May 2023 marks Celiac Awareness Month and the 20th anniversary of Beyond Celiac! Yes, you read that right—two whole decades of tireless service to the celiac disease and gluten-free community. This milestone is not just a mere number, but a testament to our organization’s unwavering commitment towards empowering and advocating for those affected by celiac disease. As we raise a gluten-free toast to this remarkable achievement, which we couldn’t have done without the support of our amazing community, let's take a moment to reflect on our journey and revel in the magnificent milestones we have achieved so far. From pioneering patient advocacy to driving cutting-edge research, we have been at the forefront of the celiac disease movement.  As we look back on the past twenty years, we can't help but feel proud of our accomplishments as the premier patient-advocacy organization for celiac disease. Without further ado, let's take a glance at our highlight reel - a glimpse of some of the many awe-inspiring achievements that have shaped our journey!

20 Years of Service - 20 of our Notable Achievements

1. Driven by her desire to help others get diagnosed early, Alice Bast defies experts and lands a grant from the National Institutes of Health and Beyond Celiac is born!
2. Ed Snider, founder of the Philadelphia Flyers, becomes the first Beyond Celiac Board Member.
3. Beyond Celiac launches the first ever National Awareness Campaign with Heidi Collins of CNN as our spokeswoman and in partnership with Quest Diagnostics, which resulted in increasing testing for celiac disease by 40%.
4. Beyond Celiac launches the first celiac disease Continuing Medical Education Program, training 900 medical professionals and resulting in an estimated 6,000 new diagnoses.
5. Beyond Celiac leads the way in making gluten-free food available and more affordable with the launch of the first ever gluten-free expo, Appetite for Awareness. Events held in 6 cities across the country in partnerships with Walmart, Whole Foods, Wegmans and more lead to the explosion of gluten-free packaged goods available everywhere.
6. Beyond Celiac partners with Anheuser-Busch to launch the first ever mainstream gluten-free product into the marketplace, Redbridge gluten-free beer.
7. Beyond Celiac is the first patient advocacy organization to adopt a social media strategy, joining Facebook in October 2009 and reaching 100,000 supporters by 2014 then quickly expanding to YouTube, Twitter, Instagram, LinkedIn.
8. Beyond Celiac launches GREAT Kitchens and hosts the first Gluten-Free pavilion at the National Restaurant Association annual convention, resulting in driving restaurant interest in gluten-free offerings nationwide.
9. Beyond Celiac launches the first-ever family testing initiative, Seriously Celiac Disease PSA and the Talk. Tell. Test. campaign.
10. Beyond Celiac, working with the FDA, partners with the best gluten-free product certification in North America, the Gluten-Free Certification Program, so our community can have safe and accurate gluten-free food labeling.
11. Beyond Celiac spearheads a study with a grant from the FDA demonstrating that gluten in medications is a significant issue for the celiac disease community that needs to be addressed, and launches the GREAT Pharmacists training program.
12. Alice Bast and other Beyond Celiac leaders share our needs and concerns with leading policymakers and researchers nationally and internationally at the FDA GREAT3 workshop in Washington DC and the 14th International Coeliac Meeting.
13. Beyond Celiac holds the first multi-disciplinary celiac disease Research Summit, putting patients at the center of research.
14. Beyond Celiac presents our innovative patient engagement model to improve celiac disease diagnosis rates at Stanford Medicine X, an annual gathering about the future of medicine and the role technology plays in improving health.
15. Beyond Celiac creates a patient registry for people with celiac disease and their families, Go Beyond Celiac.
16. Beyond Celiac becomes the first and only advocacy organization to launch a science department and hire a CSO and convene the first annual Beyond Celiac Research Symposium.
17. Beyond Celiac awards grants for three celiac disease research projects and presents our own research on brain fog at the 2019 International Celiac Disease Symposium.
18. The COVID-19 pandemic brings the world to a halt, and Beyond Celiac pivots to provide information to the community. We release surveys through our patient registry Go Beyond Celiac to learn more about how COVID affects the celiac disease community specifically. 
19. Beyond Celiac continues with its dedication to research and awards a grant to a research team from Sheffield, UK, who previously found that gluten can cause brain changes in those with celiac disease.
20. We hosted another Research Symposium, bringing together leaders in research and clinical practice to discuss the future of celiac disease.
21. Bonus—In 2023, we have already granted five research awards, becoming the leading organization funding celiac disease research. The rest of the year is sure to bring even more progress for the research community!

Shaping the Future of our Community

As we continue our journey toward treatments and a cure, we can't help but be filled with excitement and anticipation. What new breakthroughs and advancements will we witness? Which groundbreaking celiac disease treatment currently in clinical trials will finally be approved by the FDA? The possibilities are endless, and we can't wait to witness them unfold! Before we wrap up, we would like to take a moment to express our sincerest gratitude to you, our beloved community. It is your unwavering support and resilience that has fueled our passion for advocating and empowering those affected by celiac disease and non-celiac gluten sensitivity. You are the reason why we do what we do - to ensure that no one ever feels alone or overlooked in their celiac journey. We share your vision of a world Beyond Celiac, where timely diagnosis, proper follow-up, access to safe food, and diverse treatment options are the norm. If you would like to join us in this mission, there are several ways to get involved. You can donate directly to support our work, sign up for our patient registry to contribute to vital research, or attend our events like virtual Town Halls or Step Beyond Celiac 5Ks. Every little action counts, and together, we can make a significant impact in the lives of those affected by celiac disease. Once again, thank you for being a part of our journey. We can't wait to see what the future holds for us and the celiac disease community!

[caption id="attachment_20352" align="alignnone" width="900"] Photo courtesy of Cody Siezega[/caption] A coalition of non-profit organizations from around the globe builds on their Shine a Light on Celiac partnership to raise awareness for celiac disease, an autoimmune disorder that affects one in every hundred people worldwide, by having buildings light up green on May 16. May is Celiac Awareness Month in the United States, Canada, and the UK. The partnership includes Beyond Celiac, Canadian Celiac Association, Celiacos de Brasil, Celiac Disease Foundation, Coeliac Australia, Coeliac UK, Gluten Intolerance Group, National Celiac Association, Coeliaque Quebec, Coeliaque Canada, Hellenic Celiac Society, and Slovenian Society for Celiac Disease, which have come together to increase awareness and education about celiac disease, a condition where the body has an immune reaction to gluten. People with celiac disease must avoid consuming foods that contain gluten, which can be found in wheat, barley, and rye. Untreated celiac disease can lead to anemia, infertility, osteoporosis and certain cancers. To draw attention to this important issue, the organizations are encouraging buildings across the United States, Canada, and around the world to light up green on May 16. Many notable landmarks, such as Niagara Falls, Cristo Redentor (Christ the Redeemer), and the Quebec Olympic stadium will be participating in this initiative. “This partnership is an important step towards raising awareness of celiac disease and the impact it has on the lives of those affected,” said Alice Bast, CEO of Beyond Celiac. “By lighting up buildings in green, we hope to start conversations and encourage people to learn more about this often-misunderstood condition.” Beyond Celiac is also hosting a virtual 5K and a virtual Town Hall in May to raise awareness and to educate the public about celiac disease. These events will be open to the public and will provide an opportunity to get active and will share valuable information about the disease and how to manage it. And, as part of their celebration of 20 years of service to the celiac disease and gluten sensitive communities, Beyond Celiac will be highlighting the advances made in the last two decades in public awareness and research, as well as providing shareable items on social media. All of this is in addition to the joint work with fellow celiac disease organizations. “We are excited to be partnering with other non-profit organizations in our community to raise awareness for celiac disease,” said Melissa Secord, National Executive Director of the Canadian Celiac Association (CCA). “By coming together, we can make a greater impact and help ensure that people with celiac disease get the support and resources they need.” The coalition encourages individuals and organizations to show their support for celiac disease awareness by lighting up their own buildings or wearing green on May 16. For more information about celiac disease and the coalition’s events, please visit shinealightonceliac.org.

https://www.youtube.com/watch?v=qG89qTOYwd4 Reach Beyond Celiac Ambassador Hayden Bishop recently undertook a project to interview people who have celiac disease: what they struggle with, how they manage the condition, and what they hope the future holds. With this video project, Hayden and Beyond Celiac hope that people can better understand the unique burden of this autoimmune disease.

What is Celiac Disease?

Celiac disease is an autoimmune condition that affects at least 1% of the population. Symptoms can be gastrointestinal, neurological, psychological, or even manifest as a rash. Some people have no symptoms at all. Researchers estimate that half of those with celiac disease are currently undiagnosed or misdiagnosed. The only existing treatment is a strict, lifelong gluten-free diet. Managing the diet can be isolating and overwhelming, and in about 30% of patients, the diet is not enough—that’s why Beyond Celiac supports research for additional treatments and a cure. Until the day when we have additional treatments, we’re dedicated to supporting patients not just at diagnosis, but throughout their whole life; a lifelong condition requires lifelong support.

Real Patients, Real Stories

Hayden was diagnosed with refractory celiac disease, a rare form of celiac disease where the body doesn’t respond to the gluten-free diet. With the help of an extremely strict diet of raw foods and immunosuppressants, Hayden entered remission, but remains closely monitored to this day. For people with celiac disease, there’s no such thing as a cheat day—patients must be vigilant about what they consume each and every day. When asked what it was like to interview others with celiac disease, Hayden said, “empowering and comforting [...] I realized I am not alone, and was able to tell them that all the things they thought only they were experiencing, actually many, many people with celiac disease are going through that same struggle.” You are not alone. If you want to read other stories from people with celiac disease or share your own, check out our Voices of Celiac campaign.

At least 3 million Americans have celiac disease, but as many as 50 to 83% of them could be undiagnosed. Awareness of this autoimmune condition is key to getting people the diagnosis they deserve—here's how one teenager is making an impact in her community.

Grace's Journey to Diagnosis

Grace was diagnosed with celiac disease at five years old. She had been suffering from constipation and stomach pains for a couple of years, but when she became increasingly more lethargic, pale and bloated, her parents took her to the doctor for testing. The pediatric gastroenterologist ordered blood work and her celiac disease tests returned extremely high results. A follow-up endoscopy with biopsy confirmed that she did in fact have celiac disease; it also revealed a bleeding ulcer, a complication of the disease. Grace immediately went gluten-free; as a result, her stomach pain disappeared, her abdomen returned to a normal size, her blood test results normalized and her constipation lessened. In short, she felt a lot better!

Activism for Awareness

Grace has now been gluten-free for more than a decade, and all the while she and her parents have been working to raise awareness of celiac disease. For example, in 2012 Grace had a lemonade stand to raise money for celiac disease research. In 2018, then 14-year-old Grace Tate, alongside her dad, Missouri State Representative Nate Tate, wrote a bill that would make the second Wednesday in May Celiac Awareness Day. Grace assisted with writing and filing the bill, as well as pushing for it to be voted on by committees, the House, and the Senate. She also went to each state representative to personally explain the bill and celiac disease. Some already knew about celiac disease or had family members with it, but the majority had never heard of the disease. When the bill made it into the committee stage and Grace was called upon to testify in front of a committee of 10 state representatives, she did so with confidence and determination. Once the bill passed out of committee, Grace was on a mission to see it picked up by the Speaker of the House so that it could be voted on by the entire House. She spent many days in the capital building visit with representatives and the Speaker. After successfully getting the bill on the docket, it was voted on and passed by the House. However, the Senate proved more difficult. For multiple years, Grace worked to get it passed by both the House and the Senate. Finally in 2022 the bill was added to another bill and passed by both the House and the Senate! In August of 2022 Governor Parsons signed the bill into law, making the second Wednesday of May Celiac Awareness Day for the state of Missouri. On January 24, 2023 Grace went to the Capital and had a ceremonial signing of the bill with Governor Parsons. It took five years of dedication and passion for this dream of Grace’s to come true, and her parents and family are immensely proud of her and her desire to education others on this disease.

Celebrating Celiac Awareness Day

Grace wants to ensure that May 10, 2023, the first Celiac Awareness Day in Missouri, is a big event for her hometown of St Clair, MO! In preparation, she's working with local vendors and businesses to set up stands with delicious gluten-free food and information about celiac disease. We encourage everyone to host an event this May for Celiac Awareness Month—big or small, you can make a difference! We thank community members like Grace for leading by example. Our community is stronger when we all work together to raise awareness of celiac disease.

Beyond Celiac is pleased to announce five multi-year grants totaling $1.6M as part of a celiac disease research grant program. The grants fund research at prestigious institutions in five countries, making Beyond Celiac the premier nonprofit funder of celiac disease research worldwide. These grants will support research into non-invasive biomarkers, the microbiome, and restoring immune tolerance to gluten antigens. The projects, researchers and their institutions are: Research Accelerator Grant Awards

• Shed cell transcriptomics for the identification of celiac disease dynamics by Shalev Itzkovitz, PhD, at the Weizmann Institute of Science (Rehovot, Israel) in collaboration with the Schneider Children’s Medical Center (Petah Tikva, Israel)

• Novel Biomarkers of mucosal damage for non-invasive diagnosis and monitoring of celiac disease by Michael FitzPatrick, MRCP, DPhil, (previous Beyond Celiac awardee) at University of Oxford (Oxford, UK)

Established Investigator Awards 

• Identifying predictors for progressive phenotypes of Celiac disease by Rok Seon Choung, MD, PhD, at Mayo Clinic (MN, USA) in collaboration with the Naval Medical Center (MD, USA) and Icahn School of Medicine at Mount Sinai (NY, USA)

• CeliAct(TIV) – Translocation, Inflammation and Virulence: dissecting mechanisms of gluten-microbiota interactions in Celiac Disease by Sónia Gonçalves Pereira, PhD, at the Instituto Politécnico de Leiria (Leiria, Portugal), in collaboration with the Celiac Disease Research Center at Tampere University (Tampere, Finland)

• Preclinical 2D celiac patient-based iPSC-small intestinal epithelial in vitro model by Kati Juuti-Uusitalo, PhD, at Tampere University (Tampere, Finland)

“Beyond Celiac is committed to a competitive process to identify and fund the world’s best and most promising research to accelerate research for treatments and a cure for celiac disease, and to help our celiac disease community members live longer, fuller lives,” noted Alice Bast, Beyond Celiac CEO. “We have committed more than $3M to directly fund celiac disease research in the last several years as part of our comprehensive Science Plan to have treatments toward a cure by 2030,” she added. While continuing its work as a top recruiter for celiac disease clinical trials, Beyond Celiac led a rigorous grant selection process in the last quarter of 2022. The application process was competitive, with review by the members of the Beyond Celiac Scientific Advisory Board (SAB), led by Beyond Celiac Chief Science and Strategy Officer Salvo Alesci, MD, PhD. Working from recommendations by the SAB, final award selections were based on fit with established funding priorities. Members of the SAB who served on the review committee include: 

• Lisa Fahey, MD, is the co-director of the Center for Celiac Disease at Children’s Hospital of Philadelphia (CHOP)

• Benjamin Lebwohl, MD, is the director of clinical research at the Celiac Disease Center at Columbia University

• Dale Young Lee, MD, MSCE, is the director of the Celiac Disease Program and medical director of clinical nutrition at Seattle Children’s Hospital

• Daniel Leffler, MD, is the director of research, Celiac Center at Beth Israel Deaconess, associate professor of medicine, Harvard Medical School, and medical director, Takeda Pharmaceuticals

• Edwin Liu, MD, is the director of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and professor of pediatrics, gastroenterology, hepatology and nutrition, University of Colorado School of medicine

• Stephen Miller, PhD, is the director of the interdepartmental immunobiology center at Northwestern University Feinberg School of Medicine and research professor of microbiology-immunology

• Joseph Murray, MD, is a professor of medicine at Mayo Clinic and a gastroenterologist in the division of gastroenterology and hepatology, department of internal medicine

• Kari C. Nadeau, MD, PhD, is the John Rock Professor of Climate and Population Studies, Chair, Department of Environmental Health at Harvard T.H. Chan School of Public Health

Donors and philanthropists interested in supporting Beyond Celiac research initiatives can direct contributions to innovative projects.

By Amy Ratner, Director of Scientific Affairs Children with celiac disease can grow up normally and be happy and healthy. It takes pre-planning, either by verifying safe food will be available when they go to someone’s house, a school activity, a party or some other event or by preparing food that they can take. There are many examples of children who’ve never let the diet stand in their way from preschool through college.

Fostering Confidence

The best thing a parent can do for a child with celiac disease is convey the message that the gluten-free diet does not have to limit them in any way. Being positive is extremely important. Kids with celiac disease often have a great attitude and deal very well with the fact that there are times when they can’t have some foods the other kids are having. Usually, that attitude is fostered by their parents who make sure preparations have been made so their child does not feel deprived. Food is often less of a big deal to kids with celiac disease than their parents.

Encouraging Follow-Up

Some new research is showing that kids who are diagnosed very young and don’t have symptoms are the least likely as young adults to get important follow-up healthcare, including blood tests that show when gluten is triggering antibodies. Since these kids have the benefit of being diagnosed at a point where less damage has been done by unknown celiac disease and a good chance at recovery, it’s a shame for them to lose ground by neglecting follow-up. A recent study found that children were more likely to get follow-up care as adults if they: are introduced at around 16 years old to the idea that they will eventually need an adult gastroenterologist; have a pediatric gastroenterologist who initiates a plan for a transfer to an adult gastroenterologist; and complete the transfer of care by 18 years old.

A Happy and Healthy Gluten-Free Adult

When she was diagnosed with celiac disease at two years old, I worried that my daughter would not be able to grow up happy and healthy. But she’s now 27, and she went through everything from preschool to college in a perfectly normal way. We decided early on that the diet should not stop her from doing anything she wanted, and that’s how she has lived her life. She participated in activities ranging from Girl Scouts to dance team, went to college far from home and studied abroad in London. Now she’s all grown up and getting married. If your child is newly diagnosed, I have been where you are, and I know how you feel. So, I hope it helps to know that your child will be OK, too.

Reach Beyond Celiac Ambassador Alyssa Megee spoke with fellow Ambassadors to compile a list of their top tips for teens who have been diagnosed with celiac disease. Read this article for their best advice on growing up with celiac disease!

The Transition to Eating Gluten-Free

It’s important to be patient and take the time to educate yourself about celiac disease when first diagnosed. The period after being diagnosed can be overwhelming, so it’s important to slow down and take one thing at a time. There are a lot of great gluten-free foods out there, but don’t despair if you can’t find a gluten-free version of your favorite “gluten” food—instead, look up recipes and get creative in the kitchen! Trial and error is how you learn.

Going Out to Eat at Restaurants

You can still eat out with celiac disease; you just need to prepare more than before diagnosis. Always remember to ask questions and advocate for yourself. Trust me, you will not be the first person to ask about GF options!

• If you haven’t eaten at the restaurant before, call ahead to ask about their allergy protocol and if they offer gluten-free options.
• Never hesitate to ask for a gluten-free menu—even if they don’t have one, someone at the restaurant will tell you what foods are gluten-free.
• Search online for restaurant reviews from others with celiac disease. The Find Me Gluten Free App is a popular choice for reviews, and it’s free.
• If you have to go to a restaurant that you know you can’t eat at safely, then eat before you leave or bring a snack with you.
• If you’re feeling awkward about not being able to eat, Ambassador Alexandra recommends you reassure and redirect. “First, reassure your friends that you’re okay and that this happens sometimes and it’s not their fault. Maybe even crack a funny joke about it; I always pull a Kourtney Kardashian and say, ‘I mean I can’t eat this but how exciting is it to smell it!’ Then, redirect the conversation to another topic to move on from it.”

It’s important to be able to hang out with your friends and dining out is part of that. Don’t let celiac disease hold you back!

Going to School

Eating gluten-free at school can be stressful since nobody wants to stick out or bring socially unacceptable food. The easiest thing to do is just bring a lunch from home, with foods like wraps, sandwiches, or salads. Other tips include:

• Always keep gluten-free snacks in your locker or backpack.
• Discuss celiac disease with a teacher or other staff member that will be around you so that they are aware of your medical needs.
• Meet with the school nurse if you have more intense symptoms and make a game plan in case you experience a gluten reaction at school. You may want to look into 504 plans and IHPs if this sounds like you!

School Trips

• Talk to the teacher or chaperone about food options before leaving to see if you are bringing your own food or if you are stopping at a restaurant on the way.
• Always bring snacks!
• If school needs proof of condition and medical needs, obtain one prior to going and share copies with the staff.
• If you’re going on a longer trip, always research restaurants and grocery stores beforehand. This would be a good time to use the Find Me Gluten Free app!

International Travel

• Pack your own snacks! Put half in your carry-on so you have easy access to food throughout your flight, and pack half in your checked back so you have food with you in the country you’re traveling to.
• Before traveling, research GF options available in the airports.
• Pack a doctor’s note, especially if you are bringing food through airport security.
• If you are able to, book accommodations that have a kitchen/ette so you can make your own food in a safe space. For example, condos, villas, hotel suites, Airbnb, VRBO, etc.
• After you arrive, visit a local grocery store and buy food items that can be made easily and eaten on-the-go.
• If you can’t speak the main language in your destination city, print allergen cards and keep them on you at all times. A fellow Ambassador recommended equaleats.com.

Going to a Friend’s House

• Before you go over, talk to you friend about what food is available at their house. If there isn’t anything you can have, let them know that you will bring your own snacks.
• If you frequently visit a certain friend, ask them if you could leave a few GF items at their house so you know you always have food there.
• If you eat dinner at a friend’s house, bring up your concerns to the friend’s parents or guardians. Make sure that they are aware of cross-contact and know what needs to be done to ensure that doesn’t happen.
• If your friend’s family orders takeout, see if you can help choose a restaurant that has GF options. Also, ask if you can plate your own dinner so it would decrease the risk of cross-contact.
• At parties, friends may serve pizza, cake, etc. If you know about what they are serving beforehand, you can bring your own gluten-free versions.
• Feel free to share your GF snacks and food with your friends! You may even find that people prefer some GF snacks over “regular” ones.

This may seem like a lot, and nobody ever wants to be different, but it’s important to take certain precautions so that you can be safe while having fun with friends.

How to Advocate for Yourself

The challenges that come with socializing when you have celiac disease can be difficult to manage. When you go out, whether it be with family or friends, finding a place that has GF food will always be on your mind. Many of us feel guilty when we know we are the reason the group can’t eat at a certain restaurant, or if others have to change plans because of our needs. Sometimes those emotions get the better of us, so much so that we want to put ourselves at risk to please others. But you have to be an advocate for yourself and speak up, because you shouldn’t have to put your health aside for others. Surround yourself with people who are accommodating and who make sure you are taken care of. People who will advocate on your behalf can be extremely beneficial since there is someone else who understands celiac disease and will support you. Good advocates can be parents/guardians, siblings, friends, and other family members.

Talking to Unsupportive Individuals

It can be especially difficult to advocate for yourself when those around you are unsupportive. This conversation can be difficult to have, but there are a few ways to handle the situation person when someone is being rude or unsupportive.

1. The first approach is a kind correction. When they make a comment, don’t reprimand them, but rather take the opportunity to correct and educate them. Sometimes people are just ignorant and uneducated about celiac disease, and they have no ill intentions. This is a great way to handle situations with those who are younger than you, your friends, and the elderly.
2. The second way to go about the situation—and this only applies to an authority figure being unsupportive—is to get a third party involved. For example, if you’re having difficulties with a teacher or professor, then get a guidance counselor, school nurse, doctor, or anyone who can help you receive and manage your accommodations involved. Keep in mind that in the case of a teacher being unsupportive, you might only have that teacher for a short period of time, therefore, you won’t have to be around them for too long. This approach could also work for a family member that isn’t reacting well—get your parent or guardian involved to advocate for you.
3. The third and final strategy is the harshest one: cease contact and communication. If someone can’t understand you and your needs, if they gaslight or manipulate you, or if they repeatedly put your health at risk, it’s best to step away from them. Your health is the most important thing in your life, and you can’t afford to risk it. If they fight back against you, be honest and make your reasoning clear. If this person is a family member or someone who you’re forced to be around frequently, set a boundary with them with statement like: “My health comes first, and this relationship doesn’t support that. For the time being, I will need to take a step back from our relationship.”

It Gets Easier

Living with celiac disease is a learning experience, but today there are so many gluten-free food items to try and tips to learn from organizations like Beyond Celiac that it’s totally possible to live your best life in a way that doesn’t put your health at risk. Don’t be afraid to advocate for yourself, and find people around you who treat you and your medical needs with respect!

Gut health has been a trendy topic lately, and for good reason. Good gut health supports the immune system and generally makes you feel better. But gut health is important for everyone, not just those who have gut issues such as celiac disease and gluten sensitivity. Below are tips from Beyond Celiac, the leading catalyst for a celiac disease cure, for managing your gut health in the new year.

1. Consume pre- and probiotic foods. Spinach, cabbage, onions, apples, oranges and grapefruit are just a few examples. Flavonoid-rich spices like ginger, garlic, turmeric, rosemary and oregano also contain pre- and probiotics.
2. Manage lifestyle choices like exercise, alcohol consumption, stress and tobacco use. Making positive changes in these areas can help improve overall gut health and wellbeing.
3. Talk to your healthcare provider if you have symptoms. If you have been experiencing pain, bloating, diarrhea, brain fog or other unexplained symptoms, ask your doctor to be tested for celiac disease. There may be something more serious going on, and a celiac disease test could provide answers.

Depression and anxiety are symptoms of celiac disease, and research has shown that imbalances in the gut microbiome can also contribute to depression and anxiety. “An inflamed or leaky gut can make working, socializing and doing everyday tasks difficult,” said Beyond Celiac CEO Alice Bast. “If you are experiencing ongoing GI or non-GI symptoms, talk to your doctor about getting tested. Celiac disease is often missed or misdiagnosed, leading to years of pain and frustration.”

Celiac Disease and the Microbiome

Celiac disease is an autoimmune disorder that is triggered by the consumption of gluten, a protein found in wheat, barley, and rye. When someone with celiac disease eats gluten, it causes an immune response that damages the small intestine and interferes with the absorption of nutrients. Research has shown that celiac disease can also affect the gut microbiome. Studies have found that individuals with celiac disease often have an imbalance in their gut bacteria, with lower levels of beneficial bacteria and higher levels of harmful bacteria. This can contribute to the malabsorption of nutrients and inflammation that are associated with celiac disease. Celiac disease affects one in 133 Americans. For more information about gluten sensitivity and celiac disease, refer to the Beyond Celiac publication, The Mystery of Celiac Disease.

Two-thirds (67%) of Hispanic Americans still lack information and awareness of celiac disease and gluten sensitivity, according to a nationwide benchmark survey conducted by The Harris Poll on behalf of Beyond Celiac. Renowned opera tenor and Beyond Celiac Ambassador Arturo Chacón-Cruz, a native of Sonora, Mexico, wants to change these statistics. [caption id="attachment_19928" align="alignleft" width="236"] Arturo Chacón-Cruz performing at the 2019 Go Beyond Celiac concert[/caption] Chacón-Cruz, who along with his mother and son has celiac disease, wants to help other Hispanics know the symptoms and process for getting diagnosed and treated for celiac disease. The survey showed that only 36% of Hispanic Americans know that half or more of people with celiac disease are undiagnosed, and as few as 21% know that celiac disease often runs in families.  The only current way to manage celiac disease is through a strict gluten-free diet – foods free from wheat, rye and barley. If left untreated, celiac disease, a serious autoimmune condition that causes damage to the small intestine resulting in debilitating symptoms, can lead to a number of long-term health problems, including infertility and some types of cancer. Celiac disease affects one in 133 Americans. “We know many in our community lack awareness about celiac disease, and I hope to change that so everyone with celiac disease can receive the diagnosis and treatment they deserve,” said Chacón-Cruz. “Food is such a big part of Hispanic and Latino culture and heritage. We can still live a full life and enjoy a shared meal with family and friends, we just need to change the way we eat until there is a cure.” According to the survey, only about half (52%) of Hispanics know that following a strict gluten-free diet is the way someone with celiac disease can control it. “Celiac disease is a misunderstood and misdiagnosed disease,” Beyond Celiac CEO Alice Bast said. “We believe it’s important that all Americans become more aware of celiac disease and its symptoms so they get an accurate diagnosis and the treatment needed to live a healthy life.” “I was so sick before I got diagnosed, my life was difficult as a professional opera singer who has to spend so much time traveling for work,” said Chacón-Cruz. “Now knowing that I have to stay strictly gluten-free, I have a different challenge with all the travel I do, but it’s also hard for people like my mother and son who aren’t traveling as much. Ultimately I hope we can find a cure so these problems don’t exist.” Chacón-Cruz began partnering with Beyond Celiac in 2019 to help the organization raise awareness and to generate support for research for treatments and a cure. Using his platform in the world of opera, he has raised visibility and is featured in a video in which he tells his story and why he is so passionate about the work of Beyond Celiac. https://www.youtube.com/watch?v=pEeMAZ-CU-U A report on the survey results, The Mystery of Celiac Disease: The Need for Greater Awareness and Accelerating the Quest for a Cure can be found online at 2022 Beyond Celiac Survey Report. The report also presents the facts about the disease, and outlines how Beyond Celiac is taking steps to accelerate the quest for a cure.

You went to the doctor’s office, explained your symptoms, and got a TtG blood test, commonly used to test for celiac disease. But the blood screening returned negative for celiac disease-related antibodies, and you’re confused. You believe you fit the characteristics of someone with celiac disease, or maybe you feel better on a gluten-free diet. What’s going on? What else could it be if not celiac disease? In this article, we’ve listed a few conditions that are often misdiagnosed as celiac disease (and vice versa!) or have many similar symptoms. We encourage you to review this and bring any information to your doctor if you want to learn more or do additional testing. Your doctor can give personalized recommendations and help you on your journey to better health.

Was the Right Test Done Properly?

Were You Eating Gluten?

When you get the blood test for celiac disease, you should be eating gluten daily for at least the past six weeks. If you went gluten-free before the blood test, it could return incorrect results. If you have already gone gluten-free but want to get tested for celiac disease, you must be eating gluten. Learn more about gluten challenges.

Do You Have an IgA Deficiency?

An estimated 2% of people with celiac disease also have selective immunoglobulin A (IgA) deficiency. Individuals with an IgA deficiency do not make or have very low blood levels of IgA antibodies. These antibodies are responsible for fighting infections in mucus membranes throughout the body. If someone has IgA deficiency and celiac disease, the IgA deficiency can cause a false negative on a celiac disease antibody test. Those with IgA deficiency should be tested for IgG-TtG antibodies instead of IgA-TtG.This is because the IgA-TtG test will not be accurate in those with IgA deficiency. Learn more about IgA deficiency.

Did You Do an EMA Blood Test?

A study from 2021 brought the accuracy of the TtG blood tests into question. Celiac disease is often diagnosed with a positive TtG-IgA test, followed by an endoscopy and biopsy that shows damage to the lining of the small intestine. When this blood test is negative a biopsy often isn’t done. But the study, published in the Journal of Clinical Gastroenterology, calls the sensitivity of the TtG-IgA test into question and raises the issue of frequent false negatives. A negative result of the test should be “viewed cautiously” the study says, noting that further testing should often be done. Additionally, a registry of celiac disease patients at the University of Alabama at Birmingham found that 80% of Black patients with biopsy-confirmed celiac disease had negative results on the TtG test. While the study sample was small, these results raise the question of how well the TtG test works for patients who are Black. If you are a patient who tested negative with a TtG test, but you think you could have celiac disease, consider asking your doctor for an IgA endomysial antibody (EMA) blood test and/or an upper endoscopy with biopsy. The EMA blood screen is highly specific for celiac disease.

Was This Follow-Up Testing?

If you have already been diagnosed with celiac disease, have been on a gluten-free diet, and return later for follow-up testing, your blood tests should be negative. That means the gluten-free diet is working, and your immune system is not making as many (or any) antibodies to gluten. You still have to remain on a gluten-free diet for the rest of your life.

Consider Getting an Upper Endoscopy with Biopsy

An upper endoscopy with biopsies is considered the gold standard for diagnosing celiac disease. The blood tests, while highly accurate for positives, can produce false negatives. A study by researchers from the Mayo Clinic concluded that false negative results of the anti-tissue transglutaminase immunoglobulin A (TtG-IgA) test could lead to under-diagnosis of celiac disease. After adjusting for verification bias, “the sensitivity of [TtG- IgA] could be as low as 35.4%,” said Isabel Hujoel, MD, lead study author. “If this is accurate, it would mean that [TtG-IgA] may perform worse than the flip of a coin.” It is important to note that the study does not suggest any problem with positive TtG-IgA results. For patients who want to do thorough testing or have reasonable suspicion of celiac disease, it may be worth it to get an upper endoscopy with biopsies, even with a negative blood test.

Explore Other Conditions

Some conditions have similar symptoms to celiac disease. Patients with some of these other conditions still benefit from a gluten-free diet, while others will not and need other treatments to resolve symptoms.

Gluten Sensitivity

Non-celiac gluten sensitivity (NCGS) is the term for those who have symptoms when they eat gluten similar to those with celiac disease but who don’t have the same antibodies and intestinal damage seen in celiac disease. To resolve symptoms, patients with NCGS must go on a strict, gluten-free diet. Learn more about gluten sensitivity.

Inflammatory Bowel Disease: Crohn’s or Colitis

Inflammatory bowel disease (IBD) can refer to multiple conditions, but three to be aware of are Crohn’s disease, ulcerative colitis, and microscopic colitis. All are characterized by long-term inflammation in the digestive tract, but colitis affects the large intestine (colon), while Crohn’s disease affects the small intestine and occasionally the large intestine and upper GI tract. Symptoms include diarrhea, abdominal pain and cramping, fatigue, blood in stool, mouth sores, reduced appetite, fever, and more. Many medications can help ease symptoms. In some cases, surgery is recommended. Going gluten-free may resolve some symptoms in some patients. Learn more about inflammatory bowel disease.

Irritable Bowel Syndrome (IBS)

Irritable bowel syndrome (IBS) is a chronic condition that affects the large intestine. Symptoms of IBS include cramping, abdominal pain, bloating, gas, diarrhea, and constipation. For IBS to be diagnosed, symptoms must be ongoing and present at least three days a month in the last three months. IBS does not cause changes in bowel tissue or increase the risk of developing colorectal cancer. Symptoms can sometimes be controlled by managing diet, lifestyle, and stress. The gluten-free diet may help some patients. Learn more about irritable bowel syndrome.

FODMAPs

FODMAPs are short-chain carbohydrates that may be poorly absorbed in the small intestine. This can cause more water to be pulled into the colon and rapidly ferment or be broken down by bacteria in the bowel. This can cause symptoms like increased gas, bloating, constipation/diarrhea, and pain. The first phase of treatment is a strict elimination diet, which removes foods high in FODMAP for 2-6 weeks. If you feel significantly better during that time, then FODMAP carbs may indeed affect you. The second phase of the diet involves reintroducing foods by type. For example, the lactose challenge involves adding back in milk, cottage cheese, and/or ice cream. If those don’t seem to cause symptoms, then you can try another challenge group. Wheat, barley, and rye contain both gluten and FODMAPs, so the gluten-free diet can benefit those sensitive to FODMAPs. It’s best to work with a registered dietitian nutritionist (RDN) when determining which FODMAPs to eliminate. Learn more about the FODMAP diet.

Small Intestinal Bacterial Overgrowth (SIBO)

Small intestinal bacterial overgrowth (SIBO) occurs when there are too many bacteria in the small intestine, usually types of bacteria that aren’t supposed to be in the small intestine. It often occurs after surgery or the development of a disease. Symptoms include diarrhea, loss of appetite, abdominal pain, nausea, bloating, and feeling uncomfortably full after eating. This condition is treated with antibiotics. In some cases, surgery is also recommended.

Moving Forward

If you want or need more testing, please work with a doctor, gastroenterologist, or registered dietitian (RD)/registered dietitian nutritionist (RDN). Regardless of your diagnosis (or lack thereof), we hope you find answers and can start feeling better soon!