Join teen board member Caroline Johnson as she shares ice cream based recipes. You can watch the demo or cook at home along with Caroline.
This event is open to all ages
Contact CeliacKidsConnection@childrens.harvard.edu to RSVP, get the Zoom link and the ingredient list.
A meeting for those who are new to celiac disease (CD) and the gluten-free (GF) diet. After a brief presentation, the floor will be open to your questions. This event is open to parents and children. We also welcome families that are experienced with CD and the GF diet to share your experiences.
Contact CeliacKidsConnection@childrens.harvard.edu to RSVP and get the Zoom link.
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!
Chat about life with celiac disease and the gluten-free diet. You can share frustrations and the creative solutions you have developed for living gluten-free in a gluten-filled world.
Contact CeliacKidsConnection@childrens.harvard.edu to RSVP and get the Zoom link.
By Tara McCarthy, MS RD LDN, The Celiac Disease Program, Boston Children’s Hospital
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:
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.
Happy Handwashing! Stay healthy, safe and Gluten Free!
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By Kelleigh Roffman
Greetings! Our family has been on our gluten-free (GF) journey beginning in 2012 when our then eleven year old twin daughters, Sarah and Kaitlyn, were diagnosed with celiac disease. It has been our mission to make sure that they traveled the smoothest road possible while navigating the challenges of this disease. Even though the road can be bumpy at times, with a little research, planning and flexibility we have found that most anything is possible.
This is particularly true with two of our favorite things to do as a family: eat and travel!! The original purpose of this blog had been twofold: 1. Sharing places we have traveled and our tips for eating safely in places we visited and 2. Sharing our favorite gluten-free recipes and other resources that we have found helpful along the way.
In light of all that has happened over the last couple months with the outbreak of Coronavirus, it seems more appropriate at this time to focus on recipes and resources. I am not sure about all of you, but we have been spending a lot of time in the kitchen!
For this installment of the blog, I thought that I would focus on baking with gluten-free flours. I have listed below some of our favorites. We have had great success with these by substituting them cup for cup in any recipe. While it may seem a little extra, I have found that weighing out the flour on a digital scale using 140g for 1 cup to yield the best results.
Better Batter All Purpose Flour (available online from betterbatter.org and sometimes Amazon)
While Better Batter is considerably more expensive than the GF flour available in the grocery store, we have had luck with regular baked goods as well as making bread with it. In particular, we have enjoyed the baguette recipe that accompanies the meatball sub recipe on Better Batter’s website. It is very easy to make and the results are delicious. https://betterbatter.org/meatball-subs
Authentic Foods Multi Blend Flour (available from online retailers such as Vitacost and Amazon)
Even though this blend recommends using ¾ of a cup for every 1 cup of regular flour that a recipe calls for, we have used it with a straight up 1:1 substitution (weighing out 140g of flour on a digital scale).
Bob’s Red Mill 1 to 1 Baking Flour (available in most grocery stores)
This flour is much more affordable than the other two listed above. While we prefer to use Better Batter and Authentic Foods Multi Blend Flour, this is a much more economical option and produces great results.
We would also love to hear what flours other people are enjoying. Please feel free to share in the comment section below.
We are happy to be in touch with families who are traveling along the same gluten free road and share our journey(s) with you! Stay tuned!
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The Celiac Kids Connection board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room A in the Flashner Conference Center.
Follow along as teen board member Caroline Johnson demos a few of her favorite recipes. You can watch the demo or cook at home along with Caroline.
Contact CeliacKidsConnection@childrens.harvard.edu to RSVP, get the Zoom link and the ingredient list.
CANCELLED - Originally we had scheduled this event for May 31st. We were not able to host the event on that date due to pandemic closures. We had hoped to reschedule this event to later in the summer. But as of mid-July we have determined that even with restrictions lifted on some outdoor gatherings, it does not appear prudent to host this event.
This was planned as an afternoon of family fun. We will start with mini golf and then proceed next door to Richardson's Farm. At Richardson's we will enjoy ice cream and spend time on the dairy farm.
