TTG IGA, DGP IGG, IGG EMA…do you ever feel like you’re making alphabet soup trying to diagnose Celiac Disease? Listen to our episode with our special guest, Dr. Dale Lee from Seattle Children’s, as he teaches us how to diagnose, manage, and treat Celiac Disease. Dr. Lee will teach us how almost any symptom can mimic Celiac, and why going gluten-free is so important!
Symptoms may look very similar between all 3; however, gluten/wheat sensitivity would not show any increased inflammatory markers or abnormal biopsies. A gluten/wheat allergy might have some serologic inflammation but no GI tract inflammation on biopsy.
Bimodal presentation: In childhood around ages 8-10 and in adulthood around ages 30-40
Wide variety of presentations – our expert guest calls Celiac the Great Mimicker. Symptoms can be very diverse, e.g.:
– GI: abdominal pain, discomfort, distention, constipation, but NO hematochezia
– Neuro: difficulty focusing, migraines
– MSK: rash, joint pain, bone fractures
– Constitutional: faltering growth
– Asymptomatic (at least 10%)
In adults, Celiac often presents with vague symptoms and providers do not think about growth as much. Can be misdiagnosed as IBS or MSK etiology.
Family history is very important! 1st degree relatives with Celiac Disease increases your chance of developing CD to 5-11%, so all 1st degree relatives of a new diagnosis should be screened. Other family history of autoimmune diseases also elevates risk, but it’s unclear exactly how much.
In most practice, serology is used for screening and endoscopic biopsies are used as the definitive test. Per Dr. Lee, the threshold to test should be super low because screening is easy and the symptoms can be so variable.
Without 100% sensitivity, there will always be serology-negative celiac disease. Therefore, negative serology should not stop further testing if celiac is still suspected.
Providers often screen for celiac with new diagnoses of other autoimmune diseases, such as type 1 diabetes. However, the TTG IgA may be falsely elevated due to high levels of inflammation from the new autoimmune disease. Unless it’s an extreme elevation, the PCP or endocrinologist can trend this titer over a few months to see if it resolves before referring to GI because it could be a false positive.
It can be difficult to convince a patient to adhere to a strict gluten-free diet if they feel asymptomatic. However, gluten leads to continuous inflammation, which can affect growth, nutrition, bone mineralization, small bowel cancers, and elevated risk of other autoimmune conditions (Gastroenterology 1999).
Gluten in concentrations of over >20 PPM is considered significant (according to the National Celiac Association). This equates to about 10mg of gluten a day, which is the minimum level for continuous villous atrophy (American Journal Clinical Nutrition 2007). To put this in perspective, a slice of bread contains approximately 3,500mg of gluten. Thus, the mainstay of treatment is to remove gluten entirely. Patients should also be aware of cross-contamination or cross-contact (studies ongoing to determine specific inflammatory risk of cross-contamination in these small amounts).
Expert opinion: A gluten-free diet can be very restrictive. It is a tricky balance between reducing gluten (to reduce inflammation and its sequelae), and also supporting our patients, being careful not to induce disordered eating or anxiety around foods. It’s important to learn the principles, but acknowledge and validate that no one can be perfect.
Expert practice: There are “4 pillars” of Celiac management and monitoring if a patient is responding to a gluten-free diet:
Refractory Celiac Disease – adherence to a gluten-free diet without improvement – is very rare in pediatrics. This can happen in adults as a separate T-cell mediated immunologic process. If a child isn’t responding to the gluten-free diet, it is more likely they are either a) intentionally or unintentionally including gluten in their diet, or b) have a concurrent infection, such as H. Pylori.
Currently there are no pharmacological treatments for Celiac Disease. Some places may sell enzymes that digest gluten, but these need more research and are not approved for wider use as of summer 2023. There are many drug trials in process, with mechanisms that either degrade gluten, bind it to keep it in the intestinal lumen, prevent absorbing it, or alter the body’s immunologic response.
Listeners will explain the serologic and pathologic diagnosis, treatment, and monitoring progress of Celiac Disease in the outpatient setting.
After listening to this episode listeners will…
Dr Lee has been a consultant for Takeda Pharmaceuticals and Schiper Medicine. No trade names have been used and all discussion is not relevant to consulting work. The Cribsiders report no relevant financial disclosures.
Zhang AY, Lee D, Masur S, Chiu C, Berk J. “#89: Celiac Disease – The Great Mimicker”. The Cribsiders Pediatric Podcast. https:/www.thecribsiders.com/ July 19, 2023.
Producer, Writer, Infographic: Angela Y. Zhang, MD
Showrunner: Sam Masur MD
Cover Art: Chris Chiu MD
Hosts: Chris Chiu MD, Angela Y. Zhang MD
Editor: Clair Morgan of nodderly.com
Guest(s): Dale Lee MD MSCE
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