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Tips for Eating Safe GF School Provided Meals

Eating Gluten-Free in South Korea

Gluten-Free Candy List Updated for Halloween

Ask Tara McCarthy, MS, RD, LDN – June 2021

This month’s “Ask the Expert” features Tara McCarthy, MS, RD, LDN, Clinical Nutrition Specialist, Boston Children’s Hospital. Tara answers questions about multi vitamins and strawberries.

Question – My pediatrician thinks my daughter should be taking a multivitamin plus iron. Do you have a recommendation for a gluten-free children’s multivitamin?

Tara McCarthy – This is a very common question for dietitians. Celiac Disease can cause damage to intestinal villi which is where many vitamins and minerals are absorbed. Some patients are diagnosed with celiac disease after the diagnosis of iron deficiency anemia. We recommend a multivitamin for patients newly diagnosed with celiac disease. In the United States, wheat products are fortified with B vitamins, therefore when you avoid gluten you may be missing out on these extra vitamins. Of note, many gummy multivitamins do not have adequate B vitamins so be sure to check the label. The recommendation would be a chewable vitamin or one the child can swallow as these are usually more complete. We all know that children do not always eat the perfect diet especially in the early phases of celiac disease because the child may have symptoms that influences what they eat. As a rule of thumb, if a child eats 5 different fruits and vegetables daily, has a good variety of grains and whole natural foods which contain iron then, then they may not need a multivitamin. If your child struggles in any of these areas, consider the multivitamin as a safety net. The most important information is for any multivitamin or supplement to say GLUTEN-FREE on the label.

For these reasons, lack of diet variety, damaged villi and vitamins missing in the gluten-free diet, many children with celiac disease may benefit from a chewable multivitamin with iron. It is always important to meet with a registered dietitian who specializes in celiac to look at your child’s specific intake. My recommendation is always a chewable multivitamin that says gluten-free on the label and has close to 100% of all the vitamins and minerals. My current go to recommendation is Target brand Up and Up multivitamin.

(Note: Flintstones has changed its formulation and is no longer gluten-free).

Question – Strawberries are in season and my kids have always loved strawberry picking. Since my son’s diagnosis of celiac disease, I am concerned about strawberries and strawberry picking. I have read that strawberries are grown on straw and most often wheat straw. Is this true? And if yes, is this a problem for gluten cross-contact in eating strawberries?

Also, is it a concern being in the strawberry field picking the strawberries and coming into contact with the wheat straw?

Tara McCarthy – Just last week I noticed my strawberries were labelled gluten-free and thought this was hysterical, because of course strawberries are gluten-free. So, I looked more into this and the name is “strawberries” because these are berries that were originally grown on straw. Straw and hay are often used interchangeably. Straw is the stalk of the plant left over after the grain has been harvested, the gluten is in the grain. Hay is harvested before the seed (which contains gluten) is made. Today, not all strawberries are grown on straw. Plus, the wheat is in the grain kernel and not the straw part of the plant. Our recommendation would be to not worry about gluten contamination in fresh strawberries. Always wash your berries before you eat them and always wash your hands before you eat anything. Strawberry picking is a great activity that we would encourage in the celiac community.

Ask Dr. Du – December 2023

Ask Dr. Chang – September 2023

Ask Sharon Weston – August 2023

Ask Dr. Weir and Dr. Chang – July 2022

Are you eating gluten free and still experiencing symptoms?

If your child continues to experience symptoms after 6 to 12 months on the gluten-free diet and is between the ages of 12 and 18 we have and exciting research opportunity to talk to you about.

The Celiac Disease Patient-Reported Outcome (CeD PRO) Measures study is a one-time, telephone interview and will last approximately 60-90 minutes of your time.

To learn more about the study and what it means to participate, please review this outline.

2024 Gluten-Free Candy List

Tips for Eating Safe GF School Provided Meals

Eating Gluten-Free in South Korea

Gluten-Free Candy List Updated for Halloween

Talking about Celiac Disease

By Abby Baird, Teen Board Member

I’m Abby B, a junior who has had Celiac for almost three years now. I play multiple sports and go to a small private Christian school, meeting in person, despite Covid-19. I got diagnosed with Celiac Disease when I was in 8th grade and have had it for three years now. Since I go to such a small school I am the only one in the high school that has Celiac Disease and the only one who must eat strictly gluten-free, which is hard because many people and teachers don’t know or remember that I am gluten-free. With life starting to return closer and closer to normal, I would like to talk about some of the struggles of hanging out with friends while having Celiac Disease.

When I first got diagnosed with Celiac Disease I was confused and scared about what this would mean for me and how it would change my life. I found that it was hard for me to think about telling my friends what was going on, that they would end up seeing me for what my problems are and not for who I am. Eventually once I was officially diagnosed I told all my friends and they were so supportive and immediately asked what they could do to help me. Three years later I still have those exact same friends and it has definitely gotten easier, but that does not mean that living and eating out with friends is easy.

The first piece of advice that I would give anyone who has to face trying to tell all their friends about having Celiac Disease, is just to be honest. Don’t try to downplay what your disease is or how it affects you but instead tell them exactly how you feel and what it does to you. This ensures that you have not only told your friends what is wrong, but you have also communicated how serious this autoimmune disease is. It is not an easy thing to have to tell all your friends, but they should understand and they should want to help you through this.

Secondly once you have told your friends that you have Celiac Disease, communicating with your friends about your needs is crucial. Instead of trying to fit in, you need to speak up for yourself and tell your friends about your needs and what you can and can’t do when it comes to food. It is definitely something that is abnormal for a teenager to have to do and it is not an easy thing, but in the end making sure that you are eating safe is so much better for you than trying to fit in.

Lastly I just want to stress how important confidence is in all of this. Being a teenager is already stressful enough and to have something else added into the mix can make it so much worse. I have found over the three years that I have had Celiac Disease that being confident in what I can and cannot eat, or what Celiac Disease is, has been so helpful. There are always going to be people who think they know what you are going through, or try to tell you that you are wrong, confidence is key in those situations. Being sure of what you know to be true can be so helpful for not only you but for your friends as well.

Life with Celiac Disease definitely has its ups and downs, but if you are able to have your friends try to help you, it can be made so much easier.

2024 Gluten-Free Candy List

Tips for Eating Safe GF School Provided Meals

Eating Gluten-Free in South Korea

Gluten-Free Candy List Updated for Halloween

Ask Dr. Weir – May 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 testing siblings for celiac disease and other health monitoring issues.

Question – My 6 year-old was diagnosed with celiac disease 2 years ago. He does great on the gluten-free diet and his health and growth have improved so much. My 1 year-old is showing some of the same symptoms we saw with my older child before his diagnosis. Should I have my 1 year-old tested for celiac disease?

Dr. Weir – Siblings of children with celiac disease are at higher risk of developing celiac disease. Because of this risk, all siblings of children with celiac disease should be screened with blood work (a total IgA and tissue transglutaminase IgA) at the time of their brother/sister’s diagnosis. Repeat testing every 3 years through childhood and adolescence is then advised. Typically, we don’t recommend sending the blood work until after the age of 2 years. However, when a sibling is showing concerning signs or symptoms sooner than 3 years from the last screening tests or before 2 years of age, we recommend screening for celiac disease at that time. Remember, if a child isn’t consuming gluten regularly, these tests may not show up with positive results even in the setting of celiac disease.

Question – Are there other health issues closely related to celiac disease that I should be asking my pediatrician to monitor for in my child?

Dr. Weir – Pediatricians and gastroenterologists work as a team to promote health and monitor for problems in the children in their care. There are some specific health issues that we see more frequently in children with celiac disease though, fortunately, most kids won’t develop them. Children with celiac disease are at risk of developing other autoimmune diseases, such as thyroid conditions and type 1 diabetes. Research has also suggested that children with celiac disease have increased risk of psychiatric issues such as depression, anxiety, eating disorders and behavioral disorders. It is important to pay close attention to both the physical and mental health of all children, but especially kids who have celiac disease.

Ask Dr. Du – December 2023

Ask Dr. Chang – September 2023

Ask Sharon Weston – August 2023

Ask Dr. Weir and Dr. Chang – July 2022

Ask Dr. Weir – April 2021

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 going back to school and persistent celiac disease related symptoms.

Question – With kids getting ready to go back to school in person, I expect more incidences of colds, stomach bugs and those other ailments that kids pass around at school. Is my child more susceptible to these illness because of his celiac disease?

Dr. Weir – No. Celiac disease does not compromise a child’s immune system. Kids with celiac disease are not more susceptible to the common viral or bacterial infections of childhood (or to COVID-19 fortunately) than kids without celiac disease.

Hopefully, with all the expected protective measures in place (such as social distancing, frequent hand washing and mask wearing) we will be seeing fewer infectious illnesses this year – even as the kids get back to school.

Question – My child was diagnosed with celiac disease 2 years ago. At first we saw a lot of improvement in her health but then she plateaued and continues to have issues. We are confident that her diet is gluten-free. Why has she stopped getting better?

Dr. Weir – Most children with celiac disease feel better on a gluten diet. However, unfortunately, approximately 15% of kids with celiac disease continue to have symptoms after diagnosis for a variety of reasons. The most common symptoms that continue to bother children on a gluten free diet are abdominal pain, hard stools, nausea, diarrhea, poor weight gain or growth or fatigue.

I recommend discussing your child’s ongoing issues with your gastroenterologist so that she/he can help sort it out. Consultation with a dietitian who specializes in celiac disease is important because unrecognized gluten exposure is a frequent cause of ongoing or recurrent symptoms. Constipation, a common side effect of the gluten free diet because it tends to be lower in fiber than the standard diet, is another leading cause of ongoing symptoms. Some children with celiac disease may have concurrent lactose intolerance and oat sensitivity. Other causes include gastro-esophageal reflux and irritable bowel syndrome. Another frequently seen cause of abdominal pain in children is functional abdominal pain, a condition related to heightened sensitivity to the normal functioning of the gastrointestinal tract that causes pain in the absence of inflammation, infection or anatomic abnormalities.

The specific intervention or treatment that will help your child, depends on what is triggering the symptom.

Ask Dr. Du – December 2023

Ask Dr. Chang – September 2023

Ask Sharon Weston – August 2023

Ask Dr. Weir and Dr. Chang – July 2022

Volunteer Appreciation Week

During Volunteer Appreciation Week, we would like take a moment to thank our volunteers. You are the people who make Celiac Kids Connection great. We would not be who we are without your hard work and dedication. THANK YOU!!!

Celiac Kids Connections relies on our volunteers. There is nothing we do that does not require volunteer effort. In addition, we could not have navigated our way through the year that was 2020 without your support.

Thank you to our

Board Members – who oversee the group’s activities and with their families work hard at all of our events.
Committee Members – who serve on our committees dedicated to special projects. These committees are Awareness, Communications, Education, Food Insecurity, New Families, Membership, Event Planning and School Advocacy.
Welcome Families – who connect with families new to celiac disease and the gluten-free diet
Bloggers – who make sure this website has the most up-to-date information
Mentors – who spend time (even while in quarantine) with their mentees
Newsletter writers and editors – who make our newsletter fantastic
Event Staff – who make our events run smoothly. Every event requires people to come early to set-up, stay late to clean-up and assist during the event.
Vendor Outreach Coordinator – who works with vendors ensuring we have samples for events and welcome baskets
Welcome Basket Family – who prepares and ships the welcome baskets
Teens who complete Green Ribbon Projects – These are projects that benefit our CKC community.
Boston Children’s Hospital Staff – who are generous with their time supporting our activities.

To all of our volunteers, we are grateful for your contributions to Celiac Kids Connection.

Thank you everyone!!

2024 Gluten-Free Candy List

Tips for Eating Safe GF School Provided Meals

Eating Gluten-Free in South Korea

Gluten-Free Candy List Updated for Halloween

Ask Dr. Weir – February 2021

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 how children react to an accidental gluten exposure and when children can be vaccinated for COVID-19.

Question – Recently my daughter was accidently exposed to gluten. When she was first diagnosed with celiac disease her response to gluten was vomiting. After this recent exposure her response was a headache and fatigue. Is it normal for your reaction to gluten to change?

Dr. Weir – In people with celiac disease, there is a wide range of symptoms triggered by ingestion to gluten. Some people with celiac disease have severe to mild gastrointestinal symptoms when they are exposed to gluten, such as abdominal pain, nausea, vomiting or changes in their stool pattern (diarrhea or constipation). Others may have non-gastrointestinal symptoms, such as irritability, fatigue, headaches or joint pains. Some will have no recognizable symptoms when they ingest gluten.

Interestingly, an individual with celiac disease can also have a range of symptoms with gluten ingestions. Some of this variation is dependent on the amount of gluten consumed. For example, a child may develop abdominal pain after eating food that contains small amounts of gluten secondary to cross contact. But, that same child, may experience vomiting if they were to ingest a larger load of gluten in the form of a bowl of gluten containing pasta.

Many people with celiac disease seem to have a reproducible and recognizable reaction to gluten ingestion over time. However, we have observed that some children, as they get older, will have a shift in their symptom pattern with gluten exposures.

Question – When can we expect children to be eligible for the COVID-19 vaccine and will it be considered safe for kids with celiac disease?

Dr. Weir – Currently, the FDA has authorized use of two COVID-19 vaccines. One is currently approved for children 16 years of age and older. The other authorized vaccination is for people aged 18 years and older. Unfortunately, at this time, no COVID-19 vaccines have been approved for children under the age of 16 years.

The Society for the Study of Celiac Disease (SSCD) has released a statement on the safety of COVID-19 vaccination and specifically urges adults with celiac disease to get vaccination when it is offered to them. “As the safety and efficacy data on Covid vaccination has emerged, there is no evidence to suggest that people with celiac disease would be more prone to an adverse effect of vaccination. Celiac disease is not considered an allergy, and by itself does not prompt additional precaution when proceeding with vaccination”. You can read the entire statement here: https://www.theceliacsociety.org/sscd_news.

We encourage people with celiac disease over the age of 16 years of age to get COVID-19 vaccination when it becomes available to them. Vaccine eligibility varies state by state. Currently, in Massachusetts, teenagers who are 16 years of age and older who have 2 or more specific medical conditions (including cancer, chronic kidney disease, down syndrome, specific heart conditions, immunocompromised state from solid organ transplant, severe obesity, pregnancy, sickle cell disease, type 2 diabetes mellitus and moderate-to-severe asthma) are eligible for vaccination. Celiac disease is NOT a medical condition that qualifies at this time. It is not clear when vaccination eligibility will open up to all people older than 16 years.

While little is currently known about the safety and efficacy of COVID-19 vaccination in children, data is anticipated in the coming months. Clinical trials are currently underway in children 12 years and older and additional trials in children under the age of 12 will be initiated after results from the adolescent trials are in. Experts are hopeful that COVID-19 vaccination will be available to teenagers over the age of 12 in the fall of 2021. The timeline for vaccine authorization for children under the age of 12 is less clear but estimated to occur in early 2022.

If you would like to learn more about COVID-19 vaccines, please join the National Celiac Association (NCA) and the Harvard Medical School Celiac Research Program for “Get the Facts on COVID-19 Vaccines and Celiac Disease.” The second webinar in our “All Things Celiac” 2021 series will be held Thursday, March 25, 2021 at 1:00 pm EST. Speakers will present on selected topics for 60 minutes, followed by 15 minutes for Q&A.

Addressing the COVID-19 pandemic requires understanding variations in the human immune system, how different groups are affected by the virus, and how we can leverage science to develop targeted vaccines to protect us. Dr. Ofer Levy, director of the Precisions Vaccine Program in the Division of Infectious Diseases at Boston Children’s Hospital and Dr. Lael Yonker, pediatric pulmonologist and co-founder of the Pediatric COVID-19 Biorepository at Massachusetts General Hospital, will lead the discussion to help attendees understand what is known about the COVID-19 virus today and how new developments will help to contain community spread of the virus.

Register Here

Ask Dr. Du – December 2023

Ask Dr. Chang – September 2023

Ask Sharon Weston – August 2023

Ask Dr. Weir and Dr. Chang – July 2022