I’ve been so busy learning new information about celiac disease and non celiac-gluten sensitivity that I haven’t had a chance to post for a while. I was fortunate to be one of 30 practitioners selected for the 2014 Preceptorship Program at the University of Chicago Celiac Disease Center, which took place 12/4-12/5. We had an intense 2 days filled with lectures on topics ranging from “The Pathology of Celiac Disease” to “Celiac Disease and the Skin” to “Celiac Disease and Developmental Disorders.” I was also able to spend time with Dr. Guandalini in the pediatric celiac clinic at the University of Chicago. Overall it was a great experience and I learned a TON about this disease which I hope to be able to share in upcoming months with other doctors, nurses, patients, friends and family, and all of you.
As both a pediatrician and mother of 4 children who are all at high risk of eventually developing celiac disease, I was especially interested in Dr. Guandalini’s lecture entitled “Celiac Disease: Update on the Pediatric Perspective.” Here are some of the “take home” points of Dr. Guandalini’s presentation.
- The incidence of celiac disease is definitely increasing. In 1990 5.2/100,000 Americans had celiac disease. In 2010 19.1/100,000 did.
- The increases in celiac disease appears to be multifactorial and may be related to antibiotic use, Western diet, elimination of H pylori from GI tracts, birth by c-section, infant feeding practices, and reduced exposures to infections during childhood. The final common pathway appears to be a change in microbiota (bacterial balance), or dysbiosis, in genetically predisposed individuals.
- He emphasized that glycophosphate, also known as “Round Up,” does not cause celiac disease, and used this as an example of the misinformation that is found online.
- Children who carry 2 copies of the HLA-DQ2 gene are at very high risk of developing celiac disease. By age 5 to 6, 40% of homozygous DQ2 children have celiac autoimmunity, and approximately 25% have celiac disease. I specifically asked Dr. Guandalini about the significance of celiac disease autoimmunity (positive celiac antibodies) v. celiac disease and I was told that it needs to be taken as seriously as celiac disease in kids, i.e. these kids need to be gluten free.
- All of the following disorders are associated with celiac disease: gastrosophageal reflux, eosinophilic esophagitis, seziures, asthma, kidney stones, restless leg syndrome, sarcoidosis, psoriasis, vitiligo, idiopathic thrombocytopenia purpura (ITP), idiopathic dilated cardiomyopathy, hyperparathyroidism, and multiple sclerosis.
- Based on recent studies, breastfeeding, and length of breastfeeding, do not seem to have any effect on preventing or delaying the development of celiac disease. Breastfeeding at the time of gluten introduction does not appear to make a difference either.
- Also, based on recent research, the optimal time to introduce gluten to an infant is at about 6 months of age. Delaying gluten introduction until after 12 months does not prevent celiac disease in children, nor does early introduction (4-6 months).
- Children can be diagnosed with celiac disease without undergoing an endoscopy and biopsy if they all of the following: symptoms, a TTG IgA antibody level that is greater than 10x normal, and a positive EMA IgA antibody titer. If the EMA IgA is negative, then a small bowel biopsy must be performed to confirm diagnosis.
- There is no reliable method to detect celiac disease antibodies from stool samples.
- Most doctors re-check TTG IgA antibodies in kids after 3-4 months on the GF diet. TTG IgA levels decrease in 75% of children after 3 months on the GF diet but it can take longer to normalize, especially if the level is sky high at the time of diagnosis.
- Children who are newly diagnosed with celiac disease should have all of the following monitored: Vitamin D level, complete blood count, iron studies, thyroid function studies, and close monitoring of growth (weight, height, and body mass index).
- Children with celiac disease experience rapid small bowel healing compared to adults. Almost 90% show remission after 1 year on the gluten-free diet.
- Kids who are at risk of celiac disease but do not have symptoms should be screened at age 3 and then every 3 years (obviously sooner if symptoms develop)–I put this in bold because this is a question that I’ve had a very difficult time finding an answer to over the years.
I hope to be able to post more information that I learned at the preceptorship over the next few months. In the meantime please let me know if you have any questions or need me to clarify anything that I wrote about above. As you know, it’s the holiday season, and we are starting to plan our cross-country move, so my mind is being pulled in a million directions right now! Thank you for understanding.