Annual Holiday Party
Celiac Kids Connection 2020 Holiday Party!
Even though we can't all be together in person this year, we hope your family will still join us on Sunday December 6th at 12pm for some gluten-free virtual holiday cheer!
We will host a variety of activities throughout the day (cookie decorating, trivia, a scavenger hunt, and fun with DJ Mike!) Sign on for just one part of the virtual fun or join us for the full event!
As always, our holiday party is a members only event. That is to attend, you must be a member of Celiac Kids Connection.
Cost for a Family Ticket is $15 and includes a holiday cookie decorating kit, goodie bag, and access to all of the online festivities. Scholarships are available. We also hope your family will consider an extra donation this year to help support the ongoing work of our Boston Children's Hospital Celiac Kids Support Group.
Click Here for Tickets
New to Celiac Disease Parent Meet-up
Every Thursday from 1pm-2pm EST, our Boston Children’s Hospital Celiac Program hosts a live Zoom meeting for families to learn about all of the resources available through the Celiac Program at Boston Children’s Hospital and the Celiac Kids Connection Support Group. This is also a great time to ask any questions.
Feel free to bring your lunch to this meet-up!
Register Here
All Things Celiac – Maximizing Nutrition on the Gluten-Free Diet
Learn how to maximize nutrition for all stages of life on the gluten-free diet. The third series in “All Things Celiac” will feature celiac disease dietitians Tara McCarthy, MS, RDN, LDN, of Boston Children’s Hospital; Pam Cureton, RDN, LDN, of Massachusetts General Hospital; and Melinda Dennis, MS, RDN, LDN, of Beth Israel Deaconess Medical Center. They will showcase the nuances of gluten-free food labeling and highlight important nutrients, explain how to optimize the gluten-free diet when faced with other food restrictions, and share tips on how to enhance your diet and lifestyle for optimal digestion and health. Please submit general questions on the registration form or during the webinar on the Zoom platform.
Please note: This is an educational webinar and no information is intended for diagnosis or treatment of any medical condition. Please seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Continuing Education Units (CEUs): 1 CEU for Registered Dietitians (pending); 1.5 CEUS for Registered Nurses.
Register Here
Ask Dr. Weir – November 2020
Ask Dr. Weir
Dr. Dascha Weir
This month’s “Ask the Expert” features Dr. Dascha Weir, MD, Associate Director, The Celiac Disease Program, Boston Children’s Hospital. Dr. Weir answers questions about growth after the adoption of the gluten-free diet and the testing of siblings.
Question - My son was diagnosed with celiac disease because he wasn’t growing very well. How long does it take for the gluten-free diet to start working so we see progress in growth?
Dr. Weir - Poor growth is a common way for celiac disease to show up in children. In fact, more than 15% of all of the patients diagnosed with celiac disease at Boston Children’s Hospital have short stature or poor growth at the time of diagnosis. Untreated celiac disease can lead to poor growth by a complex interaction of malnutrition, inflammation and disruption of the endocrine growth system. When celiac disease is treated with the gluten-free (GF) diet, intestinal damage and inflammation heals over time, nutritional status improves and growth regulation is restored. Improved weight gain is seen sooner than accelerated linear growth. Catch-up growth is the rapid compensatory growth that happens in the setting of this healing and is maximal in the first 6 months on a gluten-free diet. The amount of growth to be expected depends on the age and pubertal stage at the time of diagnosis. If increased growth isn’t seen 6 months into the GF diet, reinvolvement of our pediatric specialized dietitians is important to ensure that a strict gluten free and calorically appropriate diet is being followed. If no catchup growth has occurred by 1 year on a GF diet, we often consult endocrinology to consider other causes of poor growth such as hypothyroidism or growth hormone deficiency. If you are worried about your child’s growth, reach out to your gastroenterologist to discuss your concerns.
Question - I have three children and only one is diagnosed with celiac disease. How many times do the other kids need to be tested? Is once enough?
Dr. Weir - Celiac disease can run in the family and is not something that you want to miss in your other kids. People with celiac disease can have varied symptoms, even within the same family. Additionally, some children with celiac disease have subtle symptoms that are hard to recognize, while others have no symptoms at all. When one child is diagnosed with celiac disease, it is important to test siblings at the time of diagnosis with a tissue transglutaminase IgA and a total IgA level. All siblings should be tested even if they don’t have symptoms. It is important to remember that celiac disease can turn on at any time in a genetically susceptible person. Because first degree family members are considered at somewhat higher risk to develop celiac disease in their lifetimes, we recommend retesting siblings for celiac disease every 3-5 years or sooner if any concerning symptoms develop.
Board Meeting
The Celiac Kids Connection board meets regularly to plan activities and set goals and objectives for our group..
All members are welcome to attend
Contact CeliacKidsConnection@childrens.harvard.edu for the Zoom link
Holiday Planning – Virtual
Holidays will likely look different in 2020. How do we adapt to the new reality and keep our menus GF?
RSVP for the Zoom link. Contact CeliacKidsConnection@childrens.harvard.edu if you have any questions.
New to Celiac – Virtual
Designed for families with a child newly diagnosed with celiac disease. After a brief presentation, we will answer your questions about transitioning to the GF lifestyle.
RSVP for the Zoom link. Contact Celiackidsconnection@childrens.harvard.edu if you have any questions.
Ask Dr. Weir
Ask Dr. Weir - October 2020
Dr. Dascha Weir
This month’s “Ask the Expert” features Dr. Dascha Weir, MD, Associate Director, The Celiac Disease Program, Boston Children’s Hospital. Dr. Weir answers questions about the flu vaccine and differentiating between COVID-19 and gluten exposure symptoms.
Question - Should patients with celiac disease still get vaccinated for the flu this fall? Is there a risk of this vaccine weakening the immune system toward COVID-19, if exposed?
Dr. Weir - This year, getting a flu vaccination is more important than ever.
Influenza, otherwise known as “the flu”, can cause serious life-threating illness in children and adults. Flu vaccination is the best way to prevent infection and severe influenza related illness. Public health experts are encouraging everyone to get a flu vaccine to help avoid a “twindemic”, an outbreak of both COVID-19 and influenza this season.
Flu symptoms are very similar to COVID-19 (such as fever, fatigue, cough, difficulty breathing, etc.). Even with a negative test, it can be difficult to be sure that a symptomatic person doesn’t have a COVID-19 infection. The overlapping symptoms of influenza and COVID-19 can contribute to confusion over the diagnosis. Preventing flu infection and avoiding this confusion is important. Reducing cases of influenza this year will help to avoid overloading our clinics, hospitals and healthcare systems and may help you and your family avoid isolation/quarantine precautionary protocols.
With increased mask wearing, hand washing and social distancing, we can all hope for a less severe flu season this year but the best way to ensure protection is vaccination. It is a simple but lifesaving task that will directly protect you, your family and the healthcare system.
There is no evidence that taking a flu vaccine will weaken the immune system to make a COVID-19 infection more likely.
Question - If my child’s main symptoms of a gluten exposure are vomiting or diarrhea, how do we differentiate if the symptoms are from a gluten exposure or possibly COVID-19? What are good ways to evaluate if we need medical attention or if we should be quarantining with these GI symptoms?
Dr. Weir - Unfortunately, there is no easy way to tell. Recent data, from Stanford University, shows that about 30% of adult patients with COVID-19 experience associated gastrointestinal symptoms. Most of these symptoms were mild but included vomiting and diarrhea. Importantly, no patients experienced only GI symptoms and none of them had GI symptoms as the first symptom. This means it’s important to look at other symptoms like a fever, cough, or loss of taste and/or smell, among many others, that may accompany the vomiting or diarrhea.
There is little available data on GI symptoms in children with COVID-19 but if your child is experiencing symptoms, you should reach out to your primary care provider/pediatrician to discuss the potential need for COVID-19 testing. If you think your child has been exposed to gluten or if they have new GI symptoms, please reach out to your gastroenterologist or dietitian.
Board Meeting