Auggie is Back in the Game!
For an athlete of any age, fatigue can be a hindrance to peak performance – especially when it becomes a chronic condition. For then 9-year-old August (Auggie) Tate of Malone, Wisconsin, his excessive tiredness and on-again, off-again stomach pains were negatively impacting his sports activities, including baseball, hockey and basketball.
In April 2021, following a particularly bad stomach ache, Auggie’s parents, Missy and Jason, took him to see their pediatrician, who ran a series of blood tests and took an abdominal X-ray. One test in particular detected certain elevated antibodies in Auggie’s blood that suggested celiac disease, and within a week’s time, the Tates were able to be seen by Ankur Chugh, MD, MCW assistant professor and pediatric gastroenterologist at Children’s Wisconsin (Children’s) in Milwaukee. Dr. Chugh and his team performed additional tests on Auggie, including an upper endoscopy and biopsy of the small intestine, which confirmed the diagnosis of celiac disease.
Dr. Chugh has served as director of the Bonnie Lynn Mechanic Celiac Disease Clinic at Children’s since 2017. He was drawn to pediatrics because “kids are a pleasure to work with and it makes coming to the office each day worthwhile,” and then to the subspecialty of gastroenterology because “there are multiple organs to work with and many things that could be happening.” He also enjoys the continuity of interaction and relationship-building with his pediatric patients.
Dr. Chugh’s interest in celiac disease was piqued while serving a fellowship at the University of Chicago, which had one of the only celiac centers in the country that melded both clinical care and basic science research into the disease.
The Tate Family is very grateful for the excellent care received from Dr. Ankur Chugh and his team at the Bonnie Lynn Mechanic Celiac Disease Clinic at Children’s Wisconsin. Shown here during a recent visit are (l-r): Auggie Tate, Dr. Chugh, Missy Tate, Jason Tate and Ella Tate.
“Once the diagnosis of celiac disease is confirmed, the education begins,” Dr. Chugh shares. “I discuss with the families what celiac disease is, what’s causing it, what the risks are from a nutritional deficiency standpoint and how to read labels. We even designed cartoon-based videos that provide more information.” The Celiac Clinic recently created an online education platform and offers one-on-one virtual follow-up classes; in-person educational consultations are available as well. Dr. Chugh sees about 250-300 pediatric celiac patients a year from throughout Wisconsin and northern Illinois.
The Challenges of Celiac Disease
Celiac disease is a serious autoimmune condition that occurs in genetically predisposed individuals wherein the ingestion of gluten leads to damage in the small intestine; an estimated 1 to 2 percent of people worldwide have celiac disease, but only about 30 percent are properly diagnosed, according to the Celiac Disease Foundation. It can present in children as early as 18 months of age and anytime throughout one’s life.
When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their bodies mount an immune response that attacks the small intestine, producing symptoms such as stomach pain, bloating, constipation and diarrhea. These attacks lead to damage on the small fingerlike projections (villi) that line the small intestine and promote nutrient absorption. When the villi become damaged, nutrients cannot be absorbed properly into the body. Celiac disease can develop at any age after individuals begin consuming gluten and, left untreated, can lead to additional serious health problems including anemia, osteoporosis, infertility, small bowel cancers and other autoimmune disorders.
(Pictured right: Auggie at the time he first began experiencing symptoms, February 2021.)
The tissue transglutaminase IgA (tTG-lgA) blood test is a primary screening tool that checks for antibodies (or immunoglobulins) – proteins produced by the immune system. A high number of antibodies in the blood indicates celiac disease, which can be confirmed through a biopsy of the small intestine performed during an upper endoscopy.
Currently, the only treatment for celiac disease is a lifelong adherence to a strict gluten-free diet, which includes avoiding foods with wheat, rye and barley. Even ingesting small amounts of gluten can trigger small intestine damage.
“It’s a massive ordeal to change one’s diet to become gluten-free,” Dr. Chugh shares. “The kids and parents are scared and nervous when they come in to see me. We recognize that they have many questions, try to walk them through the uncertainties and share with them a timeline as to when they will get better. We try to instill a quiet confidence by telling them that we have done this before, we know what to expect and are there to support them. We want to normalize this for kids as much as possible.”
“It’s super great to see the kids when they come in for their three-month checkup and typically are doing a lot better,” Dr. Chugh adds. “I see them every three to six months until we hit smooth sailing. Then I will see them annually to monitor them and update them on new literature and new products. It also becomes more about how the kids are adjusting to the disease at different ages.”
The Invaluable Assistance of the Dietitians
After meeting with Dr. Chugh a second time and receiving the definitive diagnosis of celiac disease, the Tates were referred to Nicole Martin, RD, a senior clinical dietitian and certified specialist in pediatric nutrition within Children’s Wisconsin northeast region, primarily in Neenah at the Children’s Wisconsin-Neenah Clinic, who has served for eight years as a critical educational resource and pediatric celiac dietitian. Martin partners with Lauren Matschull, MBA, RD, a clinical dietitian specialist and certified nutrition support clinician who works with Dr. Chugh’s patients at Children’s in Milwaukee and who has run the celiac disease support group for more than a decade.
“Our typical process with the celiac patients is that after they see Dr. Chugh for the definitive diagnosis, the families will come to either Lauren or me for the education, which can be either in person or electronic with virtual follow-up,” Martin notes. “We also facilitate the celiac disease support group, which has enabled us to see Auggie and his family a few times a year.”
Martin met the Tates through an in-person class and was able to work with Auggie’s special needs as a traveling athlete – making sure he would be able to find gluten-free options on the road and ensuring that he carries adequate gluten-free snacks such as granola or protein bars, nuts, cheese and other sources of protein.
Auggie resumes playing baseball with his recreational league team, summer 2021.
“Nicole was a tremendous help, especially because Auggie was so involved in sports, which entails eating out and being in social settings with the team. We wondered how we were going to make this work,” Missy shares. “Nicole provided a lot of great information to help put us at ease. Also, one of the reasons we love Children’s is the support group they have. We were in the middle of the pandemic when Auggie was diagnosed, so we weren’t able to take advantage of in-person support opportunities, but they did a great job facilitating virtual meetings during which Auggie was able to interact with other kids in the region who are dealing with celiac disease,” Missy adds.
Martin is extremely pleased with Auggie’s progress. “It has been great to see Auggie gain confidence and have a willingness to speak up at these virtual support group events, to chime in on camera and share information about his favorite foods or snacks. He’s bright and bubbly, and has adapted well to the gluten-free lifestyle,” she shares. “I especially love how Auggie motivates and encourages others – both the kids and the parents.”
Connecting with Other Celiac Families
An important component of Auggie’s success has been the opportunity to bond with other kids with celiac disease. “Early on, they had a conference call for the kids, and Auggie was on screen and excited to meet other kids,” Jason says. “It’s hard to articulate how scary this can be. Just saying you are going to change your diet doesn’t begin to approach the challenges of living with celiac disease as the new normal. The support group for kids has really helped Auggie turn the corner with how he was going to tackle his condition.”
In December 2022, the Tates joined with about 20 other families at an in-person gluten-free holiday dinner at Children’s that also featured a presentation on current treatments for the disease as well as celiac disease research, including clinical trials. “The cookie exchange was a big hit and helped to normalize things,” Missy says.
(Pictured left: Auggie attends a Milwaukee Bucks game in December 2022 with his family and other members of the Celiac Disease Family Advisory Board.)
Jason adds, “That dinner was really helpful for mom and dad as well because we were really on an island, and we talked to another group of parents there. Just hearing about tips and tricks ... it’s difficult to articulate how meaningful that is, especially for Auggie, who got to talk to other kids. The ability for him to network with other kids with celiac disease has been huge.” The dinner is free of charge to all patients and families through a generous donation from the Bonnie Lynn Mechanic Celiac Disease Fund.
The Tates are dedicated to remaining active within the celiac disease community and have signed up to participate in biobanks and other research opportunities for future studies to help patients with the disease. Additionally, Missy has joined a newly formed statewide Celiac Disease Family Advisory Board sponsored by Children’s, which is helping to make patients’ lives better, including additional events for kids and an informational newsletter.
Auggie is Back in the Game!
Dr. Chugh and his team have continued to monitor Auggie’s antibodies, which have taken more than 18 months to return to a normal level. As a result of this good news, Auggie’s semiannual follow-up visits can now move to once a year with his primary care physician. And, importantly, Auggie has gained close to 35 pounds in the almost two years since his diagnosis.
“Once I started following a gluten-free diet, I could finally play sports again without any problems,” Auggie shares. “And it was great to meet with Dr. Chugh and his support group because they gave us good information in the early months. It was cool because I met some kids my age and we talked about the gluten-free foods we like. My favorites are gluten-free tacos (the shells), steak and rice, and gluten-free pizza.”
Auggie will need to remain gluten-free throughout his life, since if he were to ingest cross-contacted foods, he could suffer from severe stomach pains and be unable to participate in activities. Luckily, there are hundreds of certified gluten-free products available in grocery stores, numerous restaurants that offer gluten-free options, and cellphone apps that note what products are gluten-free or processed in a facility that processes gluten products, and where to find gluten-free restaurants when traveling.
The Tates are ecstatic to see Auggie returning to his old self. “The support groups, Dr. Chugh and his team … having that full package of care is a huge thing for us. The services, the resources and the caring that we received from Children’s are priceless,” Missy says.
“Dr. Chugh’s compassion and calming presence during our first two meetings were the major reasons Auggie was able to bond with him so quickly,” Jason notes. “Dr. Chugh’s care and expertise have been truly life-transformative for our family and how we live with celiac disease.”
This past summer, Auggie was the first player on his travel baseball team to hit a home run over the fence, and he also pitched a combined no-hitter. In early February, Auggie was selected to participate on an Amateur Athletic Union (AAU) spring select basketball team, and in the middle of the month, he competed in his 6th grade school team basketball tournament (pictured right).
“Continuing with sports has been a really big part of Auggie’s story,” Jason says. “Youth sports is so competitive these days, and Auggie was on travel baseball and travel basketball – which is a really big deal since it’s very hard to make those teams. With Dr. Chugh’s help, the fact that Auggie was able to stay on these teams is truly remarkable.
– Sara L. Wilkins