Monthly Board Meeting

Francie KelleyLeave a Comment

ALL MEMBERS ARE WELCOME!

Our Celiac Kids Connection board of directors meets regularly to plan activities and set the goals and objectives for our group. Attending a board meeting is a great way to learn more about us, our activities and how we operate. All members are welcome to attend and we love having your input.

Contact us by email at CeliacKidsConnection@childrens.harvard.edu for the Zoom link.

We hope to “see” you there.

Living with Celiac Disease at College

Francie KelleyLeave a Comment

Looking for support with living with celiac disease while in college?

Join @BostonChildrens @CeliacKidsConnection is hosting a special Instagram live with celiac college students @carolinecooksgf @isha.icecream and @alex.weinsten to discuss tips and tricks for navigating college life on a gluten-free diet. CKC board member @glutenfree.Dave will host the chat.

COVID-19 Vaccine is Now Available for Kids Ages 5 & Up

The COVID-19 vaccine is now available for kids ages 5 and up at Boston Children’s Hospital. This vaccine is safe and recommended for kids with celiac disease. There is no gluten in the COVID vaccine

Watch this TikTok video where our Boston Children’s Hospital Celiac Disease Program team talk about the vaccine, what to expect, and how to schedule an appointment for your child’s shot.

Candy List Updated for 2021

Celiac Kids Connection’s annual candy list has been updated for 2021.

As we look towards Halloween and the holiday season, we hope you will find this helpful. If you have any questions, all of the candies on our list include contact information for the manufacturer.

Remember, ingredients are subject to change and you should rely on the ingredient list on the product you are purchasing.

Host a Gluten-Free Food Drive

The gluten-free diet is expensive which makes accessing gluten-free food products difficult for many families. On top of that many local food pantries do not have sufficient access to gluten-free products.

You can join in our efforts to support our larger gluten-free community by hosting a gluten-free food drive. You can do this as a family, as part of a school organization or a community group. Contact us to get started hosting a gluten-free food drive. We will provide all the tools you need to host a food drive. This includes flyers, products suggestions and more.

Thank you for your support of the gluten-free community.

Sign-up Here to Learn More!

    Ask Dr. Weir – September 2021

    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 gluten in personal care products and how to help your child after an accidental gluten exposure.

    Question – I feel like we have finally gotten a handle on which foods are gluten-free (GF) and which are not GF. Then I read an article that suggested that in addition to food, I need to make sure my child is not exposed to gluten in soap, lotions, make-up and other personal care products? Do I also need to verify the GF status of my child’s personal care products?


    Dr. Weir – It is important to remember that gluten needs to be ingested to cause immune activation and the small intestine inflammation and damage associated with celiac disease. People with celiac disease do not need to worry about gluten being absorbed through their skin.  However, many families worry that gluten in personal care products will make its way into their child’s GI tract.  While there could be potential exposure in some scenarios (for example, a child putting their fingers in their mouth or drinking bathwater), it is unlikely that significant amounts of gluten would be ingested in these situations because typically personal care products do not contain large loads of gluten. If a personal care product that your family uses has a gluten containing ingredient, you may choose to use an alternative product if one is available. However, you do not need to stick to certified gluten-free products only.  As always, we recommend hand-washing with soap and water before eating as another way to reduce small gluten exposures and spread of infection!  If your child is not doing well or you have specific concerns about their sensitivity to products, please reach out to your celiac team to discuss.

     
    Question – My child went to a birthday party and ate one of the gluten containing snacks by mistake. She only ate a small amount when she realized her mistake. But she was still ill later that evening. For future mistakes, is there an over the counter medication that I can give her to lessen the impact of her exposure to gluten?


    Dr. Weir – This is a common scenario that most families with a child with celiac disease have experienced at some point in time.  Even with all the planning, effort and vigilance that families put into avoiding gluten, mistakes can still happen. Kids with celiac disease have a wide range of symptoms when they ingest gluten. Typically, the symptoms are short-lived and get better with time and supportive measures such as rest, good hydration or curling up with a warm hot-water bottle.  Tylenol (acetaminophen) may be indicated to treat a headache or abdominal pain. If a child experiences significant vomiting with gluten exposure, some gastroenterologist will recommend a fast-acting anti-nausea prescription such as Zofran (ondansetron).  While there are over the counter medications available that claim to break down gluten, we do not recommend them for people with celiac disease either to prevent an exposure or to treat one. Increased and better options for treating children for gluten exposure may be available in the future as scientific discovery and medical practice is always advancing.

    Does Pregnancy Induce Celiac Symptoms? Researchers Are Trying to Find Out

    A study team at Beth Israel Deaconess Medical Center led by Dr. Amelie Therrien is conducting a study that aims to observe, understand and determine the frequency of celiac-related symptoms and the impact on the quality of life in patients living with celiac disease during their pregnancy and the postpartum period.

    You are invited to participate in this study if you are a woman with an established celiac disease diagnosis who has been following a gluten-free diet for at least 12 months. We are enrolling some women with celiac disease who are pregnant and some women who are not currently pregnant. Women who are currently pregnant and don’t have a celiac disease diagnosis may also be eligible for the study.

    If you choose to participate in the study, you will be asked to complete a survey and provide stool samples at specific time points. For more information, please contact cdpreg@bidmc.harvard.edu

    GF Faves Club, a meet up for middle and high school students

    Francie KelleyLeave a Comment

    Gluten-Free Faves Club is a celiac twist on the traditional book club. We meet monthly to discuss favorite gluten-free items centered on a theme. This is an informal and virtual gathering to get to know each other and share experiences.

    Bring your questions and share your experiences. There is a lot we can learn from each other.

     

    Please Join Us!