease Program: A Q&A with Dr. Dale Lee

Seattle Children’s recently launched a new Celiac Disease Program within its Gastroenterology Division. This program gives patients access to physicians and registered dietitians specially trained and experienced in working with pediatric patients with celiac disease.

Dr. Dale Lee, director of the Celiac Disease Program, addresses questions related to celiac disease, the new program and services it offers.

Thank you to Dr. Wendy Sue Swanson, a pediatrician at The Everett Clinic in Mill Creek, a member of Seattle Children’s medical staff and executive director of Digital Health, and author of the Seattle Mama Doc blog, for submitting these questions.

There is certainly public interest in gluten-free diets. Help us put in context those who seem to feel healthier and happier off gluten, and those who must be off gluten.

Gluten is commonplace in our modern diet and individuals can have a variety of conditions related to gluten.

• Celiac disease is an immune-mediated hypersensitivity to gluten that results in intestinal inflammation/damage that can occur in certain genetically susceptible individuals.
• Wheat allergy is different than celiac disease, but is also immune-mediated and can result in a variety of symptoms including rash, abdominal pain, vomiting or breathing difficulties.
• Non-celiac gluten sensitivity (also referred to as “gluten intolerance”) does not involve an immunological response, but the symptoms can be similar to celiac disease, such as abdominal pain, vomiting or diarrhea.

Many people say they feel better off of gluten-containing foods, but this does not necessarily mean they have celiac disease, wheat allergy or non-celiac gluten sensitivity.

Gluten is present in many refined and processed foods. Avoidance of gluten may result in a diet with greater emphasis on healthy whole foods and less processed foods. As such, it may be that inclusion of a greater proportion of healthier whole foods is playing an important role in feeling better.

Can you give us an overview of kids who should be screened for celiac disease?

Celiac disease is present in approximately 1 in 100 individuals. Symptoms that should trigger testing for celiac disease include abdominal pain, vomiting, diarrhea, constipation, poor weight gain, poor height gain, rash or unexplained fatigue.

In addition, certain conditions are associated with an increased risk of developing celiac disease, including type 1 diabetes mellitus, autoimmune thyroid disease, Down’s syndrome, Turner syndrome or Williams syndrome. First degree relatives of an individual with celiac disease should also be screened, as their risk of having celiac disease is approximately 5%.

IgA and tTG blood serum testing is initial screening and standard of care. Can you review sensitivities by age, recommendations by age, and when, if ever, to repeat testing?

Screening for celiac disease is based upon tissue transglutaminase (tTG) IgA level. It is also important that the individual is verified to have a normal total serum IgA level.

TTG IgA is highly sensitive and specific (>95% for both), and is the first-line screening test. In children less than 3 years of age, we will often check both tTG and deamidated gliadian peptide (DGP) IgA and IgG. For younger children and for those with IgA deficiency, DGP IgA and IgG are preferred tests.

If individuals have previously screened negative for celiac disease but have risk factors or symptoms that are concerning, repeat serological testing is merited. Repeating these tests can be valuable because celiac disease can develop at any age.

On occasion, testing for genetic susceptibility (i.e., predisposing HLA genotypes) to developing celiac disease is used in individuals with an unclear diagnosis of celiac disease, or in at-risk populations requiring repeat serologic screening.

Does every child diagnosed in outpatient clinic need to see you? Why and what do you do in clinic?

Celiac disease is a chronic illness, but can be managed well with appropriate guidance and support. Strict restriction of gluten is central to the treatment of celiac disease, and partnering with a gastroenterologist and dietitian is important for making the correct diagnosis, providing detailed education/support and also for ongoing monitoring of the disease.

We developed our Celiac Disease Program because we felt we had an opportunity to provide better care for our patients and resources to our community. The Celiac Disease Program is a multidisciplinary team which includes physicians, advanced practice providers (APP), dietitians, nurses, social workers and laboratory medicine staff members.

We will meet families in clinic, make the appropriate diagnosis, and partner with the patient, their family and primary care provider to help manage this life-long medical condition. Strict dietary restrictions can have a profound impact on developing children, and our goal is to help patients and families learn to successfully manage and function with celiac disease.

In addition to the medical and dietary management, Seattle Children’s will host quarterly support groups for families with celiac disease. These sessions will involve a brief presentation, but focus predominantly on structured sharing of experience about the difficulties and successes of living with celiac disease.

Not every patient with celiac disease will be seen in our celiac disease program, but we will provide resources and materials to the GI provider caring for the patient, and we will also encourage families to take part in the support group and future educational activities.

What online resources do you have for families, including information on diagnosis and support, and dietary education?

We are in the process of re-vamping the Seattle Children’s online resources for celiac disease. Keep an eye on our Celiac Disease web page for the latest information. You can visit our Support Groups page to learn more about the Celiac Support Group, including how to register a patient for the group.

Other online resources we would recommend include the National Institutes of Health, Celiac Disease Foundation, Freeda Vitamins, and the Gluten Intolerance Group.

If you have a patient you’d like to refer, fax a New Appointment Request Form (NARF) to 206-985-3121 or 866-985-3121 (toll-free). Please include the NARF, chart notes and any relevant documentation. View our complete Gastroenterology and Hepatology referral guidelines.