The Blog

Ask Dr. Chang – September 2023

Ask Sharon Weston – August 2023

Ask Dr. Weir and Dr. Chang – July 2022

Ask Dr. Weir – January 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 about vaccines and teens transitioning to caring for themselves.

Question – Are there any considerations for vaccines or other well-child milestones that should be considered differently for a child with celiac disease?

Dr. Weir – Once a child with celiac disease has been diagnosed and treated with a gluten-free diet, we expect that they will be on track with their development and hit age-appropriate milestones like other children without celiac disease. Every child should see their pediatrician regularly for age-appropriate anticipatory guidance, preventative care and monitoring of growth and development.

Children with celiac disease should be on the same vaccination schedule as other children. We also encourage annual influenza vaccination. However, many children with celiac disease appear to have diminished response to the initial Hepatitis B vaccination series. For this reason, we recommend a check of Hepatitis B titers to assess for adequate antibody response and recommend revaccination as needed.

As we discussed in last months “Ask the Expert”, it is important for children to maintain a connection with a gastrointestinal specialist and to see them regularly for more celiac related care.

Question – As teens turn into adults, what should they know about monitoring their celiac disease?

Dr. Weir – As children get older, they typically begin to take charge of their gluten-free diet. The process of building skill sets to stay safely gluten-free takes time and varies between individuals. It may start by reading labels while at a friend’s house or asking questions in a restaurant instead of their parents. By the time a teenager is headed to college, they should be able to navigate the campus cafeteria and be able to plan a safe food experience for a trip away with friends.

Along the way, teenagers with celiac disease should also start taking over other aspects of their celiac disease related care. At follow-up visits with their GI specialist, they should be interacting directly with their care team by giving updates and asking questions. If they take medications or supplements, they should know what they take and why. Eventually, they should assume control over scheduling follow-up appointments. When they become adults, they will be ready to transition to an adult celiac specialist for annual visits.

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 – December 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 follow-up care for your child with celiac disease.

Question – What annual tests should a child with celiac disease have to ensure that they are managing the gluten-free diet appropriately and their body is healing or staying healthy?

Dr. Weir – Children with celiac disease should have annual monitoring labs (in addition to clinical checkups as discussed below).

Typically, every year, a tissue transglutaminase IgA should be checked to help assess if the diet is on track. Overtime, an elevated TTG IgA should normalize on a gluten free diet. If the level doesn’t come down to normal or rises after being normal, that can be a warning sign of ongoing unrecognized gluten exposure. It is important to know that a TTG IgA level is not a perfect predictor of gluten exposure or intestinal healing. A careful history by a specialist about how the diet is going and how the child is feeling is essential as well.

In New England, where vitamin D deficiency is prevalent, we recommend yearly vitamin D level assessment and supplementation if needed. Children with celiac disease should have hepatitis B titers checked as well, to assess for adequate response to the hepatitis B vaccine series, as many people with celiac disease appear to have diminished response to the initial vaccine series. Other appropriate lab studies may include periodic testing of thyroid function to assess for autoimmune thyroid disease and a complete blood count and iron studies to assess for iron deficiency and anemia.

Question – If it seems to be under control, is it sufficient to just be monitored by their primary care physician or should they continue to see a specialist?

Dr. Weir – After a diagnosis of celiac disease, it is important for children to maintain a connection with a specialist and to see them regularly. A primary care provider is a vital part of every child’s care, but a gastroenterologist adds another layer of expertise and specialized care for children with celiac disease. It is generally recommended to see them annually as a way to monitor for complications of celiac disease and the gluten-free diet. It is also an excellent way to stay up to date.

Like a primary care provider, a specialist will track for appropriate growth and transition into puberty. They will also monitor for resolution of celiac related symptoms and assess for new symptoms, like constipation (a common side effect of the GF diet). Because children with celiac disease are at higher risk of developing other autoimmune diseases, such as diabetes or hypothyroidism, they will also ask questions and look for subtle early signs of these conditions. A specialist will also send yearly monitoring blood work as discussed above.

An important part of follow up is making sure that a child with celiac disease is doing well with the gluten-free diet. Different challenges related to a gluten-free diet can arise at different developmental stages. By asking specific questions about how the diet is going, a specialist can evaluate for adherence to the diet. They can help patients and families navigate the tricky balance in being appropriately careful about avoiding gluten exposure without being too restrictive or hypervigilant. Just as importantly, they can assess if a child is coping well with the diet. They will observe for signs of stress, food related anxiety or early signs of disordered eating and help get additional supports in place as needed.

Another good reason to stay in touch with your specialist is to make sure you have access to updated information the gluten-free diet. You can also learn about new research and additional treatments as they become available in the future.

Ask Dr. Du – December 2023

Ask Dr. Chang – September 2023

Ask Sharon Weston – August 2023

Ask Dr. Weir and Dr. Chang – July 2022

GluTeen Free: Returning food as a teenager

By Abby Baird, Teen Board Member, Celiac Kids Connection

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 was diagnosed with Celiac disease when I was in 8th grade and have lived with it for almost 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. Now that some restaurants are starting to open up I would like to give some advice on eating out as a teen while being gluten-free.

As a teen, it is intimidating if not verging on scary to have to stand up for yourself at certain times, especially if it means that you are different from the rest of the group. Pre Covid-19 and even now through takeout and some open restaurants, teens are regularly going out to dinner or lunch with friends. I personally love going to get food with my friends and think that it is a great way to connect, but at the same time, it is nerve-wracking to have to change the plans so that you can order the right food that will be gluten-free. Many different times I have had to send food back at a restaurant. In addition to the fact that it is stressful to do that as a teen, it also can get tense when the restaurant will not comply with what you ask them to do. I have had good experiences with this and bad experiences, but as a teen, it is most important to make sure that you know what you are doing and that you feel comfortable doing it.

One bad experience I had was at a well-known sports stadium in Boston. I was at a school-sponsored event, so naturally, I was with all my friends. I went up to the concession stand to get two hot dogs (they had listed they had gluten-free buns on the website) and asked that the hot dogs would be prepared gluten-free because I had Celiac Disease. When I got the hot dogs back, they were all wrapped up in tinfoil and so I went back to my seat assuming everything was fine. But, when I unwrapped them I found that one of the buns did not look gluten-free, clearly one was, and one was not. When you have Celiac Disease you are able to spot the difference pretty quickly. So I was not comfortable with eating it – or really either hot dog at that point. Since this was a school-sponsored event, we had to bring a friend with us anytime we left our seats for safety reasons. When I wanted to return my hot dogs I had to make one of my friends come with me and miss the sporting event. While I knew my friends would have gladly come with me, it was awkward for me to ask that of them. Plus at that point, I did not trust the concession stand. I waited till I got home to eat. This was a bad experience, but not all times are bad, and most are good even when things get off to a shaky start.

I have eaten out at many restaurants with my friends on the Northshore and they have done a fantastic job dealing with returns of food that is not gluten-free or does not seem gluten-free. Legal C, Davio’s, and Rev Kitchen and Bar are three that are always fast and polite. When you are with your friends or without your parents, as a teen it can be stressful to have to return a meal. What I recommend doing is just politely asking if they could double-check that your food is gluten-free, and ask for a new plate if you are unsure of it. Most times restaurants are more than happy to do that for you, but if they cause a big fuss over it I would just make note of that and maybe not eat there again, or tell your parents about it.

Being a teen with Celiac Disease is not easy, but there are always ways to make it easier including making sure that all your food is good to eat at a restaurant. It may be stressful at the time, but you will thank yourself later for double-checking your food and learning how to stand up for yourself and what you need in a restaurant setting.

Join us for Celiac Smarts

April 29, 2026

Introducing our Teaching Kitchen

March 26, 2026

2024 Gluten-Free Candy List

October 1, 2024

Tips for Eating Safe GF School Provided Meals

August 26, 2024

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.

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

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.

Ask Dr. Du – December 2023

Ask Dr. Chang – September 2023

Ask Sharon Weston – August 2023

Ask Dr. Weir and Dr. Chang – July 2022