Ask Dr. Chang – September 2023

This month’s “Ask the Expert” features Dr. Denis Chang from the Celiac Disease Program, Boston Children’s Hospital. Dr. Chang answers questions about how eating a little bit of gluten.

Read the answer below or watch Dr. Chang.

Question – My friends hang out at a lot of places that don’t have great gluten-free (GF) options. How much damage would it cause to my intestines if I ate gluten once a month? Would it matter if it was just a little bit vs. a whole meal of gluten?


Dr. Chang –
We know that celiac disease (CD) is a lifelong autoimmune condition where gluten ingestion can lead to damage or inflammation of the small intestine. While we know that a lot of people do a really great job being on a GF diet, we know that sometimes accidental or unintentional exposures to gluten can happen. When it does the body can recover and symptoms of present will get better.

However I’d be concerned if one of my patients asked me if it would be okay to have gluten once in a while. To start, I’d be worried that that once in a while would become twice in a month then three time in a month and maybe even more. We just don’t know what the long term implications are of intermittent gluten exposures in people with CD. We know that there are many complications associated with untreated CD. For those reasons, we recommend avoiding gluten at all times. Secondly, we also know that some people can have symptoms with gluten. This is especially true after being on a GF diet for a while as the body is healing. We know that the amount of gluten that they had can lead to the severity of the symptoms they experience. And so for all those reasons we recommend a strict GF diet.

Ask Sharon Weston – August 2023

This month’s “Ask the Expert” features clinical dietician Sharon Weston. Sharon answers a question about replacing items in your kitchen after a celiac disease diagnosis.

Read the answer below or listen to Sharon’s advice.

Question – What do you recommend for a newly diagnosed 3-year-old? Do I need to replace all of my sippy cups, plates and utensils?


Sharon Weston –
The answer is no. You can certainly make sure that everything is very well washed and cleaned by putting things in your dishwasher. Think of gluten as raw chicken. You should clean items exposed to gluten in the same manner as you would clean your cutting board or other items if they were exposed to raw chicken.

Use hot soapy water, get a good scrub brush or use your dishwasher and you should be able to use all of those items.

Celiac Awareness Month – Emma Sullivan’s Celiac Journey

By Francie Kelley, Executive Director, Celiac Kids Connection

Recently I spoke with Jessica Sullivan about her incredible daughter Emma. Emma Sullivan is 11 years old and they live in New Hampshire. She is very creative; enjoying drawing and artistic pursuits. She is also a cheerleader and she LOVES animals.

Emma has been living with celiac disease for 6 years. In addition, she has other food allergies and dietary restrictions. In spite of all her restrictions, Emma is resilient. She is empowered by her disease not held back by it. She is great about advocating for herself but admits it did take some time for her to become comfortable doing this.

The hardest part about living with dietary restrictions for Emma has been the social impact. She has to plan ahead for going out with friends, birthday and holiday celebrations. It is particularly hard when someone brings treats to school and there is no advance notice.

A bonus to having dietary restrictions is that the whole family is eating healthier. They think a lot more about food and of course spend a lot of time reading labels. This is been really eye-opening to see how the “same” food item can have such variations in ingredients.

During this celiac awareness month Emma and her family want to bring light to celiac disease by spreading the word. To this end, they are sharing daily facts about celiac disease on social media. You can find them on Instagram by searching for #giveglutenabootin.

There are 2 major things that they wish to share. First, they want people to understand that celiac disease is not an allergy. Second, when you bring food to an event for kids remember the kids with special diets. People bring treats for sharing to school, sports or church events. They do this as a kindness. They do this in order for the kids to celebrate. But when you bring treats there will be kids in the group who have celiac disease, allergies or other dietary restrictions. They are often the quiet kid in the back who is afraid to speak up and advocate for themselves or simply do not want the person who brought the treat to feel bad. So the next time you are bringing food to share with kids, remember these kids with special diets.

Celiac Awareness Month – Our Journey with Celiac Disease The Ciciarelli and Schmidt Family

By Francie Kelley, Executive Director, Celiac Kids Connection, Boston Children’s Hospital

I had the opportunity to spend time with on of our CKC board members, Janet Ciciarelli, to talk about her family’s journey with celiac disease.

In late 2019, Janet’s two daughters, Eve and Maya, were diagnosed with celiac disease. Several months later, as a result of first-degree relative testing, her husband, Lars, also tested positive for the condition.

For this family Celiac Awareness Month is an opportunity for the spotlight to shine on celiac disease. They believe that with more knowledge and understanding about celiac disease and the gluten-free diet out in the general public, the easier it is to live with this condition.

The family eats a pretty typical diet. The kids love and eat lots of fruit. They try to plan meals that are naturally gluten-free. And that works well most of the time. But like all kids, the girls love cookies, pasta and pizza. Fortunately, there are lots of great gluten-free options available for them.

They find the hardest part of living with celiac disease is when there are unplanned treats at the kids’ events. Eve and Maya are lucky to have very supportive grandparents (their grandfather also has celiac!). And after several games where “surprise” donuts made an appearance, the grandparents started to bring Katz Heavenly Crème Cakes to each game. That way, when a “surprise” treat appears the grandparents are able to give the girls a delicious treat of their own.

Janet’s wish for celiac awareness month is for people to understand that the gluten-free diet is not a choice. It is not a fad diet. It is a treatment for a medical condition. She hopes that more awareness will result in more acceptance.

The entire family acknowledges that adapting to the gluten-free diet was hard at first. But after 3 years living with celiac disease, it’s normal and they do not think about it every day. The benefit is that everyone is healthy, happy, and thriving.

GF Summer Camp page updated

Our gluten-free (GF) summer camp list has been updated

There are many great camps that are not specifically GF but can accommodate the gluten-free diet. Our list is camps that are 100% GF or use a special GF kitchen or take other special precautions to ensure a gluten-free camp experience.

Go to the Gluten-Free Summer Camp page

Celiac Kids Connection Cookbook

We are creating a cookbook. Here is detailed information about the cookbook and how to submit a recipe.

The deadline to submit recipes is November 10, 2022.

General Information

Celiac Kids Connection is creating a collection of member’s favorite recipes. The cookbook is supported philanthropically by Schär USA.

The date for submitting recipes is November 10, 2022.

Recipes should be original recipes. If you have modified a recipe from another source, you will need to include that source when you submit the recipe. This will allow us to attribute the original source in the cookbook.

All recipes submitted to the contest will be included in the cookbook and a winner in each recipe category will receive a prize basket (limit one prize per household).

While Schär USA is supporting this project, you are welcome to submit any GF recipe. They are not required to contain Schär products as ingredients.

Contest Details

◊ All recipes must be gluten free

◊ Have lots of fun creating recipes. Take photos along the way to submit with your recipes. Photos can have just the food or your family featured in them as well. We love seeing smiling faces cooking!

◊ You may submit as many recipes as you would like in each category. Our recipe categories are:

  • Breakfast – This can be school days, weekends in your PJs, slumber parties, etc.
  • Snacks – We want ideas for snacks you eat at home and on-the-go. Think about afterschool, sporting activities, and travel
  • Fill the Lunch Box – Yes, include your favorite sandwich combos. But think about other items like snack mixes, fruit salads, and hummus or other dips.
  • Fast Family Meals for Busy Nights
  • Fun with Family and Friends – This includes all types of parties and entertaining. We want recipes for birthday parties, holiday gatherings, hang outs with friends, etc
  • Desserts
  • Spectacular S’mores

    ◊ Submit your recipes using our Recipe Submission Page.  Here are some tips about submitting a recipe.

    • You will need to complete all of the items in the submission form. This includes information you are used to seeing in cookbooks but maybe do not typically include when you share recipes with friends such as:
      • How many servings does the recipe make?
      • What is the estimated time to prepare and cook this recipe?
    • Each recipe needs a name or title. It can be as simple as “The Jones Family Favorite Brownies” or it can be elaborate. You choose!
    • The ingredient list should be detailed and include measurements.
    • The recipe steps should be easy to follow by someone who has not made this before.

    HAVE FUN CREATING RECIPES!!

    Gluten-Free Candy List Updated for Halloween

    Our gluten-free candy list, has been updated just in time for Halloween. Please go to our Gluten-Free Candy Guide page to find the list and information on how it was prepared. Again, this year we have included carb count information from JDRF for families living with the dual diagnosis of celiac disease and type 1 diabetes.

    We hope you find this list helpful and HAPPY HALLOWEEN!

    Go to the Gluten-Free Candy Guide

    Ask Dr. Weir and Dr. Chang – July 2022

    This month’s “Ask the Expert” features Dascha Weir, MD, Associate Director, The Celiac Disease Program, Boston Children’s Hospital and Denis Chang, MD, MS, Attending Physician. Dr. Weir explains what happens in your body with celiac disease. Dr. Chang explains why follow-up care is so important after a celiac disease diagnosis.

    Question – What happens in your body with celiac disease?

    Dr. Weir – Eating gluten stimulates the immune system and causes damage to the small intestine. Inflammation and malnutrition can lead to sever limitation of bodily function. Left untreated, celiac disease can lead to long term complications. These include nutritional deficiencies, osteopenia, cancers and infertility

    For more information about the biology of celiac disease see the “Biology Basics” section of this website.

    Question – Why is follow-up care important for someone with celiac disease?

    Dr. Chang – After a celiac disease diagnosis it’s important to maintain a connection with a gastroenterologist who specializes in celiac disease. Here are 5 reasons why I do annual follow-up visits with my patients.

    1. Review dietary adherence
    2. Monitor symptoms
    3. Assess new symptoms
    4. Track growth
    5. Check thyroid function

    For more detailed information about follow-up care, see this article which you can also find on this website.