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Thank you. Happy to hear this episode was helpful.

I was thinking your guest was going to suggest or comment, but I realized the video was a older video and she may not see my comment 😩

Thank you for sharing your experience. It’s completely understandable to feel nervous, especially given your history. You’re taking an important step by planning to see your doctor, and that’s really commendable. If you are experiencing a medical emergency please call 911. Since you’ve experienced dizziness and even fainting during bowel movements, it’s great that you’re discussing this with a healthcare provider. They can help figure out what might be causing it and ensure you have the right support for your colonoscopy preparation. If you’re looking for more information on colonoscopy prep and ways to make it easier, these resources might help: 📌 American College of Gastroenterology (ACG): Colonoscopy Prep Guide 🔗 gi.org 📌 Colorectal Cancer Alliance: Colonoscopy Prep Tips & Shopping List 🔗 colorectalcancer.org/screening-prevention/colonoscopy-prep-tips/shopping-list-your-colonoscopy-prep 📌 Fight Colorectal Cancer: Colonoscopy Prep Tips 🔗 fightcolorectalcancer.org/blog/colonoscopy-prep-tips/ 📌 Mayo Clinic: What to Expect from a Colonoscopy 🔗 www.mayoclinic.org/tests-procedures/colonoscopy/about/pac-20393569 You’re not alone in this, and I hope your appointment goes smoothly. Wishing you the best!

Thank you for your question. We cannot provide medical advice, so please consult your healthcare provider with any concerns. Budesonide is a corticosteroid commonly used for inflammatory conditions. While generally well-tolerated, some studies suggest long-term use may be associated with mood or behavioral changes in some individuals. Factors like dosage, health conditions, and stopping the medication can also play a role. For more information, check out these evidence-based sources: Neuropsychologic changes and inhaled corticosteroids 🔗 www.jacionline.org/article/S0091-6749%2804%2901252-7/fulltext Side effects of budesonide - NHS 🔗 www.nhs.uk/medicines/budesonide-tablets-capsules-and-granules/side-effects-of-budesonide-tablets-capsules-and-granules/ Budesonide: Safety and efficacy in long-term use (PubMed) 🔗 pubmed.ncbi.nlm.nih.gov/8353649/ Mayo Clinic: Budesonide (Oral Route) 🔗 www.mayoclinic.org/drugs-supplements/budesonide-oral-route/description/drg-20073233 Regarding budesonide oral suspension (BOS) for eosinophilic esophagitis (EoE), research by Dr. Evan Dellon supports its efficacy and tolerability: Budesonide Oral Suspension in EoE - Study (PubMed) 🔗 pubmed.ncbi.nlm.nih.gov/29902649/ Budesonide for EoE: Symptomatic & Histologic Improvement (PubMed) 🔗 pubmed.ncbi.nlm.nih.gov/27889574/ While these studies affirm its effectiveness for EoE, they do not specifically address long-term behavioral side effects in children. If you notice any significant changes, discussing them with a healthcare provider is the best step. Hope this helps!

@ you are the best! I love everything you do. My son was purposely misdiagnosed with EoE to put him on the oral steroid where his mother mixes it with honey. Soon after it was needlessly forced into his system, they put him on 50mg of naltrexone. I believe this is criminal. Have you ever heard of this being done? Please help me. His inflammation was gone after the endoscopy, but they won’t take him off it. I believe the statement that the medical professionals say that it’s well tolerated long term is a lie. When he went crazy they used it all under the guise of autism and silenced me in the worst way possible. On 2/12/24 the FDA approved budesonide for EoE, but they say it’s “ineffective and unsafe” beyond 12 weeks. Can you confirm this? Thank you!

@@accountabilityincoming-dp2ds thank you so much for the feedback. Again, we cannot provide medical advice and this channel is for education and informational purposes only. EoE is a progressive disease. And treatment could put EoE in remission. It is crucial you speak with with a healthcare provider who can accurately diagnosis your son, and then offer options for treatment. Addressing your 12-week question: According to several evidence-based sources, including the drug-maker's own PR issued in 2/24 confirm your statement. www.contemporarypediatrics.com/view/fda-approves-budesonide-oral-suspension-eosinophilic-esophagitis. From Dr. Dellon. UNC www.med.unc.edu/medicine/news/new-drug-approvals-are-reshaping-the-landscape-of-eosinophilic-esophagitis-eoe-treatment/

Also ,please see our EoE playlist with updated information for EoE 101 as well as specific episodes related to EoE in Children th-cam.com/play/PLA6jR0eoexewd4cbKU6k8vwVFE0tN685W.html th-cam.com/video/ACIEsDv1W5w/w-d-xo.html

@@GastroGirl I can’t thank you enough and I owe you a nice dinner if you ever come to San Francisco. One more thing: have you ever heard of a child being placed on 50mg of Naltrexone, AFTER being put on a corticosteroid? Can you connect me with other parents whose child went crazy from budesonide and instead of the health of the child, the hospital went after the loving parent? Thank you so much for your time and concern.

Thank you for sharing. While we cannot provide medical advice, we can offer some guidance to discuss with your provider. Given the complex nature of your child's symptoms, especially following a traumatic brain injury (TBI), a comprehensive and multidisciplinary approach is essential. Below are evidence-based considerations and resources that may assist in your discussions with healthcare providers to better understand and manage your son's condition. *See the end for the evidence-based sources Again, the information below is for education purpose only and not medical advice, diagnosis or treatment. Please consult your healthcare provider to address your concerns and questions specific to your son's health condition. 1. Post-Traumatic Brain Injury Complications: Nausea and Vomiting Post-TBI: Persistent nausea and vomiting can occur after a TBI due to various factors, including vestibular dysfunction, increased intracranial pressure, or autonomic nervous system disturbances. A study published in Pediatrics examined the association between vomiting and traumatic brain injuries in children, highlighting the importance of monitoring such symptoms. Source: Pediatrics 2. Cyclic Vomiting Syndrome (CVS): Diagnosis and Management: CVS is characterized by recurrent episodes of severe vomiting with symptom-free periods in between. Management often includes identifying and avoiding triggers, supportive care during episodes, and prophylactic medications. The Children's Hospital of Philadelphia provides detailed information on CVS, including its symptoms and treatment options. Source: CHILDREN'S HOSPITAL OF PHILADELPHIA 3. Gastrointestinal Evaluations: Chronic Vomiting in Children: A thorough evaluation is crucial to rule out gastrointestinal causes such as gastroesophageal reflux disease (GERD), gastroparesis, or anatomical abnormalities. The Mayo Clinic discusses the diagnostic approach and treatment options for cyclic vomiting syndrome, which can be relevant in chronic cases. MAYO CLINIC 4. Neurological Assessments: Post-Concussion Syndrome (PCS): Symptoms like chronic headaches, dizziness, and vomiting can be part of PCS following a TBI. The Mayo Clinic provides insights into the symptoms and causes of persistent post-concussive symptoms. MAYO CLINIC 5. Multidisciplinary Approach: Integrated Care: Given the multifaceted nature of chronic vomiting post-TBI, involving specialists in neurology, gastroenterology, and psychology can provide a holistic approach to diagnosis and treatment. The American Academy of Pediatrics emphasizes the importance of recognizing both gastrointestinal and systemic causes of vomiting in children. PEDIATRICS 6. Supportive Therapies: Hydration and Nutrition: Ensuring adequate hydration and nutrition is vital, especially during vomiting episodes. Oral rehydration solutions and, in severe cases, intravenous fluids may be necessary. The Cleveland Clinic offers guidance on managing cyclic vomiting syndrome, including hydration strategies. CLEVELAND CLINIC 7. Psychological Support: Addressing Anxiety and Stress: Chronic illness can lead to anxiety, which may exacerbate symptoms. Cognitive-behavioral therapy (CBT) and other psychological interventions can be beneficial. The Mayo Clinic discusses the role of psychological support in managing post-concussion syndrome. MAYO CLINIC Suggested Next Steps: Comprehensive Evaluation: Pursue a thorough assessment with a pediatric neurologist and gastroenterologist to explore both neurological and gastrointestinal causes. Tailored Treatment Plan: Request your provider(s) develop an individualized care plan that may include medications, dietary modifications, and supportive therapies. Regular Monitoring: Continuous follow-up is essential to adjust treatments as needed and to monitor progress. I hope these resources provide valuable insights and assist in navigating the complexities of your child's condition. Sources Pediatrics Journal: Vomiting and Traumatic Brain Injuries in Children publications.aap.org/pediatrics/article/141/4/e20173123/37710/Vomiting-With-Head-Trauma-and-Risk-of-Traumatic Children's Hospital of Philadelphia: Cyclic Vomiting Syndrome Information www.chop.edu/conditions-diseases/cyclic-vomiting Mayo Clinic: Cyclic Vomiting Syndrome Diagnosis and Treatment www.mayoclinic.org/diseases-conditions/cyclic-vomiting-syndrome/diagnosis-treatment/drc-20352167 Mayo Clinic: Post-Concussion Syndrome Overview www.mayoclinic.org/diseases-conditions/post-concussion-syndrome/symptoms-causes/syc-20353352 American Academy of Pediatrics: Cyclic Vomiting Syndrome Overview publications.aap.org/pediatricsinreview/article/39/2/100/35127/Cyclic-Vomiting-Syndrome Cleveland Clinic: Cyclic Vomiting Syndrome Management my.clevelandclinic.org/health/diseases/14894-cyclic-vomiting-syndrome

@TheGalwayfan are your symptoms better now that you are gluten free?

Hi and thank you for sharing your story. While we cannot provide medical advice, one suggestion is to discuss this concern regarding the black stools with your healthcare provider. It is important that your doctor determine why your stool color is black. Black stool is often a sign of gastrointestinal bleeding, but not always. Certain medications, supplements and foods may also turn your poop black. In that case, it’s not called melena. From Cleveland Clinic: Excerpt: What is melena (black stool)? “Melena” is the medical term for the black, tarry stool that comes from bleeding in your upper gastrointestinal (GI) tract. Black stool is a sign of older blood in your stool. The blood turns black and tarry while traveling through your GI tract from higher up, where it started - usually in your stomach or upper small intestine. Digestive chemicals interact with the blood during its journey, changing its color and texture. What is the difference between melena and black stool? Healthcare providers diagnose melena when they’ve confirmed that the color of your poop is, in fact, from internal bleeding. Black stool is often a sign of gastrointestinal bleeding, but not always. Certain medications, supplements and foods may also turn your poop black. In that case, it’s not called melena. See full article here my.clevelandclinic.org/health/symptoms/25058-melena Hope that helps!

@@GastroGirl Thanks so much for your reply and the information! The hospital contacted me, yesterday, and the gastroenterologist followed up with a report stating I do not have eoe (yay!) but that I did have some small ulcers that were in the process of healing, and also that I have diverticulosis in part of the bowel, but no polyps, this time, thankfully! I'm 68 years old! I appreciate your time. Again, thank you!

It’s eye-opening how many people go through this without realizing there’s a name for it. You’re not alone, and what you’ve been experiencing is completely valid. A gastroenterologist may be able to help identify the cause and explore treatment options to make eating easier and less stressful. You deserve relief, and there are ways to manage this-don’t hesitate to seek care. Wishing you the best on your journey to answers and better health! Let me know if you’d like any other alternatives!

thebestpart.ca/designer-shit/

You are so welcome. Please check out Apfed, leading and trusted EoE resource for apfed.org/ Hope you find it helpful.

Thank you for sharing your health journey. Hope your upcoming appointments go well and you are able to get in to a GI motility specialist soon.

@ thanks I am part of the dysphagia duo TH-cam channel and fb group and an esophageal motility group they have a membership program for members with dysphagia . It’s a dietitian and speech pathologist are doing it they have videos for meal preparation.

@@BrandonPotter-r9b fantastic. Sounds like a helpful resource.

Thank you for your question. We cannot provide medical advice, information provided here is for education purposes only. As stated in the episode, eosinophilic esophagitis (EoE) is a chronic immune-mediated condition characterized by the accumulation of eosinophils, a type of white blood cell, in the esophagus. This leads to inflammation and various symptoms, primarily related to swallowing difficulties. To address your question about raspy or low-pitched voice (Voice Changes): Possible Connection to EoE While not a hallmark symptom, voice changes such as a raspy or low-pitched voice can occur in EoE, especially if there is concurrent acid reflux (GERD) or if inflammation affects nearby structures, potentially irritating the vocal cords. Other Causes to Consider. Voice changes are more commonly associated with conditions directly affecting the vocal cords or larynx, such as laryngitis, vocal cord nodules, or other forms of irritation. Your Struggling with Stairs and Breathlessness Unlikely Direct Connection to EoE EoE primarily affects the esophagus and does not typically cause systemic symptoms like breathlessness or difficulty with physical exertion. Other Causes to Consider These symptoms are more indicative of respiratory or cardiovascular conditions, such as asthma, chronic obstructive pulmonary disease (COPD), or heart disease. It's also possible that deconditioning or anemia could contribute to such symptoms. Again, we cannot provide medical advice, information here is for education purposes only. Please do: 1. Consult Healthcare Providers -Gastroenterologist: To evaluate and manage EoE and assess any related symptoms. -Otolaryngologist (ENT Specialist): For assessment of voice changes and potential vocal cord involvement. - Pulmonologist or Cardiologist: To investigate causes of breathlessness and exertional difficulties. 2. Symptom Monitoring: Keep a detailed record of your symptoms, noting their frequency, duration, and any potential triggers. This information can aid healthcare providers in making an accurate diagnosis. 3. Diagnostic Evaluations: Be prepared for potential diagnostic tests, such as endoscopy for EoE, laryngoscopy for vocal cord assessment, and pulmonary function tests or cardiac evaluations for breathlessness. Addressing these symptoms with appropriate specialists will help in determining their underlying causes and formulating an effective treatment plan. Sources: Here is a list of sources with URLs to support the information provided: 1. Eosinophilic Esophagitis (EoE) Overview - Mayo Clinic: [Eosinophilic Esophagitis - Symptoms and Causes](www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/symptoms-causes/syc-20372197) 2. Raspy or Hoarse Voice Related to EoE and Acid Reflux - UPMC: [Allergies and the Esophagus](www.upmc.com/services/south-central-pa/allergy-asthma-immunology/allergies/esophagus) 3. Breathlessness and Difficulty Climbing Stairs - Information on differential diagnosis for breathlessness and exertional symptoms is not directly tied to EoE but should involve assessment by a pulmonologist or cardiologist: - American Lung Association: [Shortness of Breath](www.lung.org/lung-health-diseases/warning-signs-of-lung-disease/shortness-of-breath) - American Heart Association: [Signs of Heart Disease](www.heart.org/en/health-topics/heart-attack/warning-signs-of-a-heart-attack) 4. Diagnostic Testing and Specialists for EoE and Related Symptoms - American College of Gastroenterology (ACG): [Eosinophilic Esophagitis (EoE)](gi.org/topics/eosinophilic-esophagitis/) - American Academy of Otolaryngology: [Hoarseness - What Causes Voice Changes](www.entnet.org/resource/hoarseness/)

Thank you for sharing your story. Please let us know how you're doing after your appointments in January,

Thank you for sharing your health journey and encouraging others to be their own health advocate. While we cannot provide medical advice, have you worked with a GI expert registered dietitian who can help you with a four or six food elimination diet to help identify the food triggers related to your EoE? Excerpt from ACAAI "The foods that most commonly cause an allergic reaction leading to EoE include milk, eggs, wheat, soy, peanuts or tree nuts and fish or shellfish. You may have a combination of allergies that increase the risk of EoE. For example, although it is rare for pollen allergies alone to cause EoE, about one in four people who have food allergy-induced EoE notice a seasonal variation in their symptoms." acaai.org/allergies/allergic-conditions/eosinophilic-esophagitis/ Here are some great resources from APFED apfed.org/resources/for-patients/for-adults/nutrition-and-recipes/

@ Thank you for our reply! I haven't worked with a GI dietician yet but that is my next step...I have multiple GI appts scheduled in the next few weeks and also allergy specialists appointment as well. I agree with your advice and that is my next step! Thank you so much for replying.

I just got my confirmation of EOE today after an endoscopy and biopsies. 37, been having issues for about twenty years and also kept being told it was everything else. My oldest kiddo was diagnosed with EGE when he was six but it was not really communicated with us the extent of it. Have my follow up with the allergist in two weeks. Hoping to get it under control. I have food getting stuck almost every day but I'm usually able to get it passed without having to go to the docs. Would love to not have to be concerned every time I eat. ❤

@ I am sorry to hear you are also going through this and I hope you can find the help you needs with your allergist. It's a dark, scary rocky road with EOE unfortunately with many twists and turns. My advice is to eat soups and soft foods only to avoid any chance of food impaction. I've struggled for years trying to find things I can eat that won't affect me. Recently after my last ER visit and sudden flare up I decided to go vegan/gluten free/dairy free at the advice of my allergist. It's only been about two weeks but I have seen a large improvement. I'm hoping I can narrow down what causes my flare ups and also get some further professional, more in depth food testing done. I have another 4 appointments lined up with my GI specialist and another allergy specialist etc. My PCP suggested I may need another scope with a 2nd ballooning/stretch of my esophagus (had that 2 years ago and was started on Dupixent.) he said strictures will continue to develop. I'm not sure if that is what is happening with me and won't know until they go in again and take a look. Yes I fully understand and would also love to not freak out every time I eat something. The only way I've been able to keep that fear and problem in check is again to eat just soups and basically "baby mush" style foods or protein shakes/liquids only. Eating solid food just makes me panic and I have also noticed that anxiety and panic will contribute to the flare up and make it far worse. That may not be in the scientific literature but I have noticed many strange symptoms that are not discussed over the 15 years I have had this. For me, after 5 ER trips with food impaction over the years needing endoscopy for removal, I am too terrified to eat anything solid so I adapted. I got used to it and just accepted this is my life now. Ironically I am healthier now as I have a good healthy diet of homemade vegan soups. I just make a big pot and freeze in containers that I take out for the week. Then I have my vegan protein shakes, applesauce, oat milk and oatmeal. It's a lonesome, horrible disease that seems endless. I've felt hopelessness before many times with it. I pray you get answers and help with your EOE and some relief.

Thank you for the feedback and no, you are not alone. Please check out Apfed for additional support resources apfed.org/ and you may find our new app helpful as well. Please check it out gastrogirl.com/ask-gg-app/

I dont know if this is a new app but im finding absolutely no help with EOE in there and im struggling to navigate your website to find more help there too. ​@GastroGirl

It took me close to 3 years to start gaining a few pounds and get some energy back. Good luck, I hope you feel better soon 😊

@@TheGalwayfan thanks for your info. I guess everyone is different and there is no true answer to this. I have a little more energy but not the amount that I wish I could have. I lost weight as well 7 pounds which I want back asap.

Thank you for sharing your story. Great to hear you are recognizing the possible symptoms of EoE and going to the GI. Let us know how you are doing.

Thank you for the feedback and excellent suggestion. We are planning episodes for 2025 and will add this to the plan.