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Is there Gluten in my Hand Sanitizer?

By Francie Kelley, Executive Director, Celiac Kids Connection

The short answer is - maybe. It is rare to find gluten in hand sanitizer, but it is possible.

Due to COVID-19 we are all washing our hands and we are washing them A LOT. When we cannot wash our hands, we are using hand sanitizer. The CDC and FDA both recommend that you should wash your hands and rely on hand sanitizer only when you are unable to use soap and water.

With this in mind we are using hand sanitizer a lot more than we have in the past. In particular, as our kids get ready to go back to school there will not be hand washing stations in each classroom. Schools will be relying on hand sanitizer for students.

The active ingredient in hand sanitizer is alcohol and the CDC recommends that your hand sanitizer contain at least 60% alcohol. Glycerol or other compounds are often added to help reduce the drying of your skin. In addition, fragrances may be added.

Most hand sanitizers are gluten free (GF). But some manufacturers do add moisturizers or fragrances that contain gluten. If you are using a gluten containing hand sanitizer and then eating, you may be exposing yourself to gluten. Therefore, it is always important to check the ingredients of you hand sanitizer.

Based on the information on their website, Purell is gluten-free. We have had reports that some of the Bed Bath and Beyond brand hand sanitizers contain gluten. They are currently out of stock and I was unable to check ingredients to verify those reports. Some Bath and Body Works hand sanitizers contain wheat amino acids.

Again, most hand sanitizers are GF. However, it is important to know that they can contain gluten and it is important to check the ingredients of hand sanitizer before you use it.

As kids prepare to go back to school, it is important to keep in mind that your school will be using a lot of hand sanitizer. Find out what brand of sanitizer your school is using and check the ingredients. If you are concerned about the GF status of the hand sanitizer in your school, send your kids to school with a hand sanitizer brand that you know is GF. Your child can keep that with them and use their own personal hand sanitizer instead of the school provided hand sanitizer.

Yes, wash your hands and use hand sanitizer when soap and water is not available. But make sure you know that your hand sanitizer is GF.

How should I prepare for my child to go back to school in the fall?

By The Boston Children’s Hospital Celiac Team

There are actually brand new recommendations to help families managing celiac disease safely attend school, day care, after school programs, and other learning environment activities. In 2019, Dr. Jocelyn Silvester and Janis Arnold from our Boston Children’s Hospital Celiac Disease Program team joined a national coalition of educators, health care professionals, food service providers, advocacy groups, and parents/guardians to develop standardized recommendations and training resources to ensure the safety of a child with celiac disease in any learning environment. The recommendations are now complete and available for families nationwide to use.

The 2020 Voluntary Recommendations for Managing Celiac Disease in Learning Environments advocate developing a Celiac Disease Management Plan for children with celiac disease. A successful plan depends on a strong partnership among families, medical practitioners, and staff in learning environments to help children overcome challenges associated with having celiac disease. All of the necessary tools are found in the recommendations, including a table of reasonable accommodations, action lists for parents, students, and educators, sample 504 plans, letters to share with teachers and Parent Teacher Organizations (PTOs), gluten-free school supply lists, and much more.

You can download a copy of the new recommendations.

Are there any special considerations for COVID-19 and going back to school for students with celiac disease?

The beginning of the school year is always a good time to connect or reconnect with nurses and teachers regarding the need to think about and communicate about activities that may require considerations to be safe for students who require gluten-free diets. Whether you are starting at a new school or returning to familiar faces and old friends, don’t be bashful about partnerships and advocacy to help make this a successful school year.

Like many things in 2020, the coming school year is likely to be very different from those that have come before it. Feeding students is just one area that is being revised in many schools to accommodate new guidelines to reduce the spread of infections. This may mean a new caterer or a switch from cafeteria-style to “grab and go” meals to avoid crowding and line-ups. There may also be changes in where students eat, so even if you bring your lunch to school, it is worth checking in to make sure that there remains a plan for a clean surface on which to eat the lunch.

Are there any special considerations for COVID-19 and celiac disease?

There are many questions about whether people with autoimmune conditions have a higher risk for severe complications of coronavirus infection, especially for those who use medications that suppress or alter the body’s immune response. This is much less of a concern for celiac disease, as it is treated with a gluten-free diet, which is not known to affect normal immune function. Celiac disease is not considered to be an immunocompromised state in children, and in itself is not known to be a risk factor for severe effects of COVID-19.

Like their classmates, students with celiac disease (and their families) should follow all current public health recommendations and exercise careful infection control practices. This may include physical distancing, wearing a face mask, washing hands with soap and water frequently and for at least 20 seconds, and avoiding touching their eyes, nose and mouth. Patients with other medical conditions should contact their healthcare provider for further disease-specific guidance and should refer to information provided by local health authorities.

The Boston Children’s Hospital Celiac Team:

Janis Arnold, LICSW
Sophie Burge MS, RDN, LD
Denis Chang, MD, MS
Alan Leichtner, MD
Tara McCarthy MS, RDN
Randi Pleskow, MD
Jocelyn Silvester, MD PhD
Dascha C. Weir, MD
Sharon Weston, MS RD, LDN

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GluTeen Free: A Letter to my Younger Self

I’m Abby B, a rising junior who has had Celiac for two and a half years. I play multiple sports and go to a small private Christian school, now located at my house because of Covid-19. I got diagnosed with celiac disease when I was in 8th grade and have had it for almost two 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.

Celiac disease is something that with time becomes easy to manage and to live with but those first few months where you are plunged into having to change everything in your entire life, it can feel horrible. When I was first diagnosed with celiac disease in 2018 honestly my main question was just what it meant to be gluten-free. When I went to my doctors because I wasn’t feeling well my mom threw out that I might have celiac disease as an option but almost as a joke (we thought I had mono or maybe Lyme disease) as we were walking in. When I asked her what celiac disease was, I immediately laughed when she said that it meant going gluten-free because before celiac disease I ate at least a box of pasta a week, if not more. I had a bag of goldfish every night as a snack and to fuel up for basketball games I’d eat a sourdough bread bowl.

I loved gluten and I had no idea that there was even a disease that could take that away from me. Two years later as I am writing this thinking back to how I was 100% sure that I could not have celiac disease, I can’t believe how wrong I was and how looking back the clues were actually pointing to that diagnosis.

Perhaps you just were diagnosed with celiac disease, and you should know that the first month or two feels crazy. You attend a nutrition class where they tell you all the things that you aren’t allowed to eat anymore (even things that weren’t obvious to me like Rice Krispies since they use malt flavoring) and how you have to change your diet. After that you have to brave the grocery store, walking up and down every aisle checking the ingredients on every item and it can feel overwhelming, sad, and frustrating. Then you have to go through the process of telling everyone what celiac disease is and what it means for you. Its a whirlwind few months!! But I hope I can encourage you that eventually, it does get easier, things settle down and you get used to being gluten-free and helping those around you understand what it means.

Looking back on when I was first diagnosed, I wish there were somethings that I had done differently or had better resources. One of the big things that was hard was telling my friends. It’s crazy to think that having been diagnosed for maybe a day or week you are expected to explain to your friends what has happened to you and what it means, while at the same time still trying to answer those questions yourself. I wish I had an easier way to explain it to them, or had taken time to talk to them sooner in the process. Just recently I had to go in for some further testing including a second upper and a new lower scope – none of that is easy teenage chit chat. If I had been more open upfront, it might have been easier to explain when I hit a rough patch in my health.

Another thing that I wish had been told is that despite what it feels like when you first are sitting in the nutrition class learning about the hidden dangers in some foods, there are a ton of great gluten-free substitutes for what you used to eat. You will just have to get a little creative and learn to talk directly to the store and restaurant managers.

Lastly, I wish future me could have just told my eighth-grade self that despite what it feels like, it does get better and at a faster pace than you would expect.

Everyone is different and every person’s journey through being diagnosed to your new normal life is different. Maybe you knew what celiac disease was before you were diagnosed, or maybe you were finding out as you were diagnosed. But it gets better and it gets more manageable. Just maybe don’t laugh and think it’s impossible when you are told that you might have celiac disease!

Temporary Policy for Food Labeling Requirements during COVID 19 pandemic. What does this mean to the celiac community?

By Tara McCarthy, MS RD LDN, The Celiac Disease Program, Boston Children’s Hospital

Link to Temporary Policy

What has changed: In May 2020, the US Food and Drug Administration (FDA) came out with a temporary policy guidance to be used for ingredient substitutions due to disruptions in supply or food shortages during the pandemic. Specifically, manufacturers will be temporarily allowed to make minor ingredient substitutions without full disclosure or making changes to the ingredient label. The aim is to provide flexibility for manufacturers so that the food supply is stable. The full document has many good examples of substitutions. It is important to gather all the facts first and see how this could be worrisome for those patients with celiac disease before we start to stress.

The role of the FDA is to ensure safety of the food supply and they have clearly indicated that allergens, including gluten, are safety concerns. This is reiterated throughout the document and the FDA is telling manufacturers that they should not make substitutions that would cause an “adverse health effect”. In the policy, the FDA outlines general factors for manufacturers to consider, including:

“SAFETY: the ingredient being substituted for the labeled ingredient does not cause any adverse health effect (including food allergens, gluten, sulfites, or other ingredients known to cause sensitivities (see section C.2.a) in some people, for example, glutamates);
QUANTITY: generally present at 2 percent or less by weight of the finished food;
PROMINENCE: the ingredient being omitted or substituted for the labeled ingredient is not a major (prominent) ingredient (for example, replacing rice flour for wheat flour in a muffin) or an ingredient that is the subject of a label statement (such as, butter in a cookie with a “Made with real butter” claim)
CLAIMS: an omission or substitution of the ingredient does not affect any voluntary nutrient content or health claims on the label”

This is the only mention of gluten in the document, as later the recommendations refer to substitutions that would cause “an adverse health effect”. The section on claims means that gluten should not be added to products with a gluten-free claim.

The FDA is concerned that consumers be notified of changes even if they can’t tell by reading the label. “For transparency and consumer awareness, we recommend that manufacturers use alternative ways, such as posting information to their website or through point of sale labeling, to communicate to consumers any changes, such as ingredient omissions or substitutions, that are not reflected on the product label”. The document uses the words should or recommend which means it is suggested or recommended but NOT required per the document.

Looking at the temporary changes made, it also discusses guidelines that have not changed. The guidance also specifically references the food labeling law Consumer protection act (FALCPA) also known as section 201(qq) of the Food Drugs and Cosmetics Act (FD&C). This law already protects the consumer for the top 8 allergens this includes wheat (very important for the celiac community), soy, dairy, eggs, fish, shellfish, peanuts and tree nuts.. In addition, per the document:

“Avoidance Considerations In addition to the eight major food allergens defined at section 201(qq) of the FD&C Act, several other foods (such as sesame, celery, lupin, buckwheat, molluscan shellfish, and mustard) are recognized as priority allergens in other parts of the world including Canada, European countries, and Japan. There are also other ingredients (such as glutamates and sulfites) that can cause adverse reactions. Manufacturers should avoid substitutions that could result in a safety concern without making a conforming label change or providing other means to inform consumers of the change.”

As far as cross contact and the voluntary labeling such as made in a facility or may contain for allergens, these claims are NOT regulated and cannot be used to determine if a product is safe or not. This has NOT changed with this new temporary policy. You can and SHOULD always contact the company.

To summarize our recommendations:

Always Read the labels and double check the products each time you buy them. Products change; with this temporary policy this may not be enough so we encourage families to call companies.
Look for products labeled Gluten Free. If a product claims it is GF then the manufacturer is claiming that it contains less than 20ppm gluten.
Contact the company with any questions and be specific.

Happy Handwashing! Stay healthy, safe and Gluten Free!