Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate
  • Jefferson Adams
    Jefferson Adams

    Girl Pens Book About Her Journey Through Extreme Celiac Disease

    Reviewed and edited by a celiac disease expert.

    Ten-year-old Lillian Bordoni's positive attitude helped her to recover from the worst case of Celiac Disease that Children’s Hospital Colorado has ever seen. She's now writing a book about her journey.

    Girl Pens Book About Her Journey Through Extreme Celiac Disease - Image: CC--Frédéric BISSON
    Caption: Image: CC--Frédéric BISSON

    Celiac.com 12/05/2018 - Everyone with celiac disease has their war stories. Stories of uncomfortable of painful symptoms. Stories of tough, slow diagnosis. Of accidental gluten ingestion. 

    Picture the worst case of celiac disease you can imagine with bad symptoms and a seemingly endless quest for a diagnosis. Now imagine you’re ten years old and that worst case is you. That’s the story of 10-year-old Lillian Bordoni, whose positive attitude is helping her to recover from the worst case of Celiac Disease that Children’s Hospital Colorado has ever seen, and inspiring even the doctors she credits with saving her life.

    Celiac.com Sponsor (A12):
    Bordoni’s book, “Cecilia the Celiac Superhero,” tells the story of her long and complicated fight with celiac disease, and she prevailed via a diagnosis, a gluten-free diet, and eventually, a change of location. 

    She hopes to someday share her story with others. It’s a story that starts when Lillian was around four years old and living with her family in Kansas. Lillian suffered from what were, in retrospect classic symptoms of celiac disease. However, a diagnosis remained elusive. The family saw numerous doctors until they found a doctor who tested her for celiac disease and made a formal diagnosis. Even after the whole family cut out gluten, Lillian will still unable to keep food down, and lacked the energy to play outdoors.

    Eventually, the Bordonis traveled to the celiac clinic at Children’s Hospital Colorado, where Dr. Edward Hoffenberg helped them to figure out that Lillian’s problems were being aggravated by the fact that the family lived “in the heart of wheat country,” said Lillian’s mom, Miriah Bordoni.

    “There was wheat farming all around us. There were four of the largest grain elevators within blocks of our house that were processing wheat 365 days a year.” Breathing gluten every day was not an option, so the family moved to Colorado. Ever since then, Lillian has been healthy. Her experience has inspired her to write a book about her challenges with celiac disease.

    Of her book, Lillian says “It’s about Cecilia which is this girl here, and she has to beat gluten and cross contamination, which I had to beat too, but I turned it into like a superhero story so that it would be fun and interesting for all kids.”

    Lillian is in the beginning stages of having her book published. Once that happens, Children’s Hospital Colorado will distribute copies to all newly diagnosed celiac patients.

    Read more.


    User Feedback

    Recommended Comments

    Awol cast iron stomach

    I am glad Lillian 's family realized the environmental and processing of wheat so near her home hindered her healing and relocated. I am certain that was not easy, but truly shows the parents'  love, dedication, and unwavering support for their daughter . 

    Link to comment
    Share on other sites


    Create an account or sign in to comment

    You need to be a member in order to leave a comment

    Create an account

    Sign up for a new account in our community. It's easy!

    Register a new account

    Sign in

    Already have an account? Sign in here.

    Sign In Now

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate
  • About Me

    Jefferson Adams

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University. His articles, essays, poems, stories and book reviews have appeared in numerous magazines, journals, and websites, including North American Project, Antioch Review, Caliban, Mississippi Review, Slate, and more. He is the author of more than 2,500 articles on celiac disease. His university coursework includes studies in science, scientific methodology, biology, anatomy, physiology, medicine, logic, and advanced research. He previously devised health and medical content for Colgate, Dove, Pfizer, Sharecare, Walgreens, and more. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of numerous books, including "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

    >VIEW ALL ARTICLES BY JEFFERSON ADAMS

     


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Related Articles

    Jefferson Adams
    Celiac.com 06/17/2015 - Refractory celiac disease type II (RCDII) and EATL (Enteropathy Associated T-cell Lymphoma) are pre-malignant complications of celiac disease. However, there is scant medical literature and data what role malnutrition and intestinal absorption may play in these conditions.
    With this in mind, a team of researchers set out to conduct a comprehensive assessment of nutritional status and intestinal absorption capacity of patients with RCDII and EATL, and to compare that with data of newly diagnosed celiac disease patients. The research team included N.J. Wierdsma, P. Nijeboer, M.A. de van der Schueren, M. Berkenpas, A.A. van Bodegraven, and C.J. Mulder.
    They are affiliated with the Department of Nutrition and Dietetics, the Department of Gastroenterology, the...


    Jefferson Adams
    Celiac.com 01/30/2017 - A team of researchers recently set out to analyze potential changes in occurrence of complicated coeliac disease over the last 25 years.
    The research team included W. Eigner, K. Bashir, C. Primas, L. Kazemi-Shirazi, F. Wrba, M. Trauner, and H. Vogelsang. They are variously affiliated with the Division of Gastroenterology and Hepatology, Department of Internal Medicine III, Medical University Hospital of Vienna, Vienna, Austria, and with the Department of Pathology at the Medical University of Vienna in Vienna, Austria.
    The team included and evaluated a total of 1,138 patients based on time of first presentation at the Medical University of Vienna, Austria.
    They assessed occurrences of refractory celiac disease and associated malignancies in 5-year intervals...


    Jefferson Adams
    Celiac.com 03/03/2017 - Previous studies have shown us that men are generally less troubled living with celiac disease than are women, but most studies of men with celiac disease have been mostly quantitative, and have a bio-medical emphasis.
    A team of researchers recently set out to explore the social experience of young men with screening-detected celiac disease and to highlight daily life situations five years after diagnosis. The research team included Ethel Kautto, Cecilia Olsson, Anneli Ivarsson, Phil Lyon, Agneta Hörnell, and Lena Alex. They are variously affiliated with the Department of Food and Nutrition and Umeå Center for Gender Studies, Umeå University, Sweden, the Department of Food and Nutrition, Umeå University, Sweden, the Department of Public Health and Clinical Med...


    Jefferson Adams
    Celiac.com 09/17/2018 - Her name is Hawkeye, she’s a black lab, and her mission is to detect gluten for a young man named Toby, who gets terribly sick if he eats food that contains gluten. Hawkeye is up to 98% accurate at detecting gluten with just a few sniffs. 
    Hawkeye was also expensive, costing a princely $16,000, not including food, and vet bills. That may sound expensive, but, says Toby’s mom, Amy "when you think about it trainers are often training only one to two dogs at a time and our trainer, she only trained one dog at a time and it took a year.”
    In Toby’s case, the community rallied to raise the money to buy Hawkeye, who is a registered service dog, and so can accompany Toby nearly everywhere. Everyone loves Hawkeye and her role in Toby’s life. Amy calls Hawk...


  • Recent Activity

    1. - CatherineWang replied to B1rdL0ver's topic in Related Issues & Disorders
      40

      Dealing with constant nausea and just feeling awful.

    2. - cristiana replied to BunnyBrown's topic in Related Issues & Disorders
      3

      Recently had my esophagus dilated

    3. - cristiana replied to twe0708's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      54

      How Long Do Celiac Patients Live?

    4. - Exchange Students replied to Exchange Students's topic in Parents, Friends and Loved Ones of Celiacs
      2

      Exchange Students who are celiac in need of host

    5. - Scott Adams replied to Exchange Students's topic in Parents, Friends and Loved Ones of Celiacs
      2

      Exchange Students who are celiac in need of host


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,155
    • Most Online (within 30 mins)
      7,748

    Spitcard
    Newest Member
    Spitcard
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Popular Now

    • Sunflowers06
      6
    • Momkaren
      10
    • Elizabeth M Blair
      5
    • B1rdL0ver
    • twe0708
      54
  • Popular Articles

    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
  • Upcoming Events

×
×
  • Create New...