This week we talked to Nicole Kittleson! Nicole's daughter Addy was diagnosed with Crohn's disease when she was 8 years old but that diagnosis wasn't easy to get to. Addy wasn't growing or gaining weight, her eyes became dull and her hair started falling out. Nicole brought her concerns to her daughter's pediatrician but they just encouraged her to feed her more calories but Nicole knew something more was going on. When her daughter started experiencing skin inflammation and complaining about blood in her stool and Nicole finally demanded that her daughter get the tests she needed to get a definitive diagnosis of Crohn's. We talked to her about Addy's unusual and severe symptoms of a flare and their decision to use the Specific Carbohydrate diet to treat her disease for several years. We talked about the ramifications of using this diet including the cost, the time, and the impact that it had on family traditions and culture. We talked about how Nicole, Addy, and the rest of the family incorporated the SCD and these changes and needs into their daily routine and how they coped as a family. Finally we talked about how parents can also experience medical trauma as part of the process of their child having a chronic illness and about how parents can care of themselves while also caring for their child with IBD. In Nicole's case her own diagnosis of an autoimmune condition- Lupus- forced her to understand her need to care for herself as well as her family.

We had a deep and impactful conversation with our friend Nicole as well as some laughs. We know that you'll be inspired by her and her daughter Addy too.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Nutritional Therapy for IBD- great source of info in diets and IBD
• Info on the Specific Carbohydrate Diet- Nutritional Therapy for IBD
• Diet info from the Crohn's & Colitis Foundation- USA
• Info on Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
• Community & Support programs- Crohn's & Colitis Foundation- USA
• IBDesis- South Asian IBD Alliance's support program
• Info on Toxic Megacolon- Stanford Children's Hospital

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This week we met Victorien Madsen! Victorien lives in The Netherlands and was diagnosed with UC after the birth of her 2nd child. We talked to her about navigating this new disease while parenting young children. Trying to find the right treatment option and finally finding the Specific Carbohydrate Diet before the internet was really even a thing. We talked to her about how she incorporated that diets into her life and her family's routine. We talked to her about modifying recipes and how she learned to create delicious foods for herself. We discussed how she started volunteering to run a support group for people with IBD who are interested in using diet to complement their treatment and finally how all of that led her to start volunteering with Nutritional Therapy for IBD.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

• Nutritional Therapy for IBD
• An article about Victorien and her diet journey- in Dutch!
• Curing Food- Victorien's website- in Dutch!
• Victorien's pecan waffle recipe
• Nutritional Therapy for IBD's Diet comparison chart

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This week we had such a great conversation with Kate Scarlata, MPH, RD! Kate is a Boston-based registered dietitian and New York Times best selling author with 30+ years of digestive health experience. Kate is a world-renowned low FODMAP diet expert and invited speaker on the role of food intolerance in GI disorders at numerous international and national gastrointestinal health conferences from Harvard Medical School to Monash University. She specializes in digestive health including treatment for: IBS, celiac disease, inflammatory bowel disease, mast cell activation syndrome and small intestinal bacterial overgrowth (SIBO).

We talked to her about so many things! We discussed patients that have co-occurring IBD and IBS- how frequent that is and how to best treat them. We talked about food intolerances, intolerance testing, and elimination diets. We discussed medical equity and her efforts to highlight the lack of medical diet-friendly- like for celiac- food offered in food pantries. We talked about common myths surrounding gut health that she asks her guests on her podcast called The Gut Health podcast to discuss. Finally we discussed her new book that she co-authored with Dr. Megan Riehl called "Mind Your Gut: The Science-Based, Whole-Body Guide to Living Well with IBD."

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Kate's Blog that she mentions
• Kate and Megan's book
• Dr. Megan Riehl's episode
• Kate and Megan's podcast -The Gut Health Podcast

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This week we spoke to Rocio Castrillon- better known for her popular Instagram account @VoiceforIBD! She shared her story of being diagnosed with Crohn's disease and how a lack of information caused her to suffer in silence with fistulizing disease. We talked to her about finally getting involved with Team Challenge with the Crohn's & Colitis Foundation in the USA and how that helped her find a large community of other people living with IBD. The opened up other volunteer opportunities and so we talked to her about the many ways that she's gotten involved with the community including advocacy work, leading a Spanish-speaking support group, educational initiatives, and more. We especially discussed her support group that includes people from many parts of the world and what are some commonalities she's observed and the people she helps. Finally we talked about how all of her advocacy work and involvement led her to being nominated for the National Board of Trustees for the Crohn's & Colitis Foundation here in the US. We discussed how she's using this seat at the table and this platform to raise even more awareness of the needs of the Hispanic/Latino IBD community and so much more.

We really loved getting to know Rocio more during the conversation and we know you'll appreciate all that she does for our community as well!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Grupo de Apoyo para Adultos con EII
• Article by Rocio in Crohn's & Colitis 360
• Crohn's Disease Patient Experiences and Preferences wit Disease Monitoring: An International Qualitative Study - Crohn's & Colitis 360

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This week we had a great conversation with Mason Milne! Mason is the host of the Crohn's and Autism Awareness Advocate podcast! We talked to him about being diagnosed with Crohn's when he was 17 years old and a bit about the health system in the UK where he lives. We talked about what it's been like navigating the healthcare system with autism and advocating for his needs. Mason gave some advice for other people living with autism that may also need to communicate their specific needs or preferences to their healthcare team. We talked a lot about his podcast, the unique series that he does, and how he recruits guests- including some famous ones! And finally we discussed his love of the show Dr. Who and how attending conventions has lead to him recruiting some very cool guests to his show!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Mason's YouTube channel
• Mason's episode with the 8th Doctor- Paul Magan
• An interview with Mason about living with Crohn's and Autism- Crohn's Colitis UK

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This week we had a great time getting to know Dr. Kim S. Beall! Kim is a Doctor of Pharmacy whose son was diagnosed with Crohn's disease when he was 13 years old. After she and her son discussed his treatment options with his healthcare team and they did some research he decided to try Exclusive Enteral Nutrition (EEN) to get his Crohn's in remission. We discussed how Kim and her family supported him during this time and how he coped with being on this very restrictive diet. Nutrition has been central to Kim's son’s management of Crohn’s disease since his diagnosis in 2013 at age thirteen. Nutritional therapy has been an essential part of providing optimal care and has afforded him the best opportunity to manage life with Crohn’s disease successfully.

After her son achieved remission, she and her husband, Anthony Beall who is a physician, realized that there really was a lack of information about dietary therapies for IBD, that many healthcare providers didn't really know where to look, and that there was a huge need for a repository of this information. So they started the nonprofit organization Nutritional Therapy for IBD in 2019 to fill an essential void in providing evidence-based knowledge, tools, and resources to empower patients and aid clinicians seeking to leverage nutrition alongside medications in inflammatory bowel disease. Their mission is to establish evidence-based nutritional therapy as a foundational part of IBD treatment to enhance the well-being and health outcomes of all children and adults with Crohn’s disease or ulcerative colitis. We empower clinicians and patients with essential, current, comprehensive, educational, and innovative resources. We talked to Kim about starting this nonprofit, some of the great tools available for patients and clinicians, the recipe database, and how her nonprofit has been received by the medical community.

We were so inspired by Kim's passion and the all of the great things that Nutritional Therapy for IBD is doing.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• The Diet Comparison Chart discussed in this episode- Nutritional Therapy for IBD
• Information for Healthcare Professionals- Nutritional Therapy for IBD
• Recipe Database
• Abigail Marie- The Chef with IBD's episode- volunteer with Nutritional Therapy for IBD
• Nicole Pavlin's episode- volunteer with Nutritional Therapy for IBD
• Barbara Olendski's - RD- video
• Information on Exclusive Enteral Nutrition- Nutritional Therapy for IBD

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This week we had such a great conversation with Dr. Megan Riehl! Dr. Riehl is a GI Psychologist, Assistant Professor of Medicine and the Director of GI Behavioral Health at the University of Michigan. We talked to her about all things IBD and mental health and how she helped to establish and incorporate GI behavioral health into the IBD center at the University of Michigan. We also talked to her about her interest in innovations in digital therapeutics, how she's worked with some developers to ensure the efficacy and quality of their products, and what apps that she recommends to patients as well as providers. We talked to her about her new book! It's called "Mind Your Gut: The Science-Backed Whole-Body Guide to Living Well with IBS." While this book is geared for people living with IBS, there is some really great information in there for people living with IBD as well and we discussed this with Dr. Riehl as well. Finally we went over some additional virtual resources that she finds helpful for patients. We really enjoyed talking with Dr. Riehl and we know you'll learn so much from her as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• The Gut Health Podcast- Dr. Riehl and Kate Scarlata, RD's new podcast!
• Dr. Meredith Craven's episode
• Info on the Nerva app
• Curable app for chronic pain
• Mahana IBD app
• Diaphragmatic breathing video
• Dr. Brennan Spiegel's book- "VRx: How Virtual Therapeutics Will Revolutionize Medicine"

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This week we talked to Abigail VanHoose- otherwise known as Abigail Marie the Check with IBD! Abigail was diagnosed with UC after a bad car accident and after she finished culinary school. Her disease journey was definitely rocky and very impacted by substandard medical care. Like may people living with IBD, she was told that "diet doesn't matter" but after dealing with multiple flares, she found the book "Breaking the Vicious Cycle that outlines the Specific Carbohydrate Diet and how it can be helpful for people with IBD. She decided to give it a try but found the recipes to be....less than exciting. She decided to put her culinary talents to work and started coming up with new recipes that followed the diet and than led her to decide to share her knowledge in her blog. We talked to her about following the SCD, how she creates the recipes, what she includes on her blog, and her favorite recipes. We also talked to her about her work with the nonprofit Nutrition Therapy for IBD and how she's been able to help them grown their recipe database, expand their social media, and much more. Finally we go on a rant about the medical system, steroids, and medical education. If you've listened to previous episodes, you know this is unsurprising. We had a great time hearing from Abigail, we know you will too and we're all set to try some of her yummy-sounding recipes. Cheers!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Abigail's Blondie recipe
• Abigail's Coffee "Ice Cream" recipe
• Abigail's Strawberry Cupcake with Vanilla Icing recipe
• Nutrition Therapy for IBD

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