Living with a sesame allergy is not easy
We are all familiar with those tiny seeds known as sesame. From garnishes to hummus and even baked goods, sesame seeds have gained in popularity across cultures. For many, they are an enjoyable, versatile and healthy seed. However, for adults and children living with a sesame allergy, they can be potentially life-threatening and just as dangerous as a peanut allergy.
Kortney and Shahla, co-founders of Zestfull, both know what it is like to manage a sesame allergy. Kortney as an allergy adult, and Shahla as a mom of a child with a sesame allergy. This unassuming seed that seems harmless to many has led them down a winding food allergy path.
As part of our #EmpoweredPatient program with Allergy Insider, we are shedding light on what living with a sesame allergy means. In this article, we will share how Kortney and Shahla dug deeper into their diagnosis to empower themselves and their families even with the challenges of managing a sesame seed allergy. Also, we will share facts about this unusual food allergy and our top tips.
How common is a sesame allergy?
➛ Move over peanuts, sesame allergy is a growing concern worldwide
It is estimated that in the United States, over 1 million people live with a sesame allergy. Sesame has been recognized as the ninth most common food allergen as of January 1, 2023. In comparison, there are approximately 3 million people living with a tree nut/peanut allergy, which makes a sesame allergy more common than you might think.
Diagnosing a sesame allergy with allergen component testing
➛ Diagnosing a sesame allergy can be tricky
Diagnosing a food allergy is multifactorial – a blood test or skin prick test alone is not sufficient to diagnose an allergy. This is because a positive test only indicates that there is a sensitization. It does not necessarily mean you are allergic to the food.
For a proper diagnosis, your healthcare provider needs to interpret results in the context of your reaction history and may perform an oral food challenge to confirm the reaction was linked to that specific food.
Additionally, allergen component testing is now available for sesame to help understand if you fall into a high-risk category or if a positive result was due to cross-reactivity with another allergen.
➛ PRO TIP
Scared of an oral food challenge? Ask for Ses i 1 sesame allergen component testing to see if you qualify. This is a new test which is now widely available and FDA-cleared!
Sesame allergy cross-reactivity: is a sesame seed allergy the same as a nut allergy?
Sesame is often diagnosed as an allergen, with a 62% co-sensitization rate with peanuts and tree nuts 11. Brough HA, et al. Defining challenge-proven coexistent nut and sesame seed allergy: A prospective multicenter European study. J Allergy Clin Immunol. 2020 Apr;145(4):1231-1239. doi: 10.1016/j.jaci.2019.09.036. Epub 2019 Dec 20.
2. Adatia A, Clarke AE, Yanishevsky Y, Ben-Shoshan M. Sesame allergy: current perspectives. J Asthma Allergy. 2017 Apr 27;10:141-151. doi: 10.2147/JAA.S113612.
3. Saf S, Sifers TM, Baker MG, Warren CM, Knight C, Bakhl K, et al. Diagnosis of sesame allergy: Analysis of current practice and exploration of sesame component SES I 1. The Journal of Allergy and Clinical Immunology: In Practice. 2020;8(5). This means you may test positive for sesame on a skin prick or blood test if you have a tree nut or peanut allergy. As this is a co-sensitization, you may not actually be allergic. Consider allergen component testing, in this case, Ses i 1 for sesame, to check whether sesame truly is an allergen for you. This can be very helpful if your doctor is considering an oral food challenge to sesame.
You’ve eaten sesame before: can you be allergic to sesame oil but not seeds?
With regard to history and diagnosis, things can get tricky because sesame is found in a wide range of forms. You may have previously consumed sesame as whole seeds and not reacted. Sesame seeds are so small that a whole seed can pass through your digestive system intact without causing an allergic reaction to sesame seeds. Crazy, right?! Only once a sesame seed’s structure begins to be broken down by grinding can it trigger an allergic reaction.
The concentration and form of sesame that is ingested or applied topically differ greatly in how allergenic it will be. For instance, one whole raw sesame seed versus a drop of oil contains vastly different amounts of allergenic protein that may cause a reaction. In the same way, grinding a sesame seed to release its proteins will produce a higher chance of an allergic reaction to sesame.
➛ PRO TIP
If you are unsure if you or a family member has had an allergic reaction to sesame seeds, talk to your doctor about allergen component testing which is one of the easiest ways to rule out or diagnose a sesame allergy.
Figuring out if you have a sesame seed allergy
When Shahla’s daughter was first diagnosed with a sesame allergy ten years ago, their lives immediately changed. A contact reaction to hummus followed by an allergic reaction to sesame seeds months later resulted in the use of epinephrine and a hospital visit. This prompted Shahla and her husband to get their daughter tested. An allergy blood test confirmed that sesame was an allergen. Upon their doctor’s recommendation, sesame needed to be avoided in all forms. In addition to peanuts, tree nuts and other seeds, their household became a sesame-free zone.
Kortney, who as a teenager would pick sesame seeds off bagels, had her idea of life with food allergies severely altered after experiencing her most severe anaphylactic reaction from cross-contamination with sesame oil. Before this, Kortney never worried about any allergen besides peanuts and tree nuts. Her allergic reaction to sesame oil changed how she managed her multiple food allergies. Based on her allergic history and sesame allergy component testing, her medical team decided against an oral food challenge. Kortney was diagnosed with a sesame allergy.
The importance of reading labels for a sesame-free diet
Shahla could not hold back tears after getting her daughter’s diagnosis. She would no longer be able to enjoy hummus or sushi at a restaurant as a sesame seed allergy family. And their food choices were about to become even more restricted.
Because sesame was not yet part of the top 9 food allergens in the U.S. and, as such, not required to be listed as an allergen on packaged foods, so much time was spent learning about what foods contain sesame. Researching brands, reading labels, and calling companies to ensure her daughter’s food was safe became part of their family’s new normal.
Sesame could be hidden under the terms “spices or natural flavors”, which made cooking with whole foods safer and a way to recreate restaurant-style flavors that they missed.
“Many people understand the seriousness of a peanut allergy but may question a sesame allergy. It can feel isolating and overwhelming at times, especially when everything you do to keep you or your child safe is behind the scenes”Shahla
Their medical team gave Shahla and her daughter little advice about managing a sesame allergy. In search of support, she scoured the internet and connected with a privately-run Sesame Facebook Group. Here, members share their safe product finds and foods containing sesame that may not seem obvious or are hidden under other names.
Surprising foods that contain sesame
The use of sesame is typically common in Asian or Mediterranean cuisines and, of course, hamburger buns. Due to the influence of Instagram and TikTok on healthy food trends, sesame has risen in popularity and feels like it is everywhere.
Over the years, Shahla and Kortney have found many surprising foods that contain sesame, including candy corn, pizza dough, processed meats and sausages.
On a recent trip to Italy, Shahla’s family discovered sesame flour was used in several restaurants to make pizza dough. Kortney’s experiences tell us that even living in Germany, where sesame is a recognized allergen and has to be labeled on menus; it is not taken seriously enough. For example, restaurants often forget about including it on a menu when using it as a garnish. Eating out becomes especially tricky because cross-contamination risks must be considered.
➛ PRO TIP
Kortney and Shahla find having a protocol in place, such as using chef cards and calling ahead to restaurants to communicate their allergy needs, is imperative when dining out.
Sesame’s influence beyond food: sesame oil in cosmetics
Shahla and Kortney learned that they would also need to read labels on non-food items to understand what products contain sesame because food allergens may be ingredients in cosmetics and personal care products too. Sesame oil in cosmetics can be listed under other names for sesame, such as “benne, beniseed, gingelly or sesamol.”
Kortney loves to pamper herself occasionally and has found sesame oil in spa environments. From shampoos at fancy hair salons to at least half the massage parlors she has visited.
“Just like eating out, you need to do the same amount of prep work for manicures, massages and other beauty related activities. I suggest never going for a massage without your own oil or a pedi/mani without your own hand cream. You can even consider bringing your own soap for when they soak your cuticles. Better be safe than sorry than to have to miss out on the experience.”Kortney
Having a safe spa experience goes beyond the oil used. Kortney loves a good Thai massage, where the masseuse will literally walk on you. If you have a sesame allergy, this means being treated by a masseuse who may be covered in sesame oil from massaging their previous customer. Kortney found a local place that will not only provide her with 100% pure coconut oil but also ensures the masseuse will thoroughly wash their arms, hands, and even feet! They will also put on a fresh uniform before beginning Kortney’s appointment.
As you can see, there are many things to consider when managing a sesame allergy.
3 Reasons why a sesame allergy seems harder to manage than other allergens
As mentioned earlier, unlike other allergens, the allergic potency of sesame differs depending on its form and the individual’s tolerance threshold. A sesame allergy is particularly hard to manage because sesame comes in various forms, from oil to tahini (sesame ground into a paste), to the whole seed, each with its own potency level.
1. The cross-contamination potential is high for sesame
Sesame in all forms is a common kitchen ingredient and can easily cross-contaminate other foods. The concentration of sesame oil is all the more dangerous for those with an allergy, making it hard to prevent cross-contamination.
For instance, cooking oils are easily dripped over work surfaces and spread around kitchens. The ground form for sesame, as tahini or combined with chickpeas in hummus, has a particularly sticky consistency. In short, it can be a menace to clean from surfaces and kitchen utensils.
In addition, sesame seeds are so small and numerous that they have a reputation for being found where they do not belong. Kortney once found one on her couch, and they had a sesame-free house then!
2. Sesame allergen labeling in the U.S.
Thanks to the FASTER Act (Food Allergy Safety, Treatment, Education, and Research), signed into U.S. law in 2021, sesame is now recognized as a top 9 food allergen. What does this mean for the sesame-allergic community?
Food label changes
Companies that manufacture, package, or distribute food in the United States are now legally obliged to list all sources of sesame on their food labels. In other words, if a food product contains sesame or any ingredient derived from sesame, it must be listed on the label in plain language.
Some companies have already responded to this change by updating their food labels to include sesame, either by adding it to the existing list of major food allergens identified by the FDA or by creating a separate “contains sesame” statement. Products that used to be considered safe to eat may have had a change to their label. Before throwing everything out, calling the company to inquire about changes is best. After hearing them out, take the steps you feel most comfortable with.
A word of warning, however. The change came into effect so recently that several products manufactured before the start of 2023 will not have up-to-date labeling. In fact, some companies have decided to get around the gray area of ‘may contain’ lists by adding sesame to their product, making it clearly out of bounds for those allergic to sesame. Items such as bread, crackers and snacks that used to be safe to eat may no longer be so.
3. A lack of sesame allergy awareness and support
Although sesame is now the ninth most common food allergen, support and understanding of a sesame allergy is currently lacking. People may not even realize that sesame allergy symptoms can lead to a potentially fatal allergic reaction for some, similar to a peanut allergy.
Living with any serious food allergy requires you to be your own best advocate. Even so, sometimes it’s necessary to look for guidance and support from others to keep safe and feel included.
“I wish people would understand that asking for accommodations to be made, like hummus not being served at a gathering, is sometimes what we need to keep ourselves safe. It can feel like a choice -sesame or me? But we also want to not feel like a burden. There are so many ways to work together”Shahla
Kortney and Shahla’s PRO TIPS for communicating a sesame allergy:
➛ Communication is key: Contact the host ahead of time for gatherings. See if you can work together to plan a menu or ask for accommodations.
➛ Suggest an alternative: Offer to make a sesame-free dish or bring safe packaged food to share with everyone.
➛ We are in this together: Come from a place of collaboration instead of opposition. Be patient. It takes a long time to learn how to manage allergies. We need to give space for others to also adapt.
➛ Seek professional help and community if you feel isolated because of your sesame allergy.
Shifting your mindset to become an empowered patient
Life with a sesame allergy has challenges, but the good news is that it can be managed. Kortney and Shahla believe you can travel, enjoy nature and socialize. Your path may be different than the one taken by those without a sesame allergy. Yes, more time may be spent in the kitchen, but you can cook together with loved ones. You can find joy in the foods you can eat; luckily, many allergy-friendly brands are out there today! Be an empowered patient by educating others, advocating for your needs and learning more about your diagnosis through allergy testing.
Kortney and Shahla’s advice is to shift your mindset. Focus on experiences rather than how sesame or any allergen restricts your life. Seeking out friends and family who support your journey makes all the difference in the world.
Allergy resources to help you manage a sesame seed allergy:
- Investigate allergy testing options and resources: Allergy Insider
- Seek out psychological help: The Food Allergy Counselor
- Engage with the sesame allergy community to find support: Sesame Allergy Information and Awareness Group on Facebook
- Print allergy translation cards for dining out: Equal Eats
- Search for product and restaurant reviews: Spokin App
- Get excited about travel: Allergy Travels Group on Facebook
- Cook for a sesame allergy by making our sesame-free recipes
Share your #EmpoweredPatient Story
Are you newly diagnosed with a sesame allergy? Or would you like to learn more? How did a sesame allergy test result impact your life and help you become an empowered patient? Share with us on social media, email or comment below.
This guide is made in partnership with Allergy Insider, a trusted allergy resource with the most up-to-date research—all fact-checked by a team of healthcare providers. The stories within this guide are personal experiences from patients shared with permission and are not intended to be direct medical advice. To learn how to share your #EmpoweredPatient story and join the community, check out the Empowered Patient Program.
Kortney is your typical atopic triad who manages asthma, eczema and multiple food allergies. Kortney is a co-creator of the online community Allergy Travels and co-host of The Itch Podcast. She wants to spread joy in a community that can easily see the hard side of life with atopic disease and believes that you can have a full life with food allergies, it may just be lived a little differently!