Note from Alice: Traveling after a pandemic
Summer is upon us and with places easing COVID-19 restrictions, some of you may be taking your first vacation in a long while. It can be nerve-wracking on multiple levels. For those of us with celiac disease, we will once again struggle to find restaurants that serve truly gluten-free food, stuff suitcases with snacks rather than clothes, and, unfortunately, may spend a portion of our vacation in the bathroom and bed, suffering from gluten exposure.
A vacation is a time to experience new places, new cultures and new people. It’s a time to relax. It should be a break from stress and routine, but sometimes that day-to-day routine is what helps people with celiac disease feel comfortable and in control: overseeing what food is bought, how it is prepared, and how it is served. That loss of control can bring about feelings of anxiety—not exactly a fun break. In some ways, vacations highlight our differences even more. We may feel judged by restaurant staff and locals, or even those relatives we might not see too often. The idea of vacationing again reminds me that we are never truly free from celiac disease.
I recently spoke with Bravo’s Married to Medicine reality TV star Kari Wells for our Celiac Straight Talk podcast, and she shared stories of her success in dining while traveling. She reminded me that it’s important for those of us with celiac disease to not allow the diet to intimidate us into staying home. The conversation inspired me to share some of my tips for staying healthy and sane when taking a trip:
- Research the destination, culture, and food extensively beforehand. What sort of food do the locals normally eat, and does it contain gluten? Are there any dedicated gluten-free restaurants in the city you’re going to? It might be a good idea to get lodgings near those restaurants. Are there any language or cultural differences that would make asking for accommodations especially challenging? All things to consider.
- Enlist an ally, if you can. If you’re visiting someone, ask them to try out restaurants before you go, or ask them to translate for you when at a restaurant. If you’re traveling with someone, ask them to remind you to double-check that your food is gluten-free before you dig in and eat.
- When you arrive at your destination, scope out the nearest grocery store. What products do they have that you can eat in case there are no gluten-free restaurants open? At the very least fruits and vegetables are internationally gluten-free.
- Focus on the fun. It’s supposed to be a vacation, not an exercise in pain! Soak up the sun, see the nightlife, go hiking and investigate small, local stores. Eating is only half of the adventure.
- Plan for contingencies. The worst case scenario is you can’t find any gluten-free food or you get glutened. Be sure to pack a few filling gluten-free snacks (in your carry-on and checked luggage) and anything you rely on to feel better in case digestive disaster strikes.
- Don’t beat yourself up. Not every trip will go perfectly, even without an autoimmune disease. Take your mistakes in stride and use them to improve your next trip.
I do not pretend to have trip-taking down to a science. As much as I plan, things happen that are out of my control. But life is worth living, and traveling is part of what enriches the human experience. Yes, I may have the occasional negative experience, but I believe it’s better to try than to stay home for the rest of my life. I will not allow this disease to shackle me anymore than it needs to. I encourage you to do the same.
At Beyond Celiac, we envision a future free from the burden of celiac disease. With our strategic science plan and partnerships, Beyond Celiac is already making strides toward that new world: one where those with celiac disease can travel freely, be spontaneous, and eat without fear—a world Beyond Celiac.
Together for a cure,
Alice
Gluten-Free Cooking with Chef Oonagh Williams
Asian Slaw
The perfect gluten-free side for summer get-togethers! Refreshing and delicious.
No-Bake Red, White and Blue Lemon Cheesecake Mousse
A summer treat that tastes as good as it looks!
About Chef Oonagh Williams
Oonagh Williams holds a culinary arts degree and spends her time cooking and educating the public on gluten- and allergy-free diets. She herself has celiac disease and food allergies. She teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her Delicious Gluten-Free Cooking e-book and connect with her on Facebook.
July 28 Town Hall: 10 Biggest Changes in the Celiac Disease World
Join Beyond Celiac Director of Scientific Affairs, Amy Ratner as she discusses major advances in the celiac disease world with Erica Dermer of Celiac and the Beast. Learn how the world has drastically changed for those with celiac disease since Amy’s daughter was diagnosed in the 90s and Erica was diagnosed in the early aughts—and what the future might hold for those in the community.
Learn more and register
Can you trust a negative celiac disease blood test?
A new study, published in the Journal of Clinical Gastroenterology, calls the sensitivity of the TTG-IgA test for celiac disease into question and raises the issue of frequent false negatives.
Read more research news on our Research News Feed
Clinical Trials
ACeD Study
Do you, or someone you know, have celiac disease? The ACeD study is looking for volunteers with celiac disease to participate in phase 1 clinical trial testing the investigational drug KAN-101.
Requirements:
- 18-70 years old
- Biopsy-confirmed celiac disease
- On gluten-free diet for at least the last 12 months
Get More Information
CeDLara Study
Still experiencing symptoms on a gluten-free diet? The CeDLara Study is currently enrolling qualified patients into their phase 3 study to assess a potential therapy for celiac disease. This study is being conducted to determine if the drug reduces symptoms of celiac disease in patients who are on a gluten-free diet. You may qualify to participate in this study if you:
- Are 18 years old or older
- Are biopsy diagnosed with celiac disease
- Are actively experiencing symptoms related to celiac disease such as abdominal pain, abdominal cramping, bloating or gas
- Have been on a gluten-free diet for at least 6 months
Learn More
PROACTIVE Study
Are you still experiencing celiac disease symptoms despite your best efforts to follow a gluten-free diet?
The PROACTIVE Celiac Study is looking for people between the ages of 18 and 70, who have biopsy-confirmed celiac disease and have been on a gluten-free diet for at least the last 12 months. You will not be asked to ingest gluten in this study. The goal of this phase 2 clinical trial is to test the safety and effects of the investigational medication PRV-015. In combination with a gluten-free diet, PRV-015 aims to reduce symptoms and intestinal inflammation caused by accidental gluten exposure.
Learn More
See if You Qualify
Use referral code: REFBC
Solutions for Celiac Study
The Solutions for Celiac study is researching a drink-based study medication and its ability to reduce symptoms of accidental gluten exposure. Latiglutenase is a study medication designed to break down gluten into inactive pieces in the stomach to protect people with celiac disease. No uncomfortable biopsies or injections.
Locations: Chattanooga, TN | New York, NY | Chesterfield, MI | Rochester, MN
Learn More
Allergic Living Spotlight
Allergic Living’s 2021 Top Allergy-Friendly Sunscreens List
Our friends at Allergic Living have compiled a list of allergy-friendly sunscreens, made to care for skin while providing serious sun protection. They contacted manufacturers directly to confirm their top food allergen claims and processes and kept sensitive skin in mind—their choices are made without harsh chemicals. This list is particularly important for community members with dermatitis herpetiformis.
News, Events & Updates
5 Reasons the Gluten-Free Diet Isn’t Everything You Think It Is
Still wondering why those with celiac disease need treatment options beyond the gluten-free diet? Read our article to find out why the gluten-free diet may not be enough for many with celiac disease.
Celiac Straight Talk Episode 31: Kari Wells of Bravo’s Married to Medicine
Beyond Celiac CEO Alice Bast sits down with Kari Wells, producer and former cast member on the Bravo show Married to Medicine. They dive into Kari’s celiac disease journey, discuss the benefits of travel, offer advice for the newly diagnosed, and reflect on what has improved in our community over the last 20 years.
Beyond Celiac Town Hall—10 Biggest Changes in the Celiac Disease World
Join us on July 28, 2021, at 12 ET, for a conversation between Beyond Celiac Director of Scientific Affairs Amy Ratner and Erica Dermer of Celiac and the Beast on the state of the gluten-free community. Learn how the world has drastically changed for those with celiac disease since Amy’s daughter was diagnosed in the 90s and Erica was diagnosed in the early aughts—and what the future might hold for those in our community. Sign up today!
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our July-born community members! When your big day rolls around, consider raising money for Beyond Celiac so that we can help fund new research scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years!